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GOOD MORNING, EVERYONE.

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AND THANK YOU FOR JOINING US FOR

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THIS CLINICAL CENTER RESEARCH

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HOSPITAL BOARD MEETING.

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I'M NINA SCHOR.

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BY DAY I AM THE DEPUTY DIRECTOR

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FOR INTRAMURAL RESEARCH NIH,

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BUT FOR THE PURPOSE OF THIS

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MEETING, I AM THE DESIGNATED

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FEDERAL OFFICIAL FOR THIS BOARD.

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SO I AM GOING TO BEGIN THE

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MEETING BY HANDING THE VIRTUAL

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PODIUM OVER TO DR. GILMAN, WHO

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HAS SOME VERY SPECIAL REMARKS TO

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MAKE.

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>> THANKS, NINA.

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AND I'M GRATEFUL TO THE BOARD

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MEMBERS AND TO YOU, DR. SCHOR,

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FOR GIVING ME A FEW MINUTES TO

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MEMORIALIZE MY FRIEND AND

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COLLEAGUE, DR. COOTS.

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I AM GRATEFUL FOR ALL OF THE

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EXPRESSIONS OF SYMPATHY PASSED

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BY BOARD MEMBERS TO ME AND I

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WILL ENSURE THAT AT AN

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APPROPRIATE TIME, THEY ARE

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PASSED TO DR. COOTS' WIFE AND

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CHILDREN.

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I FIRST MET HIM IN AUGUST OR

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VERY EARLY IN SEPTEMBER OF 2002,

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WHEN HE SIGNED IN AT THE ARMY

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OFFICE OF THE SURGEON GENERAL,

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LOCATED THEN IN FALLS CHURCH,

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VIRGINIA.

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I HAD SIGNED IN JUST A FEW WEEKS

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AHEAD OF HIM, AND WHILE OUR

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OFFICES WERE NOT LOCATED IN THE

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PENTAGON, THESE WERE PENTAGON

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JOBS, EARLY IN THE POST 9/11

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TIME FRAME AND THEY WERE

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BRUTALLY TAXING.

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HE HAD JUST ARRIVED FROM EUROPE,

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VAN TOLD ME, AMONG OTHER THINGS,

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HE HAD NOT TAKEN ANY LEAVE OR

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VACATION TIME IN THE PREVIOUS

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YEAR.

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HE ALSO TOLD ME THAT ME THAT HEN

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THE PROCESS OF GETTING A DIVORCE

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AND HE WAS A STUDENT AT THE

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DISTANCE EDUCATION PROGRAM, AND

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FINALLY, THAT HE WAS ACTIVE IN

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THE DERMATOLOGY SECTION OF THE

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NATIONAL MEDICAL ASSOCIATION AT

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THE NATIONAL PROGRAM LEVEL.

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I TOLD HIM I WOULD SEE HIM IN A

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MONTH, THAT THE PEOPLE WHO

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WORKED FOR ME WOULD NOT LOSE

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THEIR LEAVE OR VACATION TIME,

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AND HE ONLY HAD 30 DAYS TO USE

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HIS 30 DAYS OF LEAVE.

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IN SUBSEQUENT MEETINGS, VAN TOLD

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ME THAT SOME OF THE FOLKS IN

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EUROPE HAD ASKED HIM TO RETURN

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TO WORK ON A PROJECT THERE.

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IT BECAME VERY APPARENT EARLY ON

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THAT EVERYONE LIKED HAVING VAN

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ON THEIR TEAM.

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DAVID BAUME SENT ME AN EMAIL AND

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SAID IN  YIDDISH, VAN WAS A

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MINSCH.

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WHEN EVERYBODY WANTS YOU ON

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THEIR TEAM, I WOULD SAY THAT'S A

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PRETTY GOOD DEFINITION OF

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MINSCH.

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VAN HAD DIFFICULTY TURNING THEM

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DOWN.

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MY ROLE BECAME TRYING TO PROTECT

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HIM FROM HIS TENDENCY TO

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OVERCOMMIT.

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I TOLD HIM TO LET THE FOLKS IN

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EUROPE KNOW THAT HE WAS ON MY

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TEAM NOW, I WAS HIS COACH, AND

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HE COULDN'T PLAY FOR ANYONE ELSE

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WITHOUT MYOKAY.

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IF VAN HAD TROUBLE SAYING NO, I

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WOULD NEED TO DO IT FOR HIM.

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THE SPORTS METAPHOR OF THE COACH

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AND THE TEAM, THE GREAT TEAM

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MEMBER CHARACTERIZED OUR

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RELATIONSHIP FOR ALMOST THE NEXT

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20 YEARS.

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VAN CALLED ME COACH, AND I WAS

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PROUD OF THE TITLE, EVEN THOUGH

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HE DID NOT REALLY NEED MY HELP

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VERY OFTEN.

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WE DID AGREE THAT HE PROBABLY

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SHOULDN'T REFER TO ME AS COACH

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IN CLINICAL CENTER RESEARCH

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HOSPITAL BOARD MEETINGS.

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I THOUGHT I KNEW VAN PRETTY WELL

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AFTER THOSE INITIAL ENCOUNTERS.

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I DID KNOW A LOT ABOUT HIM BUT

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IT TURNED OUT WE HAD JUST

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SCRATCHED THE SURFACE.

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I WAS LATER TO LEARN A LOT MORE

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ABOUT HIM.

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VAN RECEIVED AN APPOINTMENT TO

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THE UNITED STATES MILITARY

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ACADEMY AT WEST POINT, BUT HE

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LEFT WEST POINT AFTER ONE YEAR.

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BY THAT TIME, HIS POST COLLEGE

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ASPIRATIONS HAD TURNED TO

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MEDICINE.

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AN HE KNEW HE WOULD NOT BE IN TE

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SMALL SELECT GROUP AT THE TOP OF

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THE CLASS TO GO STRAIGHT TO

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MEDICAL SCHOOL AFTER GRADUATION.

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SO HE LEFT WEST POINT AND WENT

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TO HOWARD UNIVERSITY.

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THERE ARE LOTS OF WEST POINT

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GRADUATES WHO BECOME GENERAL

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OFFICERS DURING THEIR

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DISTINGUISHED CAREERS, BUT VAN

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IS THE ONLY WEST POINT DROPOUT I

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KNOW OF WHO ACHIEVED THAT

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DISTINCTION.

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VAN WAS ADMITTED TO MEDICAL

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SCHOOL AS AN UNDERGRAD AT HOWARD

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BUT DIDN'T SUCCEED IN MEDICAL

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SCHOOL IN HIS FIRST ATTEMPT

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EITHER.

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BUT HE NEVER GAVE UP ON HIS

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DREAM OF BECOMING A DOCTOR.

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HE KEPT REAPPLYING TO MEDICAL

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SCHOOL AND FINALLY WAS ADMITTED

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TO THE UNIVERSITY OF OKLAHOMA,

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WHERE HE RECEIVED HIS

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MEDICAL DEGREE.

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VAN DECIDED HE WANTED TO BE A

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DERMATOLOGIST, BUT WAS INITIALLY

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TURNED DOWN BY ALL OF THE ARMY

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TRAINING PROGRAMS IN

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DERMATOLOGY.

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IT TOOK A TWO-YEAR ASSIGNMENT AS

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A GENERAL MEDICAL OFFICER IN

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KOREA TO CONVINCE THE ARMY TO

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GIVE HIM A TRAINING SLOT.

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VAN WAS A MEMBER OF A BE NEF

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LBENOVELENORDER, MEMBERSHIP REQM

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TO HAVE A LONGITUDAL

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RELATIONSHIP WITH A CHARITABLE

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CAUSE.

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VAN'S CAUSE WAS AN ORPHANAGE IN

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MALL DOUGH VA.

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HE VISIT THERE HAD OCCASIONALLY

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AND SUPPORTED THEM FINANCIALLY,

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AND VAN IS THE ONLY MEMBER OF

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THE ARMY STAFF WHO COULD SELL

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YOU A MALDOVAN CARPET.

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HIS MOTHER DIED WHILE HE WAS

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WORKING FOR ME, AN EXTRAORDINARY

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LIFE OF ACTIVISM AND CAUSES

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RELATED TO SOCIAL JUSTICE AND

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COMMUNITY ACTIVITIES.

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I DECIDED THAT VAN'S TENDENCY TO

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OVERCOMMIT CAME FROM HIS MOM.

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SHE WAS QUITE A LADY.

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I ONLY RECENTLY LEARNED A BIT

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ABOUT VAN'S FATHER.

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HE, TOO, WAS ACTIVE IN THE

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AFRICAN AMERICAN COMMUNITY IN

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TULSA, OKLAHOMA.

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HIS MEDICAL PRACTICE WAS LOCATED

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NEAR THE GREENWOOD AREA OF

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TULSA, WHERE ONE OF THE WORST

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EPISODES OF RACIAL VIOLENCE IN

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OUR NATION'S HISTORY OCCURRED IN

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1921.

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25 YEARS AFTER THESE HORRIFIC

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EVENTS, VAN'S FATHER WAS

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INSTRUMENTAL IN THE

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ESTABLISHMENT OF A CHAPTER OF

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THE URBAN LEAGUE IN TULSA.

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SERVICE IS A FAMILY TRAIT.

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DOCTORS OFTEN DO NOT MAKE GREAT

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MILITARY STAFF OFFICERS, WE ARE

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QUITE ACCUSTOMED TO MAKING

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DECISIONS WITHOUT BEING

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QUESTIONED AND WE SOMETIMES

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BRISTLE AT THE IDEA WE SHOULD

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HAVE TO DEFEND ANSWERS OF OTHERS

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TO THOSE QUESTIONS.

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BUT VETTING AND DEFENDING

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DECISIONS IS THE CONSTANT

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ACTIVITY OF ALL ON THE ARMY

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STAFF.

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VAN WAS A GREAT STAFF OFFICER,

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INCREDIBLY QUICK-MINDED,

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CONFIDENT WITHOUT ARROGANCE.

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HE POSSESSED WONDERFUL

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INTERPERSONAL SKILLS AND HE WAS

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A TRULY GIFTED LISTENER.

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HE WELCOMED THE INPUT OF OTHERS

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AND WAS AS WILLING TO BE A TEAM

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MEMBER AS HE WAS TO BE A TEAM

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LEADER.

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VAN DID STRUGGLE A LITTLE BIT

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DURING HIS TIME WORKING FOR ME,

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IT TURNED OUT THE DIVORCE DID

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NOT REMAIN APPLICABLE.

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AMICABLE, BUT IN TRUEFASHION, H.

212
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HE GRADUATED FROM THE ARMY WAR

213
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COLLEGE WITH A MASTER'S DEGREE

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IN STRATEGIC STUDIES AND WAS

215
00:07:13,688 --> 00:07:15,223
SUCCESSFUL IN SEVERAL COMMAND

216
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ASSIGNMENTS BEFORE BEING

217
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SELECTED TO BE A GENERAL

218
00:07:18,526 --> 00:07:19,527
OFFICER.

219
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HE FOUND LOVE AGAIN WITH A

220
00:07:22,530 --> 00:07:24,099
LOVELY WOMAN FROM SOUTH AMERICA

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NAMED CLAUDIA, ONLY IT WAS

222
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PRONOUNCED CLOUDIA.

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LATER IN LIFE THAN MOST OF US,

224
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VAN BECAME A FATHER FOR THE

225
00:07:31,673 --> 00:07:33,608
FIRST TIME TO SON MAX, FOLLOWED

226
00:07:33,608 --> 00:07:35,477
BY DAUGHTER ALEXANDRIA.

227
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VAN AND I RECONNECTED ABOUT THE

228
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TIME HE WAS RETIRING FROM THE

229
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ARMY.

230
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WE COMMUNICATED A TIME OR TWO

231
00:07:41,749 --> 00:07:43,418
WHILE HE WAS LOOKING FOR A

232
00:07:43,418 --> 00:07:45,086
POST-ARMY JOB BUT HE DIDN'T NEED

233
00:07:45,086 --> 00:07:46,221
MY HELP.

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I ATTENDED HIS RETIREMENT

235
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CEREMONY AT FORT MYER.

236
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WE HAD INFREQUENT BUT MEANINGFUL

237
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CONTACT DURING HIS EARLY YEARS

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00:07:53,394 --> 00:07:55,263
AT HOLY CROSS AND MY EARLY YEARS

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HERE AT THE CLINICAL CENTER.

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I CONFESS THAT WHEN I APPROACHED

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VAN THREE YEARS AGO AND ASKED

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HIM TO JOIN THE CLINICAL CENTER

243
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RESEARCH HOSPITAL BOARD, I

244
00:08:06,207 --> 00:08:07,075
SHAMELESSLY TOOK ADVANTAGE OF

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OUR LONG FRIENDSHIP AND HIS

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TENDENCY TO OVERCOMMIT.

247
00:08:10,445 --> 00:08:12,247
BUT IT WAS THE OUTGOING CHAIR OF

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THE CLINICAL CENTER RESEARCH

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HOSPITAL BOARD, LAURA FERESE,

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WHO REALLY PINPOINTED VAN AS THE

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BOARD MEMBER SHE THOUGHT SHOULD

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BE HER SUCCESSOR.

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VAN AGREED WITHOUT RESERVATION.

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I HAD A RESERVATION OR TWO

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00:08:27,795 --> 00:08:29,164
OFFING AN APPEARANCE AS CHAIR.

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I CAN ASSURE YOU THAT VAN WOULD

257
00:08:30,465 --> 00:08:32,667
HAVE HELD ME ACCOUNTABLE IF HE

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00:08:32,667 --> 00:08:35,069
OR THE CCRHB MEMBERS BELIEVED

259
00:08:35,069 --> 00:08:36,604
THE CLINICAL CENTER WAS ENTERING

260
00:08:36,604 --> 00:08:38,573
TROUBLED WATERS.

261
00:08:38,573 --> 00:08:40,575
SINCE THE LAST BOARD MEETING IN

262
00:08:40,575 --> 00:08:41,776
FEBRUARY, I'VE HAD THE CHANCE TO

263
00:08:41,776 --> 00:08:44,746
VISIT WITH VAN IN HIS HOME IN

264
00:08:44,746 --> 00:08:46,981
NORTHERN MONTGOMERY COUNTY

265
00:08:46,981 --> 00:08:47,415
TWICE.

266
00:08:47,415 --> 00:08:49,817
THE CHIEF OF NUTRITION CARE AT

267
00:08:49,817 --> 00:08:51,352
THE NIH CLINICAL CENTER IS A

268
00:08:51,352 --> 00:08:54,122
RECENTLY RETIRED U.S. ARMY

269
00:08:54,122 --> 00:08:55,523
RESERVE COLONEL, AND HE WAS

270
00:08:55,523 --> 00:08:56,391
ASKED TO PARTICIPATE IN A

271
00:08:56,391 --> 00:08:57,759
WEDDING OF ANOTHER MILITARY

272
00:08:57,759 --> 00:09:00,528
OFFICER AND NEEDED A CAVALRY

273
00:09:00,528 --> 00:09:02,497
SABER FOR THE SABER ARCH.

274
00:09:02,497 --> 00:09:03,831
WHEN SHE ASKED I TOLD HER I

275
00:09:03,831 --> 00:09:05,934
DIDN'T HAVE A SABER BUT I WAS

276
00:09:05,934 --> 00:09:07,001
PRETTY SURE I KNEW SOMEONE WHO

277
00:09:07,001 --> 00:09:07,602
DID.

278
00:09:07,602 --> 00:09:08,870
I EMAILED VAN AND HE SAID HE

279
00:09:08,870 --> 00:09:10,505
WOULD BE HAPPY TO LEND ANNIE ONE

280
00:09:10,505 --> 00:09:13,975
OF HIS SABERS, HE JUST HAD TO

281
00:09:13,975 --> 00:09:14,475
FIGURE OUT WHICH ONE.

282
00:09:14,475 --> 00:09:15,577
HE HAD A SELECTION.

283
00:09:15,577 --> 00:09:17,145
I WENT TO VAN'S HOUSE TO PICK IT

284
00:09:17,145 --> 00:09:19,948
UP AND FOR HIM TO SHOW ME HIS

285
00:09:19,948 --> 00:09:21,216
COLLECTION OF MILITARY

286
00:09:21,216 --> 00:09:21,783
MEMORABILIA.

287
00:09:21,783 --> 00:09:24,285
VAN HAD OVER 400 SWORDS FROM ALL

288
00:09:24,285 --> 00:09:25,853
AROUND THE WORLD, AND WHILE

289
00:09:25,853 --> 00:09:28,223
SWORDS SEEMED TO BE HIS

290
00:09:28,223 --> 00:09:29,324
SPECIALTY, HE HAD LOTS AND LOTS

291
00:09:29,324 --> 00:09:30,725
OF OTHER STUFF AS WELL.

292
00:09:30,725 --> 00:09:32,293
ALL ORGANIZED AND DISPLAYED IN

293
00:09:32,293 --> 00:09:34,128
THE LOWER PART OF HIS HOUSE IN A

294
00:09:34,128 --> 00:09:35,997
WAY THAT WAS MUSEUM QUALITY.

295
00:09:35,997 --> 00:09:37,198
VAN KNEW A LOT ABOUT EVERYTHING

296
00:09:37,198 --> 00:09:38,833
IN HIS COLLECTION, AND I HAD A

297
00:09:38,833 --> 00:09:41,135
GREAT TIME LOOKING AT IT ALL.

298
00:09:41,135 --> 00:09:42,270
THE SECOND TIME I WAS IN VAN'S

299
00:09:42,270 --> 00:09:44,505
HOME WAS TO RETURN THE SABER.

300
00:09:44,505 --> 00:09:46,708
IT WAS ON THAT OCCASION WHEN I

301
00:09:46,708 --> 00:09:47,842
LEARNED ABOUT VAN'S DAD FOR THE

302
00:09:47,842 --> 00:09:49,877
FIRST TIME.

303
00:09:49,877 --> 00:09:52,113
VAN'S FATHER DIED WHEN HE WAS

304
00:09:52,113 --> 00:09:54,349
16, BUT MY DAD DIED WHEN I WAS

305
00:09:54,349 --> 00:09:54,515
18.

306
00:09:54,515 --> 00:09:55,783
WE FOUND ONE MORE THING THAT WE

307
00:09:55,783 --> 00:09:59,053
HAD IN COMMON.

308
00:09:59,053 --> 00:10:00,488
WHEN VAN TALKED WITH ME LAST

309
00:10:00,488 --> 00:10:02,991
FALL ABOUT STEPPING DOWN AT HIS

310
00:10:02,991 --> 00:10:04,692
JOB AT HOLY CROSS TO FOCUS ON

311
00:10:04,692 --> 00:10:06,060
HIS HEALTH, I ASKED HIM WHETHER

312
00:10:06,060 --> 00:10:07,862
HE HAD ANY HOBBIES TO PURSUE IN

313
00:10:07,862 --> 00:10:08,463
HIS RETIREMENT.

314
00:10:08,463 --> 00:10:10,031
THAT'S WHEN I HEARD HIM SPEAK

315
00:10:10,031 --> 00:10:11,032
ABOUT HORSEBACK RIDING FOR THE

316
00:10:11,032 --> 00:10:12,300
FIRST TIME.

317
00:10:12,300 --> 00:10:14,369
EVER THE HISTORIAN, HE REMINDED

318
00:10:14,369 --> 00:10:17,105
ME IT WAS THE SAME HOBBY ENJOYED

319
00:10:17,105 --> 00:10:19,173
BY GENERAL GEORGE MARSHAL

320
00:10:19,173 --> 00:10:19,841
THROUGHOUT HIS CAREER.

321
00:10:19,841 --> 00:10:21,776
IF THERE IS ANY CONSOLATION

322
00:10:21,776 --> 00:10:22,910
ABOUT THE MANNER OF HIS DEATH,

323
00:10:22,910 --> 00:10:24,112
IT IS THAT HE WAS DOING

324
00:10:24,112 --> 00:10:25,446
SOMETHING THAT BROUGHT HIM GREAT

325
00:10:25,446 --> 00:10:27,882
PLEASURE.

326
00:10:27,882 --> 00:10:29,484
LAST EVENING, I WATCHED A 45

327
00:10:29,484 --> 00:10:30,885
MINUTE PODCAST IN WHICH VAN

328
00:10:30,885 --> 00:10:34,822
SPOKE AT LENGTH ABOUT HIS CAR 

329
00:10:34,822 --> 00:10:35,056
CAREER.

330
00:10:35,056 --> 00:10:36,024
WHEN ASKED HOW HE WOULD WANT TO

331
00:10:36,024 --> 00:10:37,225
BE REMEMBERED, VAN SAID HE WOULD

332
00:10:37,225 --> 00:10:41,963
LIKE TO BE REMEMBERED AS A

333
00:10:41,963 --> 00:10:42,930
PLODDER, SOMEONE WHO

334
00:10:42,930 --> 00:10:44,999
OCCASIONALLY FAILED BUT IN THE

335
00:10:44,999 --> 00:10:47,435
MIDST OF FAILURE, NEVER GAVE UP

336
00:10:47,435 --> 00:10:49,470
ON HIMSELF OR DEPARTED FROM THE

337
00:10:49,470 --> 00:10:51,105
GOALS HE STAPTED FOR HIMSELF.

338
00:10:51,105 --> 00:10:53,207
WHEN GIVEN THE CHANCE, HE WAS

339
00:10:53,207 --> 00:10:53,975
ALWAYS SUCCESSFUL.

340
00:10:53,975 --> 00:10:55,443
I CONTEND THAT HE RECEIVED

341
00:10:55,443 --> 00:10:58,346
SECOND CHANCES BECAUSE OF THE

342
00:10:58,346 --> 00:10:59,280
EXTRAORDINARY PEOPLE SKILLS AND

343
00:10:59,280 --> 00:11:01,949
THE WAY HE TREATED PEOPLE, AS

344
00:11:01,949 --> 00:11:03,017
WAS EVIDENT THROUGHOUT HIS LIFE

345
00:11:03,017 --> 00:11:03,651
AND CAREER.

346
00:11:03,651 --> 00:11:05,153
THANK YOU FOR LETTING ME TELL

347
00:11:05,153 --> 00:11:06,254
YOU ABOUT HOW SPECIAL A PERSON

348
00:11:06,254 --> 00:11:08,323
VAN WAS.

349
00:11:08,323 --> 00:11:11,092
HE WAS A SUPERB LEADER, A GOOD

350
00:11:11,092 --> 00:11:12,160
FRIEND, AND HE WAS A GREAT

351
00:11:12,160 --> 00:11:13,361
RESOURCE TO THE CLINICAL CENTER

352
00:11:13,361 --> 00:11:14,762
FOR THE LAST THREE YEARS.

353
00:11:14,762 --> 00:11:16,164
HE WILL BE GREATLY MISSED BUT

354
00:11:16,164 --> 00:11:17,832
THOSE OF US WHO KNEW HIM WELL

355
00:11:17,832 --> 00:11:18,933
WILL NEVER FORGET.

356
00:11:18,933 --> 00:11:26,474
THANK YOU.

357
00:11:26,474 --> 00:11:28,209
>> THANK YOU SO MUCH FOR
THAT

358
00:11:28,209 --> 00:11:31,045
REALLY BEAUTIFUL TRIBUTE, AND MY

359
00:11:31,045 --> 00:11:32,480
CONDOLENCES NOT JUST TO THE

360
00:11:32,480 --> 00:11:36,818
FAMILY OF DR. COOTS, BUT TO THE

361
00:11:36,818 --> 00:11:37,285
BOARD AS WELL.

362
00:11:37,285 --> 00:11:39,253
I KNOW MANY OF YOU WORKED VERY,

363
00:11:39,253 --> 00:11:41,556
VERY CLOSELY WITH VAN FOR MANY

364
00:11:41,556 --> 00:11:44,392
YEARS, AND THIS HAS TO BE A VERY

365
00:11:44,392 --> 00:11:49,197
DIFFICULT TIME FOR THE BOARD.

366
00:11:49,197 --> 00:11:52,467
SO I WILL BEGIN THE MEETING

367
00:11:52,467 --> 00:11:53,701
PROPER AT THIS POINT.

368
00:11:53,701 --> 00:11:56,337
I GUESS I'M SUPPOSED TO DO THIS

369
00:11:56,337 --> 00:11:58,639
WITH THE GAVEL.

370
00:11:58,639 --> 00:12:01,476
YOU CAN TELL I'M UNACCUSTOMED TO

371
00:12:01,476 --> 00:12:02,877
DOING SUCH THINGS.

372
00:12:02,877 --> 00:12:05,747
BUT I WILL -- I WANT TO WELCOME

373
00:12:05,747 --> 00:12:07,782
THOSE OF YOU WHO HAVE ACTUALLY

374
00:12:07,782 --> 00:12:13,254
JOINED US, THOSE IN PERSON,

375
00:12:13,254 --> 00:12:17,091
DR. DAVID CHIN, MR. DAVID BAUM,

376
00:12:17,091 --> 00:12:20,628
AND MISS ANTOINETTE ROYSTER, AND

377
00:12:20,628 --> 00:12:24,866
THOSE WHO ARE PARTICIPATING VIA

378
00:12:24,866 --> 00:12:31,906
ZOOM, MISS STEPHANIE REEL,

379
00:12:31,906 --> 00:12:33,608
DR. DEVASKAR, MR. STEVEN

380
00:12:33,608 --> 00:12:35,943
GOLDSTEIN, AND DR. CRAIG SAMITT.

381
00:12:35,943 --> 00:12:37,678
AND I JUST WANT TO MAKE NOTE OF

382
00:12:37,678 --> 00:12:40,081
THE FACT THAT DRS. CUNNINGHAM

383
00:12:40,081 --> 00:12:43,718
AND FREISCHLAG AND MR. LESLIE

384
00:12:43,718 --> 00:12:49,891
WERE UNABLE TO JOIN US TODAY.

385
00:12:49,891 --> 00:12:50,892
THE OTHER THING I WANT TO

386
00:12:50,892 --> 00:12:52,093
MENTION IS THAT WE OFTEN -- WE

387
00:12:52,093 --> 00:12:54,128
DON'T SEE THEM ON THE SCREEN AND

388
00:12:54,128 --> 00:12:55,329
THEY'RE NOT IN THE ROOM WITH US,

389
00:12:55,329 --> 00:12:59,534
BUT MANY, MANY OF OUR NIH AND

390
00:12:59,534 --> 00:13:00,868
COMMUNITY COLLEAGUES ARE JOINING

391
00:13:00,868 --> 00:13:03,871
US ON VIDEOCAST, AND SO THANK

392
00:13:03,871 --> 00:13:07,842
YOU TO ALL OF YOU, AND WELCOME

393
00:13:07,842 --> 00:13:08,609
TO THE MEETING.

394
00:13:08,609 --> 00:13:11,712
SO WE HAVE A LITTLE BIT OF A

395
00:13:11,712 --> 00:13:14,949
CHANGE IN THE ORDER OF THE

396
00:13:14,949 --> 00:13:16,617
PROGRAM THIS MORNING, AND I'M

397
00:13:16,617 --> 00:13:18,853
VERY PLEASED TO SAY THAT

398
00:13:18,853 --> 00:13:19,654
DR. GEOFFREY GINSBURG IS GOING

399
00:13:19,654 --> 00:13:24,058
TO BE JOINING US, ALTHOUGH HE IS

400
00:13:24,058 --> 00:13:25,993
ON TRAVEL, SO WE ARE VERY, VERY

401
00:13:25,993 --> 00:13:28,529
GRATEFUL TO YOU FOR MAKING TIME

402
00:13:28,529 --> 00:13:30,965
FOR US TODAY.

403
00:13:30,965 --> 00:13:32,366
DR. GINSBURG IS CHIEF MEDICAL

404
00:13:32,366 --> 00:13:35,636
AND SCIENTIFIC OFFICER OF THE

405
00:13:35,636 --> 00:13:38,039
NIH ALL-OF-US RESEARCH PROGRAM,

406
00:13:38,039 --> 00:13:41,976
AND HE'S JOINING US VIA ZOOM,

407
00:13:41,976 --> 00:13:43,511
AND WILL GIVE US AN UPDATE ON

408
00:13:43,511 --> 00:13:44,479
THIS VERY, VERY IMPORTANT AND

409
00:13:44,479 --> 00:13:46,113
INTERESTING PROGRAM.

410
00:13:46,113 --> 00:13:47,982
SO DR. GINSBURG, THE FLOOR IS

411
00:13:47,982 --> 00:13:50,051
YOURS.

412
00:13:50,051 --> 00:13:51,152
>> GREAT.

413
00:13:51,152 --> 00:13:51,819
THANK YOU.

414
00:13:51,819 --> 00:13:53,154
I'M JUST GETTING MY SLIDES SET

415
00:13:53,154 --> 00:13:53,321
UP.

416
00:13:53,321 --> 00:13:55,523
CAN YOU SEE MY PRESENTATION ON

417
00:13:55,523 --> 00:13:55,990
THE SCREEN?

418
00:13:55,990 --> 00:13:57,925
AND CAN YOU HEAR ME OKAY?

419
00:13:57,925 --> 00:13:58,793
>> YES.

420
00:13:58,793 --> 00:14:00,094
YES, VERY GOOD.

421
00:14:00,094 --> 00:14:02,430
>> WONDERFUL.

422
00:14:02,430 --> 00:14:04,599
SO FIRST, THANK YOU, DR. SCHOR

423
00:14:04,599 --> 00:14:06,033
AND ALSO DR. GILMAN FOR HAVING

424
00:14:06,033 --> 00:14:07,034
ME HERE TODAY.

425
00:14:07,034 --> 00:14:09,604
I WANT TO EXPRESS ALSO MY SORROW

426
00:14:09,604 --> 00:14:11,305
FOR YOUR LOSS, AND I WISH ALL OF

427
00:14:11,305 --> 00:14:12,874
YOU PEACE AND HEALING IN THE

428
00:14:12,874 --> 00:14:15,676
DAYS AHEAD.

429
00:14:15,676 --> 00:14:18,846
TODAY I AM HONORED AND DELIGHTED

430
00:14:18,846 --> 00:14:20,281
TO SHARE WITH YOU OUR PROGRESS

431
00:14:20,281 --> 00:14:22,116
ON THE ALL-OF-US RESEARCH

432
00:14:22,116 --> 00:14:22,650
PROGRAM.

433
00:14:22,650 --> 00:14:25,520
AS WELL AS ENCOURAGE YOU TO

434
00:14:25,520 --> 00:14:31,325
THINK ABOUT W ABOUT WAYS THAT WN

435
00:14:31,325 --> 00:14:31,626
COLLABORATE.

436
00:14:31,626 --> 00:14:32,894
I HOPE THAT AS I REVIEW THE

437
00:14:32,894 --> 00:14:34,128
PROGRAM FOR YOU IN THE NEXT FEW

438
00:14:34,128 --> 00:14:35,229
MINUTES, THAT YOU THINK ABOUT

439
00:14:35,229 --> 00:14:38,165
ALL-OF-US AS A PLATFORM ON WHICH

440
00:14:38,165 --> 00:14:39,300
POTENTIALLY THE CLINICAL CENTER

441
00:14:39,300 --> 00:14:40,701
COULD STAND FOR SOME OF THE WORK

442
00:14:40,701 --> 00:14:42,136
THAT IT DOES, THE IMPORTANT WORK

443
00:14:42,136 --> 00:14:45,740
THAT IT DOES.

444
00:14:45,740 --> 00:14:47,174
THE FIRST THING I WANT TO DO IS

445
00:14:47,174 --> 00:14:50,311
COMMENT ON THE POWER OF

446
00:14:50,311 --> 00:14:51,846
LONGITUDAL POPULATION HEALTH

447
00:14:51,846 --> 00:14:52,313
STUDIES.

448
00:14:52,313 --> 00:14:55,516
I'M SURE EVERYBODY HERE

449
00:14:55,516 --> 00:14:57,652
RECOGNIZES THE FRAMINGHAM HEART

450
00:14:57,652 --> 00:14:59,754
STUDY WHICH CELEBRATES THIS YEAR

451
00:14:59,754 --> 00:15:01,222
ITS 76TH ANNIVERSARY, AND THIS

452
00:15:01,222 --> 00:15:03,357
STUDY IS CLEARLY ICONIC.

453
00:15:03,357 --> 00:15:05,760
IT ENROLLED OVER 5,000 MEN AND

454
00:15:05,760 --> 00:15:09,497
WOMEN IN 1948, AND IN JUST 12

455
00:15:09,497 --> 00:15:11,832
YEARS WAS ABLE TO REALLY DISCERN

456
00:15:11,832 --> 00:15:14,502
REALLY IMPORTANT FACTORS OF

457
00:15:14,502 --> 00:15:15,836
RISK, WHICH AS YOU CAN SEE IN

458
00:15:15,836 --> 00:15:16,804
THE LEFT-HAND SIDE IS THE FIRST

459
00:15:16,804 --> 00:15:18,139
TIME THAT THAT TERM APPEARED IN

460
00:15:18,139 --> 00:15:19,206
THE MEDICAL LITERATURE.

461
00:15:19,206 --> 00:15:21,008
FACTORS OF RISK FOR HEART

462
00:15:21,008 --> 00:15:22,176
DISEASE.

463
00:15:22,176 --> 00:15:24,445
THE ASSOCIATION OF TOBACCO USE,

464
00:15:24,445 --> 00:15:25,980
CIGARETTES, WITH INCREASING

465
00:15:25,980 --> 00:15:27,882
RATES OF HEART DISEASE AND

466
00:15:27,882 --> 00:15:29,517
STROKE, THE IMPORTANCE OF

467
00:15:29,517 --> 00:15:33,321
CHOLESTEROL AND HYPERTENSION AS

468
00:15:33,321 --> 00:15:34,322
INCITING FACTORS FOR HEART

469
00:15:34,322 --> 00:15:36,691
DISEASE, AND EVEN DISCERNS SOME

470
00:15:36,691 --> 00:15:37,925
FACTORS THAT MITIGATE THE RISK

471
00:15:37,925 --> 00:15:40,094
OF HEART DISEASE SUCH AS

472
00:15:40,094 --> 00:15:42,063
EXERCISE AND DIET.

473
00:15:42,063 --> 00:15:44,031
AND NOT ONLY WAS THIS STUDY

474
00:15:44,031 --> 00:15:45,232
SEMINAL IN BRINGING THESE

475
00:15:45,232 --> 00:15:47,969
FINDINGS TO THE MEDICAL

476
00:15:47,969 --> 00:15:48,970
LITERATURE, BUT OVER THE LAST

477
00:15:48,970 --> 00:15:52,707
FOUR OR FIVE DECADES, THE

478
00:15:52,707 --> 00:15:54,108
FINDINGS OF THE FRAMINGHAM HEART

479
00:15:54,108 --> 00:15:56,944
STUDY WERE ADOPTED INTO CLINICAL

480
00:15:56,944 --> 00:15:58,579
CARE, CLINICAL GUIDELINES AND

481
00:15:58,579 --> 00:15:59,914
ACTUALLY THEY'RE NOW ROUTINELY

482
00:15:59,914 --> 00:16:03,017
USED IN KALG  CALCULATORS IN

483
00:16:03,017 --> 00:16:03,618
ELECTRONIC HEALTH RECORDS AND

484
00:16:03,618 --> 00:16:06,354
ALL OF THIS HAS RESULTED IN A

485
00:16:06,354 --> 00:16:07,221
SIGNIFICANT IMPACT ON PUBLIC

486
00:16:07,221 --> 00:16:08,756
HEALTH WITH DRAMATIC INCREASES

487
00:16:08,756 --> 00:16:13,861
IN THE RATES OF CARDIOVASCULAR

488
00:16:13,861 --> 00:16:15,896
DISEASE, STROKE, MORBIDITY AND

489
00:16:15,896 --> 00:16:18,499
MORTALITY OVER THE LAST 40 TO 50

490
00:16:18,499 --> 00:16:19,600
YEARS.

491
00:16:19,600 --> 00:16:20,434
SO NOW IMAGINE WHAT COULD BE

492
00:16:20,434 --> 00:16:23,871
DONE WITH A MILLION PARTICIPANTS

493
00:16:23,871 --> 00:16:25,339
IN A STUDY THAT IS GOING TO LAST

494
00:16:25,339 --> 00:16:26,807
FOR DECADES, AND THAT IS REALLY

495
00:16:26,807 --> 00:16:27,808
WHAT THE ALL-OF-US RESEARCH

496
00:16:27,808 --> 00:16:30,411
PROGRAM IS COMMITTED TO.

497
00:16:30,411 --> 00:16:32,346
OUR MISSION IS TO ACCELERATE

498
00:16:32,346 --> 00:16:34,348
HEALTH RESEARCH AND MEDICAL

499
00:16:34,348 --> 00:16:36,417
BREAKTHROUGHS, ENABLING

500
00:16:36,417 --> 00:16:38,085
INDIVIDUALIZED PREVENTION,

501
00:16:38,085 --> 00:16:40,621
TREATMENT AND CARE FOR ALL OF

502
00:16:40,621 --> 00:16:40,921
US.

503
00:16:40,921 --> 00:16:42,023
OUR MISSION STATEMENT IS LOWER

504
00:16:42,023 --> 00:16:43,924
CASE, REALLY MEANING TO SIGNIFY

505
00:16:43,924 --> 00:16:45,493
THE RELEVANCE OF THIS PROGRAM TO

506
00:16:45,493 --> 00:16:46,627
THE DIVERSITY OF THE POPULATION

507
00:16:46,627 --> 00:16:47,828
OF THIS COUNTRY.

508
00:16:47,828 --> 00:16:49,030
WE'RE DOING THIS THROUGH

509
00:16:49,030 --> 00:16:51,132
PARTNERSHIPS WITH OUR

510
00:16:51,132 --> 00:16:52,633
PARTICIPANTS, AS I SAID, A GOAL

511
00:16:52,633 --> 00:16:56,537
OF AT LEAST A MILLION, AND I'LL

512
00:16:56,537 --> 00:16:57,972
TELL YOU MORE ABOUT THAT IN A

513
00:16:57,972 --> 00:16:59,306
MOMENT, BUILDING A DATASET THAT

514
00:16:59,306 --> 00:17:01,575
IS NEARLY UNSURPASSED AROUND THE

515
00:17:01,575 --> 00:17:03,144
GLOBE THAT IS ACCESSIBLE TO

516
00:17:03,144 --> 00:17:07,815
RESEARCHERS AND USING THIS AS A

517
00:17:07,815 --> 00:17:09,483
MAGNET FOR RESEARCHERS FROM VERY

518
00:17:09,483 --> 00:17:10,351
DIFFERENT COMMUNITIES,

519
00:17:10,351 --> 00:17:11,419
INTERNATIONALLY NOW, TO REALLY

520
00:17:11,419 --> 00:17:17,558
ACTUALLY HAVE A USE OF OUR DATA

521
00:17:17,558 --> 00:17:20,061
AND HOPEFULLY LEADING TO MEDICAL

522
00:17:20,061 --> 00:17:20,394
BREAKTHROUGHS.

523
00:17:20,394 --> 00:17:22,163
YOU CAN SEE ON THE RIGHT,

524
00:17:22,163 --> 00:17:23,464
DR. BERTAGNOLLI RECENTLY WAS

525
00:17:23,464 --> 00:17:24,899
QUOTED AS SAYING THE PROGRAM'S

526
00:17:24,899 --> 00:17:26,400
RICH AND DIVERSE DATASET IS NOW

527
00:17:26,400 --> 00:17:28,636
A VITAL RESOURCE FOR MEDICAL

528
00:17:28,636 --> 00:17:29,570
RESEARCHERS ACROSS THE NIH, THE

529
00:17:29,570 --> 00:17:31,205
COUNTRY AND INDEED THE WORLD.

530
00:17:31,205 --> 00:17:32,773
AND WE HOPE THAT THAT WILL

531
00:17:32,773 --> 00:17:36,043
OBVIOUSLY CONTINUE.

532
00:17:36,043 --> 00:17:37,678
I WANTED TO GIVE YOU A SNAPSHOT

533
00:17:37,678 --> 00:17:38,879
OF WHAT THE PROGRAM IS

534
00:17:38,879 --> 00:17:39,146
CURRENTLY.

535
00:17:39,146 --> 00:17:43,050
AS YOU CAN SEE, WE'VE NOW, SINCE

536
00:17:43,050 --> 00:17:46,854
2018, ENROLLED AS OF TODAY OVER

537
00:17:46,854 --> 00:17:50,224
815,000 PARTICIPANTS WHO HAVE

538
00:17:50,224 --> 00:17:51,892
CONSENTED.

539
00:17:51,892 --> 00:17:53,327
OVER 450,000 OF WHICH HAVE

540
00:17:53,327 --> 00:17:54,662
PROVIDED THEIR ELECTRONIC HEALTH

541
00:17:54,662 --> 00:17:58,132
RECORD DATA TO THE PROGRAM, AND

542
00:17:58,132 --> 00:17:59,900
ALMOST 600,000 HAVE PROVIDED

543
00:17:59,900 --> 00:18:00,768
BIOSPECIMENS AND I'LL TELL YOU

544
00:18:00,768 --> 00:18:01,635
MORE ABOUT HOW THOSE ARE BEING

545
00:18:01,635 --> 00:18:03,738
USED IN A FEW MOMENTS.

546
00:18:03,738 --> 00:18:05,239
YOU CAN SEE ON THE RIGHT WE'RE

547
00:18:05,239 --> 00:18:06,807
ENROLLING PARTICIPANTS FROM

548
00:18:06,807 --> 00:18:08,509
EVERY STATE IN THE UNION, AS

549
00:18:08,509 --> 00:18:11,612
WELL AS SOME OF THE U.S.

550
00:18:11,612 --> 00:18:12,379
TERRITORIES.

551
00:18:12,379 --> 00:18:14,281
THERE'S A SIGNIFICANT ENROLLMENT

552
00:18:14,281 --> 00:18:15,649
IN THE SOUTHWEST WITH CALIFORNIA

553
00:18:15,649 --> 00:18:16,784
AND ARIZONA LEADING THE WAY AND

554
00:18:16,784 --> 00:18:19,954
IN THE NORTHEAST, WITH NEW YORK,

555
00:18:19,954 --> 00:18:20,988
PENNSYLVANIA AND MASSACHUSETTS

556
00:18:20,988 --> 00:18:22,523
HAVING SIGNIFICANT ENROLLMENT.

557
00:18:22,523 --> 00:18:26,460
THERE'S ALSO  GREAT ENROLLMENT

558
00:18:26,460 --> 00:18:27,762
STATISTICS IN THE MID SECTION OF

559
00:18:27,762 --> 00:18:28,429
THE COUNTRY AS WELL AS THE

560
00:18:28,429 --> 00:18:28,796
SOUTHEAST.

561
00:18:28,796 --> 00:18:32,032
I MENTIONED THAT WE ARE VERY

562
00:18:32,032 --> 00:18:33,367
COMMITTED TO PARTICIPANT

563
00:18:33,367 --> 00:18:33,634
DIVERSITY.

564
00:18:33,634 --> 00:18:34,602
AS A MATTER OF FACT, AMONGST OUR

565
00:18:34,602 --> 00:18:38,272
GOALS ARE TO ACHIEVE ENROLLMENT

566
00:18:38,272 --> 00:18:39,707
OF INDIVIDUALS WHO SELF-IDENTIFY

567
00:18:39,707 --> 00:18:42,977
AS NON-WHITE OF ABOUT 50% AND

568
00:18:42,977 --> 00:18:43,744
INDIVIDUALS WHO ARE IN THE

569
00:18:43,744 --> 00:18:45,613
CATEGORY OF UNDERREPRESENTED IN

570
00:18:45,613 --> 00:18:50,184
BIOMEDICAL RESEARCH OF OVER 80%.

571
00:18:50,184 --> 00:18:51,519
SO YOU CAN SEE ON THE LEFT,

572
00:18:51,519 --> 00:18:53,354
WE'RE NOT QUITE AT THE 50% LEVEL

573
00:18:53,354 --> 00:18:56,323
BUT ABOUT 47% CURRENTLY IN OUR

574
00:18:56,323 --> 00:18:57,992
PROGRAM SELF-IDENTIFY AS

575
00:18:57,992 --> 00:18:58,292
NON-WHITE.

576
00:18:58,292 --> 00:19:01,896
AND WE HAVE LOOKED VERY

577
00:19:01,896 --> 00:19:03,130
CAREFULLY AT MEDICAL RESEARCH

578
00:19:03,130 --> 00:19:04,298
STUDIES AND RECOGNIZED THAT

579
00:19:04,298 --> 00:19:08,235
THERE ARE MANY PEOPLE ACROSS THE

580
00:19:08,235 --> 00:19:09,670
COUNTRY WHOSE BACKGROUNDS HAVE

581
00:19:09,670 --> 00:19:11,005
PRECLUDED THEM FROM BEING IN

582
00:19:11,005 --> 00:19:12,339
BIOMEDICAL RESEARCH, NOT ONLY ON

583
00:19:12,339 --> 00:19:13,941
THE BASIS OF RACE AND ETHNICITY

584
00:19:13,941 --> 00:19:15,576
BUT THEIR ACCESS AND UTILIZATION

585
00:19:15,576 --> 00:19:17,011
OF HEALTHCARE, THE EXTREMES OF

586
00:19:17,011 --> 00:19:19,180
AGE, THEIR INCOME LEVELS,

587
00:19:19,180 --> 00:19:21,916
DISABILITY, SEXUAL ORIENTATION,

588
00:19:21,916 --> 00:19:23,184
EDUCATIONAL ACHIEVEMENTS,

589
00:19:23,184 --> 00:19:25,519
WHETHER THEY'RE IN MORE URBAN OR

590
00:19:25,519 --> 00:19:28,389
IN FACT IN RURAL AREAS WHERE

591
00:19:28,389 --> 00:19:29,557
PEOPLE ARE MORE LIKELY TO NEVER

592
00:19:29,557 --> 00:19:30,991
HAVE A CHANCE TO ACCESS A

593
00:19:30,991 --> 00:19:33,194
MEDICAL RESEARCH STUDY.

594
00:19:33,194 --> 00:19:34,395
WE'RE VERY PLEASED TO SAY THAT

595
00:19:34,395 --> 00:19:36,564
USING THIS CATEGORIZATION,

596
00:19:36,564 --> 00:19:40,100
NEARLY 90% OF OUR PARTICIPANTS

597
00:19:40,100 --> 00:19:41,802
HAVE PREVIOUSLY NEVER BEEN IN A

598
00:19:41,802 --> 00:19:44,705
BIOMEDICAL RESEARCH PROGRAM,

599
00:19:44,705 --> 00:19:46,974
CERTAINLY NOTHING OF THIS TYPE.

600
00:19:46,974 --> 00:19:50,811
ON THIS SLIDE, I WANT TO SHARE

601
00:19:50,811 --> 00:19:51,979
WITH YOU THE KINDS OF DATA THAT

602
00:19:51,979 --> 00:19:53,848
WE ARE COLLECTING IN OUR CORE

603
00:19:53,848 --> 00:19:55,282
PROTOCOL.

604
00:19:55,282 --> 00:19:56,817
WE HAVE SEVERAL DIFFERENT DATA

605
00:19:56,817 --> 00:19:58,552
STREAMS WE ASKED PEOPLE AND

606
00:19:58,552 --> 00:19:59,587
PARTICIPANTS TO CONSENT TO

607
00:19:59,587 --> 00:20:00,321
PROVIDE TO US.

608
00:20:00,321 --> 00:20:02,923
I MENTIONED THE ELECTRONIC

609
00:20:02,923 --> 00:20:05,259
HEALTH RECORDS EARLIER WHERE

610
00:20:05,259 --> 00:20:06,527
WE'RE ACCUMULATING HEALTH

611
00:20:06,527 --> 00:20:08,629
RECORDS FROM OVER 25 ELECTRONIC

612
00:20:08,629 --> 00:20:11,799
HEALTH RECORD VENDORS AND WE'VE

613
00:20:11,799 --> 00:20:14,235
BEEN ABLE TO STANDARDIZE THEM

614
00:20:14,235 --> 00:20:17,805
ACCORDING TO THE OMOP DATA MODEL

615
00:20:17,805 --> 00:20:19,106
SO THAT ACHIEVES A SIGNIFICANT

616
00:20:19,106 --> 00:20:20,975
AMOUNT OF HARMONIZATION OVER THE

617
00:20:20,975 --> 00:20:22,243
ELECTRONIC HEALTH RECORD DATA.

618
00:20:22,243 --> 00:20:24,278
OUR PARTICIPANTS ARE ASKED TO

619
00:20:24,278 --> 00:20:27,214
PROVIDE SURVEY INFORMATION,

620
00:20:27,214 --> 00:20:28,315
SELF-REPORTED INFORMATION SINCE

621
00:20:28,315 --> 00:20:29,817
INCEPTION IN 2018, WE'VE

622
00:20:29,817 --> 00:20:31,085
LAUNCHED OVER NINE SURVEYS,

623
00:20:31,085 --> 00:20:34,388
SEVERAL OF WHICH YOU'LL SEE

624
00:20:34,388 --> 00:20:35,456
HERE.

625
00:20:35,456 --> 00:20:37,424
BASIC HEALTH, OVERALL HEALTH,

626
00:20:37,424 --> 00:20:38,859
LIFESTYLE, HEALTHCARE ACCESS AND

627
00:20:38,859 --> 00:20:40,294
UTILIZATION, PERSONAL AND FAMILY

628
00:20:40,294 --> 00:20:41,695
MEDICAL HISTORY, THE SOCIAL

629
00:20:41,695 --> 00:20:42,563
DETERMINANTS OF HEALTH, MENTAL

630
00:20:42,563 --> 00:20:44,198
HEALTH AND WELL-BEING AND AS

631
00:20:44,198 --> 00:20:45,299
I'LL MENTION A LITTLE LATER,

632
00:20:45,299 --> 00:20:48,335
WE'LL BE LAUNCHING A SURVEY ON

633
00:20:48,335 --> 00:20:50,237
OCCUPATIONAL EXPOSURES AND

634
00:20:50,237 --> 00:20:53,207
ENVIRONMENTAL HEALTH IN 2025.

635
00:20:53,207 --> 00:20:54,675
WE ALSO DID A SIGNIFICANT NUMBER

636
00:20:54,675 --> 00:20:58,445
OF SURVEYS DURING THE PANDEMIC

637
00:20:58,445 --> 00:20:59,647
ON THE COVID EXPERIENCE.

638
00:20:59,647 --> 00:21:01,148
THERE WERE AT LEAST SIX OF THOSE

639
00:21:01,148 --> 00:21:03,350
SURVEYS THAT WERE LAUNCHED AND

640
00:21:03,350 --> 00:21:05,753
COMPLETED BY THE PROGRAM.

641
00:21:05,753 --> 00:21:07,087
WHEN INDIVIDUALS ENROLL, WE

642
00:21:07,087 --> 00:21:08,622
REQUIRE STANDARD PHYSICAL --

643
00:21:08,622 --> 00:21:13,727
DAND ADVERTSTANDARDIZED PHYSICAL

644
00:21:13,727 --> 00:21:15,296
MEASUREMENTS, WE COLLECT BLOOD,

645
00:21:15,296 --> 00:21:19,433
URINE AND SALIVA, THE WEARABLE

646
00:21:19,433 --> 00:21:20,734
DATA PREDOMINANTLY FROM FITBITS

647
00:21:20,734 --> 00:21:23,370
BUT MORE AND MORE FROM OTHER

648
00:21:23,370 --> 00:21:26,106
TYPES OF DEVICES PROVIDING US

649
00:21:26,106 --> 00:21:26,974
CONTINUOUS PHENOTYPING BETWEEN

650
00:21:26,974 --> 00:21:28,809
THE EPISODIC DATA COLLECTED IN

651
00:21:28,809 --> 00:21:31,879
THE ELECTRONIC HEALTH RECORDS.

652
00:21:31,879 --> 00:21:33,647
WE'VE RELEASED DATA TO OUR

653
00:21:33,647 --> 00:21:34,882
RESEARCHER COMMUNITY ON A

654
00:21:34,882 --> 00:21:36,150
ROUGHLY YEARLY CADENCE SO WHAT

655
00:21:36,150 --> 00:21:37,885
YOU'RE SEEING HERE IS A SNAPSHOT

656
00:21:37,885 --> 00:21:39,987
OF THE DATA THAT IS AVAILABLE TO

657
00:21:39,987 --> 00:21:44,625
RESEARCHERS AS OF 2023.

658
00:21:44,625 --> 00:21:45,960
OUR NEXT DATA RELEASE WILL BE IN

659
00:21:45,960 --> 00:21:46,694
SEPTEMBER OF THIS YEAR.

660
00:21:46,694 --> 00:21:48,195
SO LAST YEAR AND LAST APRIL, I

661
00:21:48,195 --> 00:21:53,334
JUST WANT TO POINT OUT THESE ARE

662
00:21:53,334 --> 00:21:56,437
ALL CURATED DATA TYPES, THEY GO

663
00:21:56,437 --> 00:21:58,706
THROUGH A PROCESS FROM

664
00:21:58,706 --> 00:22:02,743
ACQUISITION TO CURATION.

665
00:22:02,743 --> 00:22:06,647
I DO WANT TO CALL OUST THE

666
00:22:06,647 --> 00:22:08,983
245,000 OR MORE WHOLE GENOME

667
00:22:08,983 --> 00:22:12,152
SEQUENCES AND OVER 310,000

668
00:22:12,152 --> 00:22:14,121
GENOTYPIC ARRAYS.

669
00:22:14,121 --> 00:22:16,557
THIS IS ONE OF THE LARGEST

670
00:22:16,557 --> 00:22:18,592
ACCESSIBLE STORES OF GENOMIC

671
00:22:18,592 --> 00:22:21,128
DATA IN THE WORLD LINKED TO THE

672
00:22:21,128 --> 00:22:22,329
PHENOTYPES ATTRIBUTABLE TO THE

673
00:22:22,329 --> 00:22:23,897
SURVEY RESPONSES THAT WE'VE

674
00:22:23,897 --> 00:22:25,933
RECEIVED, THE PHYSICAL MEASURES

675
00:22:25,933 --> 00:22:28,702
THAT WE'RE ASCERTAINING AS WELL

676
00:22:28,702 --> 00:22:29,903
AS THE ELECTRONIC HEALTH RECORD

677
00:22:29,903 --> 00:22:30,637
DATA THAT WE HAVE.

678
00:22:30,637 --> 00:22:32,506
IN ADDITION, WE PROVIDE

679
00:22:32,506 --> 00:22:34,475
DERIVATIVE DATA TO OUR

680
00:22:34,475 --> 00:22:35,042
RESEARCHER COMMUNITY.

681
00:22:35,042 --> 00:22:37,978
YOU CAN SEE A STRUCTURAL

682
00:22:37,978 --> 00:22:40,848
VARIANCE DERIVED FROM THE GENOME

683
00:22:40,848 --> 00:22:41,815
SEQUENCING INFORMATION.

684
00:22:41,815 --> 00:22:43,183
THERE'S A TYPE OF GENOME

685
00:22:43,183 --> 00:22:44,752
SEQUENCING CALLED LONG READ

686
00:22:44,752 --> 00:22:47,354
SEQUENCING WHICH IS VERY UNIQUE.

687
00:22:47,354 --> 00:22:50,257
WE ARE COMMITTED TO OVER 20,000

688
00:22:50,257 --> 00:22:52,626
LONG READ SEQUENCE DATASETS.

689
00:22:52,626 --> 00:22:54,194
THE FIRST 1,000 WERE RELEASED

690
00:22:54,194 --> 00:22:57,431
LAST YEAR AND THIS 1,000 IS 100%

691
00:22:57,431 --> 00:23:00,868
FROM INDIVIDUALS THAT IDENTIFY

692
00:23:00,868 --> 00:23:02,903
AS AFRICAN AMERICAN, SO 100% OF

693
00:23:02,903 --> 00:23:04,872
THOSE ARE FROM AFRICAN AMERICAN

694
00:23:04,872 --> 00:23:07,274
INDIVIDUALS, AND THEN FITBIT

695
00:23:07,274 --> 00:23:08,375
DATA I MENTIONED THIS IS ONE OF

696
00:23:08,375 --> 00:23:09,910
THE LARGEST WEARABLE DATASETS

697
00:23:09,910 --> 00:23:11,779
THAT HAS BEEN RELEASED PUBLICLY,

698
00:23:11,779 --> 00:23:13,714
AND WE'RE ALSO PROVIDING

699
00:23:13,714 --> 00:23:15,382
DERIVATIVE DATA ON SLEEP FROM

700
00:23:15,382 --> 00:23:17,785
THE WEARABLE TECHNOLOGY DATA.

701
00:23:17,785 --> 00:23:21,388
IT'S IMPORTANT TO HIGHLIGHT

702
00:23:21,388 --> 00:23:22,322
SOMETHING THAT'S IN THE LOWER

703
00:23:22,322 --> 00:23:23,490
RIGHT-HAND CORNER OF THIS SLIDE,

704
00:23:23,490 --> 00:23:25,993
BECAUSE OF THE DIVERSITY OF THE

705
00:23:25,993 --> 00:23:26,894
POPULATION FROM WHICH WE'RE

706
00:23:26,894 --> 00:23:28,729
GETTING THE GENOME SEQUENCE DATA

707
00:23:28,729 --> 00:23:32,232
OUR DATASET NOW CONTAINS NEARLY

708
00:23:32,232 --> 00:23:33,100
300 MILLION GENETIC VARIANTS

709
00:23:33,100 --> 00:23:36,070
THAT HAVE NEVER BEEN SEEN IN ANY

710
00:23:36,070 --> 00:23:37,538
PUBLIC DATASETS REALLY ASPIRING

711
00:23:37,538 --> 00:23:39,339
TO CLOSE THE GAP IN GENOMIC DATA

712
00:23:39,339 --> 00:23:41,642
THAT IS BIASED TOWARD

713
00:23:41,642 --> 00:23:43,911
INDIVIDUALS OF EUROPEAN ANCESTRY

714
00:23:43,911 --> 00:23:46,080
OR THOSE WHO IDENTIFY AS WHITE

715
00:23:46,080 --> 00:23:47,314
SO THIS IS A REALLY IMPORTANT

716
00:23:47,314 --> 00:23:48,982
ASPECT OF OUR PROGRAM AND WILL

717
00:23:48,982 --> 00:23:50,217
ONLY GROW OVER TIME TO CLOSE

718
00:23:50,217 --> 00:23:51,919
THAT IMPORTANT BIAS GAP.

719
00:23:51,919 --> 00:23:53,320
ONE OF THE OTHER UNIQUE FEATURES

720
00:23:53,320 --> 00:23:55,422
OF THE PROGRAM IS THAT WE'RE

721
00:23:55,422 --> 00:23:57,257
COMMITTED TO RETURN VALUE TO OUR

722
00:23:57,257 --> 00:23:57,691
PARTICIPANTS.

723
00:23:57,691 --> 00:24:00,227
THIS IS PART OF ENGENDERING

724
00:24:00,227 --> 00:24:01,395
TRUST AND BUILDING THE

725
00:24:01,395 --> 00:24:02,296
RELATIONSHIP WITH OUR

726
00:24:02,296 --> 00:24:05,699
PARTICIPANTS THAT I MENTIONED

727
00:24:05,699 --> 00:24:07,367
EARLIER, SO ON THE LEFT-HAND

728
00:24:07,367 --> 00:24:08,435
SIDE, YOU CAN SEE SOME OF THE

729
00:24:08,435 --> 00:24:09,970
TYPES OF VALUE DRIVERS THAT WE

730
00:24:09,970 --> 00:24:11,805
THINK ARE IMPORTANT TO OUR

731
00:24:11,805 --> 00:24:12,673
PARTICIPANTS.

732
00:24:12,673 --> 00:24:14,408
THE INFORMATION FROM THE GENOME

733
00:24:14,408 --> 00:24:16,410
SEQUENCING AND ARRAY, SO GENETIC

734
00:24:16,410 --> 00:24:17,177
INFORMATION, I'LL TELL YOU MORE

735
00:24:17,177 --> 00:24:18,846
ABOUT THAT IN A MOMENT.

736
00:24:18,846 --> 00:24:20,114
WE ALSO GIVE INDIVIDUALS A SENSE

737
00:24:20,114 --> 00:24:21,882
OF HOW THEY COMPARE TO OTHER

738
00:24:21,882 --> 00:24:22,950
INDIVIDUALS IN THE COHORT IN

739
00:24:22,950 --> 00:24:25,352
TERM OF THE WAY THAT THEY ANSWER

740
00:24:25,352 --> 00:24:28,122
SURVEYS OR HOW WHAT'S IN THEIR

741
00:24:28,122 --> 00:24:29,189
ELECTRONIC HEALTH RECORDS IN

742
00:24:29,189 --> 00:24:30,624
TERMS OF SUMMARY DATA.

743
00:24:30,624 --> 00:24:33,060
WE OFFER INDIVIDUALS CHANCES TO

744
00:24:33,060 --> 00:24:34,795
PARTICIPATE IN OTHER RESEARCH

745
00:24:34,795 --> 00:24:35,662
STUDIES, I'LL MENTION THAT ALSO

746
00:24:35,662 --> 00:24:38,499
IN A FEW MOMENTS, AND WE PROVIDE

747
00:24:38,499 --> 00:24:39,700
REGULAR REPORTS ON THE RESEARCH

748
00:24:39,700 --> 00:24:40,901
THAT'S COMING OUT OF THE PROGRAM

749
00:24:40,901 --> 00:24:43,070
TO PARTICIPANTS SO THEY REALLY

750
00:24:43,070 --> 00:24:44,404
UNDERSTAND HOW THEIR DATA IS

751
00:24:44,404 --> 00:24:49,209
CONTRIBUTING TO SCIENCE.

752
00:24:49,209 --> 00:24:52,679
IN TERMS OF THE RETURN OF

753
00:24:52,679 --> 00:24:53,480
GENETIC-RELATED -- GENETIC DATA

754
00:24:53,480 --> 00:24:54,781
TO PARTICIPANTS, WE OFFER TWO

755
00:24:54,781 --> 00:24:57,651
TYPES OF HEALTH-RELATED GENETIC

756
00:24:57,651 --> 00:24:57,985
RESULTS.

757
00:24:57,985 --> 00:25:01,788
WE CALL ONE THE HEREDITARY

758
00:25:01,788 --> 00:25:04,358
DISEASE RISK REPORT, IN WHICH WE

759
00:25:04,358 --> 00:25:06,627
ARE PROVIDING INFORMATION TO

760
00:25:06,627 --> 00:25:09,363
PARTICIPANTS WHO SIGNIFY THEY

761
00:25:09,363 --> 00:25:10,898
WISH TO RECEIVE IT.

762
00:25:10,898 --> 00:25:13,834
INFORMATION ON 59 GENES THAT

763
00:25:13,834 --> 00:25:17,237
HAVE BEEN STATED BY THE AMERICAN

764
00:25:17,237 --> 00:25:19,173
COLLEGE OF MEDICAL GENOMICS AS

765
00:25:19,173 --> 00:25:20,374
BEING ACTIONABLE AND IMPORTANT

766
00:25:20,374 --> 00:25:21,275
FOR HEALTH CONDITIONS.

767
00:25:21,275 --> 00:25:25,345
YOU CAN SEE MANY OF THESE

768
00:25:25,345 --> 00:25:27,047
GENETIC VARIANTS PORTEND THE

769
00:25:27,047 --> 00:25:29,149
RISK OF A VARIETY OF CANCERS, OF

770
00:25:29,149 --> 00:25:32,519
HEART DISEASE, OF HEMOLOGIC

771
00:25:32,519 --> 00:25:34,054
DISORDERS AND THE LIKE AND SOME

772
00:25:34,054 --> 00:25:35,489
RARER DISEASES.

773
00:25:35,489 --> 00:25:37,357
SO THESE 59 GENES ARE REPORTED

774
00:25:37,357 --> 00:25:40,327
AS PART OF OUR HEREDITARY

775
00:25:40,327 --> 00:25:41,695
DISEASE RISK REPORT, AND WE ALSO

776
00:25:41,695 --> 00:25:43,230
HAVE A SECOND RECORD CALLED THE

777
00:25:43,230 --> 00:25:45,232
MEDICINE AND YOUR DNA REPORT.

778
00:25:45,232 --> 00:25:47,334
IN THIS CASE, WE'RE ANALYZING

779
00:25:47,334 --> 00:25:49,603
SEVEN GENES THAT ARE RESPONSIBLE

780
00:25:49,603 --> 00:25:51,605
FOR METABOLIZING THE DRUGS THAT

781
00:25:51,605 --> 00:25:53,173
THE VAST NUMBER OF AMERICANS

782
00:25:53,173 --> 00:25:57,578
WILL TAKE IN THEIR LIFETIME.

783
00:25:57,578 --> 00:25:59,580
THESE ARE DERIVED FROM THE

784
00:25:59,580 --> 00:26:01,048
CLINICAL PHARMACOGENOMICS

785
00:26:01,048 --> 00:26:03,083
IMPLEMENTATION CONSORTIUM

786
00:26:03,083 --> 00:26:03,917
GUIDELINES.

787
00:26:03,917 --> 00:26:04,952
WHEN INDIVIDUALS AGREE TO

788
00:26:04,952 --> 00:26:06,987
RECEIVE THEIR RESULTS, THEY ALSO

789
00:26:06,987 --> 00:26:08,522
CAN SIGN UP FOR A GENETIC

790
00:26:08,522 --> 00:26:09,389
COUNSELING VISIT THAT THE

791
00:26:09,389 --> 00:26:11,158
PROGRAM PROVIDES ACCESS TO

792
00:26:11,158 --> 00:26:12,659
GENETIC COUNSELORS WITH THAT

793
00:26:12,659 --> 00:26:16,263
VISIT BEING EITHER IN ENGLISH OR

794
00:26:16,263 --> 00:26:19,333
SPANISH, AND TO ALLOW FOR THE

795
00:26:19,333 --> 00:26:21,468
UNDERREPRESENTED POPULATIONS IN

796
00:26:21,468 --> 00:26:26,106
OUR COHORT TO HAVE ACCESS TO THE

797
00:26:26,106 --> 00:26:27,107
OPTIMAL INFORMATION TO MANAGE

798
00:26:27,107 --> 00:26:28,875
THEIR HEALTH BASED ON THESE

799
00:26:28,875 --> 00:26:29,543
REPORTS.

800
00:26:29,543 --> 00:26:30,944
THIS IS A SNAPSHOT OF WHAT

801
00:26:30,944 --> 00:26:34,214
PARTICIPANTS MIGHT SEE WHEN WE

802
00:26:34,214 --> 00:26:34,581
RETURN RESULTS.

803
00:26:34,581 --> 00:26:36,316
ON THE LEFT IS A SCREENSHOT OF

804
00:26:36,316 --> 00:26:38,252
OUR HEREDITARY DISEASE RISK

805
00:26:38,252 --> 00:26:40,687
REPORT OF THE 59 -- OF ANY OF

806
00:26:40,687 --> 00:26:41,355
THE 59 GENES ASSOCIATED WITH

807
00:26:41,355 --> 00:26:43,390
HEALTH CONDITIONS.

808
00:26:43,390 --> 00:26:44,625
AND THE ONE YOU SEE ON THIS

809
00:26:44,625 --> 00:26:47,127
SLIDE, THERE'S A REPORT ON THE

810
00:26:47,127 --> 00:26:49,963
BRCA1 GENE AND ITS RELEVANCE TO

811
00:26:49,963 --> 00:26:50,530
BREAST CANCER RISK.

812
00:26:50,530 --> 00:26:52,065
AS YOU CAN SEE AT THE BOTTOM,

813
00:26:52,065 --> 00:26:56,670
WE'VE OFFERED NEARLY 230,000

814
00:26:56,670 --> 00:26:59,606
PEOPLE A CHANCE TO SEE THEIR

815
00:26:59,606 --> 00:27:00,140
GENETIC INFORMATION.

816
00:27:00,140 --> 00:27:01,808
ABOUT 50% OR MORE THAN 50% HAVE

817
00:27:01,808 --> 00:27:03,577
SAID YES AND OVER 100,000 HAVE

818
00:27:03,577 --> 00:27:05,012
ACTUALLY VIEWED THEIR RESULTS.

819
00:27:05,012 --> 00:27:08,015
AND THE DATA SUGGESTS -- SHOWS

820
00:27:08,015 --> 00:27:10,217
US THAT NEARLY 3% OF INDIVIDUALS

821
00:27:10,217 --> 00:27:11,385
WHO GET THEIR GENETIC

822
00:27:11,385 --> 00:27:14,054
INFORMATION ACTUALLY HAVE AN

823
00:27:14,054 --> 00:27:15,355
ACTIONABLE RESULT IN TERMS OF

824
00:27:15,355 --> 00:27:18,392
DISEASE RISK.

825
00:27:18,392 --> 00:27:20,327
SO IF YOU EXTRAPOLATE TO THE

826
00:27:20,327 --> 00:27:22,029
MILLION ON TARGET NUMBER FOR OUR

827
00:27:22,029 --> 00:27:23,230
COHORT, THAT WILL BE 30,000

828
00:27:23,230 --> 00:27:26,266
AMERICANS THAT WILL POTENTIALLY

829
00:27:26,266 --> 00:27:27,267
HAVE RECEIVED INFORMATION THAT

830
00:27:27,267 --> 00:27:28,468
COULD BE USED TO MANAGE THEIR

831
00:27:28,468 --> 00:27:29,670
HEALTH THAT THEY OTHERWISE MIGHT

832
00:27:29,670 --> 00:27:31,538
NOT HAVE SEEN HAD THEY NOT BEEN

833
00:27:31,538 --> 00:27:32,572
IN THE ALL-OF-US RESEARCH

834
00:27:32,572 --> 00:27:35,375
PROGRAM.

835
00:27:35,375 --> 00:27:37,444
IN THE MIDDLE YOU CAN SEE A

836
00:27:37,444 --> 00:27:39,513
REPORT ON PHARMACOGENETIC GENES,

837
00:27:39,513 --> 00:27:41,581
MEDICINE AND YOUR DNA REPORT.

838
00:27:41,581 --> 00:27:42,783
AGAIN ROUGHLY THE SAME NUMBERS

839
00:27:42,783 --> 00:27:44,117
HAVE BEEN OFFERED THE CHOICE TO

840
00:27:44,117 --> 00:27:47,521
SEE THIS, AND HAVE AGREED TO SEE

841
00:27:47,521 --> 00:27:51,658
THESE RESULTS.

842
00:27:51,658 --> 00:27:54,061
BUT IMPORTANTLY, MORE THAN 90%

843
00:27:54,061 --> 00:27:56,563
OF INDIVIDUALS IN OUR POPULATION

844
00:27:56,563 --> 00:27:57,664
AND PROBABLY IN THE U.S.

845
00:27:57,664 --> 00:27:58,699
POPULATION FOR THAT FACT, PEOPLE

846
00:27:58,699 --> 00:28:00,100
IN THE ROOM AND ON THIS CALL,

847
00:28:00,100 --> 00:28:02,936
WILL HAVE AN ACTIONABLE RESULT

848
00:28:02,936 --> 00:28:03,837
FROM PHARMACOGENETIC GENES THAT

849
00:28:03,837 --> 00:28:04,805
COULD BE USED FOR DRUGS THAT

850
00:28:04,805 --> 00:28:05,972
THEY ARE CURRENTLY TAKING OR

851
00:28:05,972 --> 00:28:07,441
DRUGS THAT THEY MIGHT TAKE IN

852
00:28:07,441 --> 00:28:08,275
THE FUTURE.

853
00:28:08,275 --> 00:28:09,376
FINALLY ON THE RIGHT-HAND SIDE,

854
00:28:09,376 --> 00:28:11,345
WE PROVIDE GENETIC ANCESTRY AND

855
00:28:11,345 --> 00:28:13,747
NON-HEALTH TRAITS TO

856
00:28:13,747 --> 00:28:14,047
INDIVIDUALS.

857
00:28:14,047 --> 00:28:16,850
WE STARTED DOING THIS IN 2020

858
00:28:16,850 --> 00:28:19,586
WITH NEARLY 300,000 OFFERED THE

859
00:28:19,586 --> 00:28:21,521
CHOICE, MORE THAN 50% SAYING

860
00:28:21,521 --> 00:28:23,156
YES, AND 170,000 SEEING THE

861
00:28:23,156 --> 00:28:23,757
RESULTS.

862
00:28:23,757 --> 00:28:25,158
WE'RE NOW RETURNING THESE

863
00:28:25,158 --> 00:28:26,893
RESULTS AT A RATE OF 5,000 PER

864
00:28:26,893 --> 00:28:30,297
WEEK, AND HOPE TO CATCH UP WITH

865
00:28:30,297 --> 00:28:32,032
OUR BACKLOG SOMETIME LATER THIS

866
00:28:32,032 --> 00:28:36,069
YEAR OR EARLY NEXT YEAR.

867
00:28:36,069 --> 00:28:37,938
ONE OF THE OTHER THINGS ABOUT

868
00:28:37,938 --> 00:28:38,705
RETURN OF RESULTS THAT WE'RE

869
00:28:38,705 --> 00:28:39,940
VERY INTERESTED IN IS UNDER AND

870
00:28:39,940 --> 00:28:45,145
STING WINTERESTED IN LEARNING WO

871
00:28:45,145 --> 00:28:46,213
PARTICIPANTS DO WITH THEIR

872
00:28:46,213 --> 00:28:47,681
RESULTS ONCE THEY RECEIVE THEM.

873
00:28:47,681 --> 00:28:49,516
SO WE'RE DEVELOPING AN OUTCOMES

874
00:28:49,516 --> 00:28:50,617
RESEARCH AGENDA DOWNSTREAM OF

875
00:28:50,617 --> 00:28:51,618
RETURN OF RESULTS IN WHICH WE

876
00:28:51,618 --> 00:28:54,421
ARE AIMING TO UNDERSTAND FIRST

877
00:28:54,421 --> 00:28:55,655
OF ALL DO OUR PARTICIPANTS

878
00:28:55,655 --> 00:28:56,423
ACTUALLY UNDERSTAND THEIR

879
00:28:56,423 --> 00:28:59,359
RESULTS, DO THEY SHARE THESE

880
00:28:59,359 --> 00:29:00,460
DATA AND INFORMATION WITH THEIR

881
00:29:00,460 --> 00:29:01,661
FAMILY MEMBERS, WITH THEIR

882
00:29:01,661 --> 00:29:03,530
HEALTHCARE PROVIDERS, DOES IT

883
00:29:03,530 --> 00:29:05,065
CHANGE ANY OF THEIR PERSONAL

884
00:29:05,065 --> 00:29:06,166
HEALTH DECISIONS, DOES IT CHANGE

885
00:29:06,166 --> 00:29:07,934
THE WAY THEY'RE BEING MANAGED BY

886
00:29:07,934 --> 00:29:11,838
THEIR HEALTH PROVIDER, ARE THERE

887
00:29:11,838 --> 00:29:14,341
ANY DOWNSTREAM FOLLOW-UP TESTS

888
00:29:14,341 --> 00:29:17,844
THAT THEY HAVE, DOES IT IMPACT

889
00:29:17,844 --> 00:29:20,380
HEALTHCARE UTILIZATION AS WELL

890
00:29:20,380 --> 00:29:22,749
AS THE ECONOMICS OF HEALTHCARE

891
00:29:22,749 --> 00:29:23,683
EVENTUALLY IS SOMETHING THAT IS

892
00:29:23,683 --> 00:29:28,588
REALLY IN OUR SIGHTS.

893
00:29:28,588 --> 00:29:30,323
I'D LIKE TO SHARE SOME EARLY

894
00:29:30,323 --> 00:29:33,393
ASPECTS OF THE SCIENTIFIC IMPACT

895
00:29:33,393 --> 00:29:34,194
OF THE ALL-OF-US RESEARCH

896
00:29:34,194 --> 00:29:36,430
PROGRAM.

897
00:29:36,430 --> 00:29:39,933
THE FIRST PAPER FROM THE PROGRAM

898
00:29:39,933 --> 00:29:45,005
DATA WAS PUBLISHED AROUND 2019,

899
00:29:45,005 --> 00:29:46,606
SO MAYBE A YEAR OR SO AFTER WE

900
00:29:46,606 --> 00:29:47,274
ACHIEVED LAUNCH.

901
00:29:47,274 --> 00:29:49,776
AS YOU CAN SEE ON THE RIGHT,

902
00:29:49,776 --> 00:29:52,646
WE'RE IN THE HOCKEY STICK PART

903
00:29:52,646 --> 00:29:53,513
OF THE PUBLICATION CURVE IF YOU

904
00:29:53,513 --> 00:29:54,948
WILL WITH NEARLY 500

905
00:29:54,948 --> 00:29:56,450
PUBLICATIONS TO DATE.

906
00:29:56,450 --> 00:29:57,551
THIS YEAR I'M GOING TO GUESS IT

907
00:29:57,551 --> 00:29:59,953
WILL BE CLOSE TO 8 OR 900

908
00:29:59,953 --> 00:30:02,055
PUBLICATIONS FROM OUR DATA

909
00:30:02,055 --> 00:30:04,991
SOMETIME BY THE END OF 2024, SO

910
00:30:04,991 --> 00:30:07,093
A REAL GEOMETRIC GROWTH IN

911
00:30:07,093 --> 00:30:09,629
PUBLICATIONS AND ON THE LEFT IS

912
00:30:09,629 --> 00:30:13,433
JUST A VERY BRIEF SNAPSHOT OF

913
00:30:13,433 --> 00:30:14,734
THE KINDS OF PAPERS THAT ARE NOW

914
00:30:14,734 --> 00:30:17,704
BEING GENERATED FROM OUR DATA.

915
00:30:17,704 --> 00:30:19,439
SOME OF YOU MAY BE AWARE IN THE

916
00:30:19,439 --> 00:30:22,609
UPPER LEFT-HAND CORNER OF THE

917
00:30:22,609 --> 00:30:23,109
APOL1 STORY, IN AFRICAN

918
00:30:23,109 --> 00:30:24,244
AMERICANS WITH CHRONIC KIDNEY

919
00:30:24,244 --> 00:30:27,614
DISEASE AND DATA FROM THE

920
00:30:27,614 --> 00:30:29,616
PROGRAM HAS ELUCIDATED

921
00:30:29,616 --> 00:30:31,351
PROTECTIVE GENETIC VARIANTS THAT

922
00:30:31,351 --> 00:30:34,087
EXIST IN THE APO1 GENE THAT

923
00:30:34,087 --> 00:30:37,624
COULD POTENTIALLY BE USED AS

924
00:30:37,624 --> 00:30:38,792
DRUG TARGETS TO MITIGATE THE

925
00:30:38,792 --> 00:30:40,427
RISK OF CHRONIC KIDNEY DISEASE

926
00:30:40,427 --> 00:30:41,094
IN AFRICAN AMERICANS.

927
00:30:41,094 --> 00:30:42,629
THERE'S ALSO A DEPTH OF RESEARCH

928
00:30:42,629 --> 00:30:46,466
IN GENETIC VARIATION ACROSS

929
00:30:46,466 --> 00:30:49,503
INDIVIDUALS FROM NON-EUROPEAN

930
00:30:49,503 --> 00:30:51,605
ANCESTRIES, BUT THE GENE

931
00:30:51,605 --> 00:30:52,973
INVOLVED IN CARDIOVASCULAR

932
00:30:52,973 --> 00:30:53,406
DISEASE.

933
00:30:53,406 --> 00:30:54,774
EVEN IF YOU LOOK AT THE ONE IN

934
00:30:54,774 --> 00:30:56,977
THE LOWER RIGHT-HAND CURVE, THE

935
00:30:56,977 --> 00:30:59,145
UTILITY OF FITBIT DATA TO

936
00:30:59,145 --> 00:31:01,448
UNDERSTAND HOW STEP COUNTS CAN

937
00:31:01,448 --> 00:31:04,384
ACTUALLY MITIGATE MOST

938
00:31:04,384 --> 00:31:05,919
INCIDENCES OF CHRONIC DISEASES

939
00:31:05,919 --> 00:31:06,920
USING ELECTRONIC HEALTH RECORD

940
00:31:06,920 --> 00:31:07,921
DATA HAS BEEN PUBLISHED.

941
00:31:07,921 --> 00:31:09,523
AND THESE ARE SLOWLY MAKING --

942
00:31:09,523 --> 00:31:10,957
SOME OF THESE DATA ARE SLOWLY

943
00:31:10,957 --> 00:31:12,459
MAKING THEIR WAY INTO CLINICAL

944
00:31:12,459 --> 00:31:13,827
USE AND TO CLINICAL GUIDELINES,

945
00:31:13,827 --> 00:31:16,763
WHICH I THINK WILL BE A VERY

946
00:31:16,763 --> 00:31:18,632
DEMONSTRABLE IMPACT OF THE

947
00:31:18,632 --> 00:31:19,633
PROGRAM.

948
00:31:19,633 --> 00:31:20,934
I ALSO WANTED TO SHARE WITH YOU

949
00:31:20,934 --> 00:31:22,602
ANOTHER AREA WHICH WE SEE AS

950
00:31:22,602 --> 00:31:23,770
STRATEGIC AND IMPORTANT FOR THE

951
00:31:23,770 --> 00:31:24,871
FUTURE OF THE PROGRAM, AND THAT

952
00:31:24,871 --> 00:31:28,241
IS THE POTENTIAL IMPACT OF THE

953
00:31:28,241 --> 00:31:30,877
ALL-OF-US DATA AND THE ALL-OF-US

954
00:31:30,877 --> 00:31:32,212
PROGRAM AS A PLATFORM FOR

955
00:31:32,212 --> 00:31:35,682
ENROLLMENT IN CLINICAL TRIAL.

956
00:31:35,682 --> 00:31:38,118
SO WHAT YOU SEE HERE IS A PAPER

957
00:31:38,118 --> 00:31:42,355
PUBLISHED EARLIER THIS YEAR IN

958
00:31:42,355 --> 00:31:44,491
JAMIA, WHICH IS A PHENOTYPE-WIDE

959
00:31:44,491 --> 00:31:46,192
ASSOCIATION STUDY USING

960
00:31:46,192 --> 00:31:48,295
ALL-OF-US ELECTRONIC HEALTH

961
00:31:48,295 --> 00:31:50,497
RECORD DATA, FEATURES OF DISEASE

962
00:31:50,497 --> 00:31:51,898
THAT INDIVIDUALS IN OUR PROGRAM

963
00:31:51,898 --> 00:31:58,238
HAVE MANIFEST, THAT HAS BEEN

964
00:31:58,238 --> 00:32:01,174
DONE ACROSS 18,600 CLINICAL

965
00:32:01,174 --> 00:32:03,243
TRIALS IN CLINICALTRIALS.GOV

966
00:32:03,243 --> 00:32:05,011
USING ATTRIBUTES OF THE FEATURES

967
00:32:05,011 --> 00:32:07,514
OF ENROLLMENT, INCLUSION AND

968
00:32:07,514 --> 00:32:09,182
EXCLUSION CRITERIA, TO MAP THE

969
00:32:09,182 --> 00:32:11,585
FEATURES OF THE ALL-OF-US

970
00:32:11,585 --> 00:32:13,019
PHENOTYPES ON TO THE CLINICAL

971
00:32:13,019 --> 00:32:15,221
TRIALS THAT ARE IN

972
00:32:15,221 --> 00:32:15,855
CLINICALTRIALS.GOV.

973
00:32:15,855 --> 00:32:18,825
SO WHAT YOU CAN SEE IN THIS --

974
00:32:18,825 --> 00:32:21,194
WE CALL THIS IS MANHATTAN PLOT,

975
00:32:21,194 --> 00:32:23,530
BUT WHAT YOU SEE IS THERE ARE A

976
00:32:23,530 --> 00:32:24,264
PREPONDERANCE OF INDIVIDUALS

977
00:32:24,264 --> 00:32:30,403
THAT WOULD BE ALIGNED WITH

978
00:32:30,403 --> 00:32:31,271
CLINICAL TRIALS FOR MENTAL

979
00:32:31,271 --> 00:32:33,740
HEALTH DISORDERS, FOR ANXIETY,

980
00:32:33,740 --> 00:32:34,774
MAJOR DEPRESSION AND DEPRESSION,

981
00:32:34,774 --> 00:32:36,142
FOR CANCER TRIALS AS YOU CAN SEE

982
00:32:36,142 --> 00:32:37,010
ON THE LEFT-HAND SIDE, TRIALS

983
00:32:37,010 --> 00:32:38,411
THAT ARE ENROLLING INDIVIDUALS

984
00:32:38,411 --> 00:32:43,216
WITH PAIN OR OTHER KRON

985
00:32:43,216 --> 00:32:45,518
CONDITIONS. CHRONIC

986
00:32:45,518 --> 00:32:47,821
CONDITIONS.

987
00:32:47,821 --> 00:32:50,090
SO WHILE WE HAVEN'T OPENED, I

988
00:32:50,090 --> 00:32:51,191
THINK THE DATA THAT'S IN THIS

989
00:32:51,191 --> 00:32:53,393
SLIDE REALLY PORE TENDS THE

990
00:32:53,393 --> 00:32:55,261
POTENTIAL VALUE OF ACCELERATED

991
00:32:55,261 --> 00:32:56,496
ENROLLMENT IN CLINICAL TRIALS

992
00:32:56,496 --> 00:32:59,666
USING THE FEATURES, CLINICAL,

993
00:32:59,666 --> 00:33:00,634
POTENTIALLY EVEN GENETIC

994
00:33:00,634 --> 00:33:01,301
FEATURES OF INDIVIDUALS IN THE

995
00:33:01,301 --> 00:33:06,840
PROGRAM TO BE RECRUITED INTO

996
00:33:06,840 --> 00:33:07,574
NATIONAL CLINICAL TRIALS BOTH AT

997
00:33:07,574 --> 00:33:11,244
THE NIH AND AS WELL AS OUTSIDE.

998
00:33:11,244 --> 00:33:13,013
SO I WANTED TO ALSO TELL YOU A

999
00:33:13,013 --> 00:33:17,417
LITTLE BIT WHERE WE'RE HEADED

1000
00:33:17,417 --> 00:33:18,685
SCIENTIFICALLY OVER THE NEXT

1001
00:33:18,685 --> 00:33:20,453
SEVERAL YEARS.

1002
00:33:20,453 --> 00:33:22,522
SO ONE OF THE MAJOR STRATEGIES

1003
00:33:22,522 --> 00:33:23,657
FOR THE PROGRAM IS SOMETHING WE

1004
00:33:23,657 --> 00:33:28,328
CALL ABC LA ANCILLARY STUDIES, Y

1005
00:33:28,328 --> 00:33:30,296
THAT ADDS A NEW STRATEGIC DATA

1006
00:33:30,296 --> 00:33:31,931
TYPE TO THE CORE DATA OF THE

1007
00:33:31,931 --> 00:33:33,700
PROGRAM.

1008
00:33:33,700 --> 00:33:35,568
SO THE TRIANGLE ON THE LEFT IS

1009
00:33:35,568 --> 00:33:36,770
MEANT TO ILLUSTRATE IN THE DARK

1010
00:33:36,770 --> 00:33:38,338
BLUE, THAT'S THE CORE DATASET

1011
00:33:38,338 --> 00:33:39,939
THAT I SHOWED YOU IN AN EARLIER

1012
00:33:39,939 --> 00:33:41,374
SLIDE, AND THEN AS WE DO

1013
00:33:41,374 --> 00:33:42,909
ANCILLARY STUDIES, WE GENERATE

1014
00:33:42,909 --> 00:33:44,511
DATA THAT IS SEQUENTIALLY ADDED

1015
00:33:44,511 --> 00:33:45,712
TO THE CORE DATA AND ACCESSIBLE

1016
00:33:45,712 --> 00:33:50,116
TO THE RESEARCHER COMMUNITY.

1017
00:33:50,116 --> 00:33:51,217
ILLUSTRATED HERE ARE THREE

1018
00:33:51,217 --> 00:33:52,085
ANCILLARY STUDIES THAT HAVE

1019
00:33:52,085 --> 00:33:56,022
EITHER BEEN COMPLETED OR ARE

1020
00:33:56,022 --> 00:33:58,058
UNDERWAY WITH DIFFERING DEGREES

1021
00:33:58,058 --> 00:33:58,658
OF COMPLEXITY.

1022
00:33:58,658 --> 00:34:01,061
SO DURING THE -- JUST AFTER THE

1023
00:34:01,061 --> 00:34:02,729
PANDEMIC, I SHOULD SAY, WE

1024
00:34:02,729 --> 00:34:06,232
ACCESSED THE BIOSPECIMENS IN OUR

1025
00:34:06,232 --> 00:34:10,503
BIOREPOSITORY TO DO  A COVID

1026
00:34:10,503 --> 00:34:12,005
SEROLOGY STUDY WHICH HAPPENED TO

1027
00:34:12,005 --> 00:34:14,841
SHOW THAT THE SARS-COV-2 VIRUS

1028
00:34:14,841 --> 00:34:17,077
AT LEAST ANTIBODIES FOR THOSE IN

1029
00:34:17,077 --> 00:34:20,113
OUR COHORT WHO WERE PRESENT IN

1030
00:34:20,113 --> 00:34:21,581
2019 WELL BEFORE THE CDC

1031
00:34:21,581 --> 00:34:23,717
DECLARED THAT VIRUS WAS -- HAD

1032
00:34:23,717 --> 00:34:26,119
REACHED A PANDEMIC IN THE UNITED

1033
00:34:26,119 --> 00:34:27,654
STATES.

1034
00:34:27,654 --> 00:34:29,255
THE NEXT ONE CALLED EXPLORING

1035
00:34:29,255 --> 00:34:30,824
THE MIND IS A STUDY THAT WE'RE

1036
00:34:30,824 --> 00:34:31,958
DOING WITH THE NATIONAL

1037
00:34:31,958 --> 00:34:36,296
INSTITUTE OF MENTAL HEALTH USING

1038
00:34:36,296 --> 00:34:38,364
AN APP-BASED PLATFORM FOR

1039
00:34:38,364 --> 00:34:39,265
COGNITIVE TESTING OF

1040
00:34:39,265 --> 00:34:40,567
PARTICIPANTS.

1041
00:34:40,567 --> 00:34:41,434
NEARLY 200,000 PEOPLE HAVE

1042
00:34:41,434 --> 00:34:46,239
COMPLETED THE EXPLORING THE MIND

1043
00:34:46,239 --> 00:34:47,707
ANCILLARY STUDY AND THAT DATA IS

1044
00:34:47,707 --> 00:34:51,478
MOVING SLOWLY INTO OUR DATA

1045
00:34:51,478 --> 00:34:52,245
REPOSITORY ACCESSIBLE TO

1046
00:34:52,245 --> 00:34:52,712
RESEARCHERS.

1047
00:34:52,712 --> 00:34:53,913
AND MAYBE ONE THAT YOU'VE HEARD

1048
00:34:53,913 --> 00:34:57,550
OF BECAUSE ON THE RIGHT YOU

1049
00:34:57,550 --> 00:34:59,285
MIGHT NOTICE THAT'S A SNAPSHOT

1050
00:34:59,285 --> 00:35:01,321
OF A VIDEO FROM "GOOD MORNING

1051
00:35:01,321 --> 00:35:04,190
AMERICA" RECENTLY FEATURED ON

1052
00:35:04,190 --> 00:35:05,391
"GOOD MORNING AMERICA," WAS THE

1053
00:35:05,391 --> 00:35:09,929
NUTRITION FOR PRECISION HEALTH.

1054
00:35:09,929 --> 00:35:12,165
THIS IS A COMMON FUND SUPPORTED

1055
00:35:12,165 --> 00:35:13,533
STUDY AS WELL AS A STUDY THAT IS

1056
00:35:13,533 --> 00:35:15,168
USING SUPPORT FROM ABOUT 16

1057
00:35:15,168 --> 00:35:18,204
INSTITUTES AND CENTERS WHICH IS

1058
00:35:18,204 --> 00:35:21,407
ENROLLING 10,000 INDIVIDUALS TO

1059
00:35:21,407 --> 00:35:22,609
DO EXTENSIVE STUDIES ON DIET

1060
00:35:22,609 --> 00:35:25,111
WITH THE GOAL TO DEVELOP

1061
00:35:25,111 --> 00:35:26,646
ALGORITHMS THAT WILL PREDICT THE

1062
00:35:26,646 --> 00:35:27,347
NUTRITIONAL IMPACT ON

1063
00:35:27,347 --> 00:35:28,982
INDIVIDUALS, REALLY TAKING AI

1064
00:35:28,982 --> 00:35:32,919
AND MULTIPLE MEASURES WHETHER IT

1065
00:35:32,919 --> 00:35:34,554
COMES TO DIETARY INTAKE AND

1066
00:35:34,554 --> 00:35:36,956
OUTPUT TO BETTER PERSONALIZE

1067
00:35:36,956 --> 00:35:38,057
DIETARY RECOMMENDATIONS FOR

1068
00:35:38,057 --> 00:35:38,691
INDIVIDUALS.

1069
00:35:38,691 --> 00:35:40,927
THIS IS CALLED NUTRITION FOR

1070
00:35:40,927 --> 00:35:43,096
PRECISION HEALTH, AND THAT STUDY

1071
00:35:43,096 --> 00:35:47,367
WILL LIKELY BE COMPLETED IN 2026

1072
00:35:47,367 --> 00:35:48,234
OR 2027.

1073
00:35:48,234 --> 00:35:49,435
IT'S CLEARLY ONE OF THE LARGEST

1074
00:35:49,435 --> 00:35:54,374
DIETARY STUDIES EVER LAUNCHED

1075
00:35:54,374 --> 00:35:56,342
ACROSS THE GLOBE AND HOPEFULLY

1076
00:35:56,342 --> 00:35:57,443
WILL GARNER REALLY IMPORTANT

1077
00:35:57,443 --> 00:35:58,044
INSIGHTS FOR INDIVIDUALS IN

1078
00:35:58,044 --> 00:35:59,746
TERMS OF FOOD INTAKE AND HEALTH

1079
00:35:59,746 --> 00:36:05,118
AS A RESULT OF THIS STUDY.

1080
00:36:05,118 --> 00:36:06,886
ANOTHER AREA WE'RE SUPER

1081
00:36:06,886 --> 00:36:08,421
INTERESTED IN IS THE AREA OF

1082
00:36:08,421 --> 00:36:09,355
CLIMATE AND ENVIRONMENT ON

1083
00:36:09,355 --> 00:36:10,290
HEALTH AND DISEASE, AND WE'RE

1084
00:36:10,290 --> 00:36:11,591
WORKING VERY CLOSELY WITH THE

1085
00:36:11,591 --> 00:36:12,325
NATIONAL INSTITUTE OF

1086
00:36:12,325 --> 00:36:16,529
ENVIRONMENTAL HEALTH SCIENCES.

1087
00:36:16,529 --> 00:36:18,198
THIS IS A COMPLICATED SLIDE.

1088
00:36:18,198 --> 00:36:21,167
FIRST THING WE'RE DOING IS WE'RE

1089
00:36:21,167 --> 00:36:22,468
ESTABLISHING LINKAGES TO

1090
00:36:22,468 --> 00:36:24,571
ENVIRONMENTAL DATA STARTING WITH

1091
00:36:24,571 --> 00:36:26,940
THE CDC'S ENVIRONMENTAL JUSTICE

1092
00:36:26,940 --> 00:36:28,908
INDEX TO INDIVIDUALS IN THE

1093
00:36:28,908 --> 00:36:33,880
ALL-OF-US RESEARCH PROGRAM USING

1094
00:36:33,880 --> 00:36:35,148
GEOCODES, THREE DIGIT AND

1095
00:36:35,148 --> 00:36:38,218
EVENTUALLY FIVE DIGIT ZIP CODE

1096
00:36:38,218 --> 00:36:38,618
INFORMATION.

1097
00:36:38,618 --> 00:36:40,086
IN ADDITION I MENTIONED WE

1098
00:36:40,086 --> 00:36:40,954
ACQUIRED DATA ON SOCIAL

1099
00:36:40,954 --> 00:36:42,155
DETERMINANTS OF HEALTH, WHICH WE

1100
00:36:42,155 --> 00:36:44,691
VIEW AS A REALLY IMPORTANT

1101
00:36:44,691 --> 00:36:45,658
ENVIRONMENTAL EXPOSURE THAT

1102
00:36:45,658 --> 00:36:47,727
COULD IMPACT HEALTH AND DISEASE.

1103
00:36:47,727 --> 00:36:49,596
ABOUT 150,000 PEOPLE HAVE

1104
00:36:49,596 --> 00:36:51,798
COMPLETED THE SOCIAL

1105
00:36:51,798 --> 00:36:53,433
DETERMINANTS OF HEALTH SURVEY

1106
00:36:53,433 --> 00:36:54,033
INSTRUMENT WHICH IS STILL OUT

1107
00:36:54,033 --> 00:36:54,901
THERE AND BEING ANSWERED.

1108
00:36:54,901 --> 00:36:56,369
I MENTIONED EARLIER WE WILL

1109
00:36:56,369 --> 00:36:58,905
LAUNCH AN ENVIRONMENTAL EXPOSURE

1110
00:36:58,905 --> 00:36:59,939
AND OCCUPATIONAL HEALTH SURVEY

1111
00:36:59,939 --> 00:37:00,273
IN 2025.

1112
00:37:00,273 --> 00:37:03,076
SO THAT'S THE FOUNDATIONAL DATA

1113
00:37:03,076 --> 00:37:04,711
IN THE COHORT.

1114
00:37:04,711 --> 00:37:07,680
EVENTUALLY WE WILL BE USING THE

1115
00:37:07,680 --> 00:37:11,084
GEOCODING AN GIS DATA TO LINK TO

1116
00:37:11,084 --> 00:37:12,719
ANOTHER PUBLICLY AVAILABLE

1117
00:37:12,719 --> 00:37:15,121
DATASETS THAT CLEARLY WILL HAVE

1118
00:37:15,121 --> 00:37:16,923
IMPACT ON INDIVIDUALS IN TERMS

1119
00:37:16,923 --> 00:37:18,524
OF EXPOSURES AND POTENTIALLY ON

1120
00:37:18,524 --> 00:37:20,393
HEALTH OUTCOMES, SO THAT'S

1121
00:37:20,393 --> 00:37:21,494
WHAT'S ILLUSTRATED IN THE

1122
00:37:21,494 --> 00:37:22,595
MIDDLE, AND AGAIN, THAT'S WORK

1123
00:37:22,595 --> 00:37:23,796
THAT'S BEING DONE VERY CLOSELY

1124
00:37:23,796 --> 00:37:24,898
WITH THE NATIONAL INSTITUTE OF

1125
00:37:24,898 --> 00:37:27,967
ENVIRONMENTAL HEALTH SCIENCES.

1126
00:37:27,967 --> 00:37:30,937
THEN ON THE RIGHT IS A SAMPLING

1127
00:37:30,937 --> 00:37:31,671
STUDY.

1128
00:37:31,671 --> 00:37:36,843
WHAT WE CALL EXPOSE OMICS AND

1129
00:37:36,843 --> 00:37:39,012
HEALTH, A SNAPSHOT OF THE

1130
00:37:39,012 --> 00:37:42,081
METABALOME, THE METABOLITES IN

1131
00:37:42,081 --> 00:37:45,018
BLOOD USING HIGH RESOLUTION MASS

1132
00:37:45,018 --> 00:37:45,818
SPECTROSCOPY, AND WE'RE STARTING

1133
00:37:45,818 --> 00:37:47,954
OFF WITH A PILOT STUDY IN

1134
00:37:47,954 --> 00:37:52,358
INDIVIDUALS WITH INCIDENT TYPE E

1135
00:37:52,358 --> 00:37:57,830
EXPOSOME OR THE METABOLITES THAT

1136
00:37:57,830 --> 00:37:59,265
WE MEASURE IN THESE SAMPLES ARE

1137
00:37:59,265 --> 00:38:03,202
CORRELATING WITH THE EXPOSURES

1138
00:38:03,202 --> 00:38:04,304
THAT THEY'VE HAD AND INCIDENCE

1139
00:38:04,304 --> 00:38:05,204
OF DISEASE THEY WILL SEE

1140
00:38:05,204 --> 00:38:05,872
SOMETIME IN THE FUTURE.

1141
00:38:05,872 --> 00:38:08,141
WE'RE HOPING TO EXPAND THIS

1142
00:38:08,141 --> 00:38:09,375
BEYOND TYPE 2 DIABETES TO OTHER

1143
00:38:09,375 --> 00:38:11,878
MAJOR CAUSES OF MORBIDITY AND

1144
00:38:11,878 --> 00:38:12,979
MORTALITY AND REALLY LEARNING

1145
00:38:12,979 --> 00:38:14,514
HOW THE ENVIRONMENT AND CLIMATE

1146
00:38:14,514 --> 00:38:18,685
ARE INFLUENCING THE INCIDENCE OF

1147
00:38:18,685 --> 00:38:20,320
THESE DISEASES AND HOPEFULLY

1148
00:38:20,320 --> 00:38:21,955
DEVELOPING POLICIES AND RISK

1149
00:38:21,955 --> 00:38:23,389
MITIGATION STRATEGIES TO PREVENT

1150
00:38:23,389 --> 00:38:24,824
THEM GOING FORWARD.

1151
00:38:24,824 --> 00:38:26,159
THIS SLIDE IS REALLY MEANT TO

1152
00:38:26,159 --> 00:38:27,393
ILLUSTRATE THE PIPELINE OF

1153
00:38:27,393 --> 00:38:31,364
ANCILLARY STUDIES THAT WE'RE IN

1154
00:38:31,364 --> 00:38:32,632
THE PROCESS OF EVALUATING OR

1155
00:38:32,632 --> 00:38:34,567
ACTUALLY DOING WITH OTHER NIH

1156
00:38:34,567 --> 00:38:35,601
INSTITUTES, CENTERS AND OFFICES.

1157
00:38:35,601 --> 00:38:37,637
SO I MENTIONED ON THE RIGHT THE

1158
00:38:37,637 --> 00:38:44,544
COVID SEROL, OH GY STUDY, THE

1159
00:38:44,544 --> 00:38:45,778
NUTRITION FORM -- THE ONE I WANT

1160
00:38:45,778 --> 00:38:46,879
TO HIGHLIGHT FOR YOU TODAY IS

1161
00:38:46,879 --> 00:38:48,848
THE GENOTYPE TO PHENOTYPE STUDY

1162
00:38:48,848 --> 00:38:51,484
WHICH IS BEING DONE AT THE

1163
00:38:51,484 --> 00:38:53,653
CLINICAL CENTER WITH

1164
00:38:53,653 --> 00:38:58,191
INVESTIGATORS FROM NHGRI THIS IS

1165
00:38:58,191 --> 00:39:04,731
BEING CHAMPIONED BY LES BISIKER,

1166
00:39:04,731 --> 00:39:06,265
TO LEARN HOW INDIVIDUALS WITH

1167
00:39:06,265 --> 00:39:08,468
PARTICULAR GENETIC BACKGROUNDS

1168
00:39:08,468 --> 00:39:09,702
EXPRESS PHENOTYPES ACROSS A

1169
00:39:09,702 --> 00:39:11,237
NUMBER OF DIFFERENT PHENOTYPES,

1170
00:39:11,237 --> 00:39:12,905
AREAS OF INVESTIGATION THAT THE

1171
00:39:12,905 --> 00:39:17,176
CLINICAL CENTER WILL OFFER.

1172
00:39:17,176 --> 00:39:19,579
ONE AREA OF SUPER IMPORTANCE TO

1173
00:39:19,579 --> 00:39:21,114
US IS TO UNDERSTAND WHAT WE CALL

1174
00:39:21,114 --> 00:39:24,217
LOSS OF FUNCTION VARIANTS.

1175
00:39:24,217 --> 00:39:26,853
THESE ARE GENETIC VARIANTS THAT

1176
00:39:26,853 --> 00:39:27,820
ELIMINATE OR REDUCE

1177
00:39:27,820 --> 00:39:28,421
SIGNIFICANTLY THE FUNCTION OF

1178
00:39:28,421 --> 00:39:31,791
THE GENES THAT THEY RESIDE IN.

1179
00:39:31,791 --> 00:39:33,626
THERE ARE INDIVIDUALS THAT HAVE

1180
00:39:33,626 --> 00:39:35,962
LOSS OF FUNCTION VARIANTS THAT

1181
00:39:35,962 --> 00:39:37,730
APPEAR TO BE COMPLETELY HEALTHY.

1182
00:39:37,730 --> 00:39:39,132
THAT'S AN INTERESTING GROUP FOR

1183
00:39:39,132 --> 00:39:40,433
US TO INVESTIGATE AND THERE ARE

1184
00:39:40,433 --> 00:39:43,202
INDIVIDUALS THAT HAVE LOSS OF

1185
00:39:43,202 --> 00:39:44,637
FUNCTION VARIANCE THAT MAY HAVE

1186
00:39:44,637 --> 00:39:49,976
BEEN MISDIAGNOSED BECAUSE THE

1187
00:39:49,976 --> 00:39:51,411
GENETIC VARIATION IS SO RARE.

1188
00:39:51,411 --> 00:39:52,645
SO WE'RE HOPING TO BRING PEOPLE

1189
00:39:52,645 --> 00:39:54,180
INTO THE CLINICAL CENTER WITH

1190
00:39:54,180 --> 00:39:56,149
PARTICULAR GENOTYPES AND REALLY

1191
00:39:56,149 --> 00:39:58,718
DO AN EXTENSIVE PHENOTYPIC

1192
00:39:58,718 --> 00:39:59,752
EVALUATION.

1193
00:39:59,752 --> 00:40:00,653
WE'RE ALSO COMMITTED TO DOING

1194
00:40:00,653 --> 00:40:02,055
THIS ACROSS THE DIVERSITY OF

1195
00:40:02,055 --> 00:40:04,690
RESEARCH PARTICIPANTS AND, AS I

1196
00:40:04,690 --> 00:40:07,460
MENTIONED, INDIVIDUALS WHO

1197
00:40:07,460 --> 00:40:10,730
APPEAR OTHERWISE HEL THREE BUT

1198
00:40:10,730 --> 00:40:14,767
HAVE DELETERIOUS GENETIC

1199
00:40:14,767 --> 00:40:20,139
BACKGROUNDS, BUT WE' MAYBE AN

1200
00:40:20,139 --> 00:40:21,140
EXAMPLE OF THE KIND OF WORK THAT

1201
00:40:21,140 --> 00:40:23,743
MIGHT GO ON IN THIS STUDY.

1202
00:40:23,743 --> 00:40:27,146
THIS IS AN EXAMPLE FROM A GENE

1203
00:40:27,146 --> 00:40:31,417
CALLED THE AB15 GENE, IF YOU

1204
00:40:31,417 --> 00:40:32,652
LOOK AT INDIVIDUALS WHO

1205
00:40:32,652 --> 00:40:33,619
ESSENTIALLY HAVE NO

1206
00:40:33,619 --> 00:40:34,821
FUNCTIONALITY OF THAT GENE

1207
00:40:34,821 --> 00:40:35,822
ACROSS THEIR ELECTRONIC HEALTH

1208
00:40:35,822 --> 00:40:36,556
WORD.

1209
00:40:36,556 --> 00:40:39,992
THIS IS ALSO A PHEWAS STUDY

1210
00:40:39,992 --> 00:40:40,860
ASKING THE QUESTION WHAT

1211
00:40:40,860 --> 00:40:42,662
CLINICAL KNEE TOURS IN THE

1212
00:40:42,662 --> 00:40:44,997
ELECTRONIC MEDICAL RECORD ARE

1213
00:40:44,997 --> 00:40:46,499
ASSOCIATED WITH THE LOSS OF

1214
00:40:46,499 --> 00:40:47,400
FUNCTION OF THIS GENE.

1215
00:40:47,400 --> 00:40:52,805
YOU CAN SEE THAT IT SPANS A

1216
00:40:52,805 --> 00:40:54,307
SPECTRUM OF POSSIBLE PHENOTYPES

1217
00:40:54,307 --> 00:40:58,377
FROM METABOLIC DISEASE TO

1218
00:40:58,377 --> 00:41:01,247
VASCULAR DISEASE TO NEPHROLOGY

1219
00:41:01,247 --> 00:41:02,748
AND EVEN NEUROLOGIC DISEASE.

1220
00:41:02,748 --> 00:41:04,784
THIS GENE WAS ORIGINALLY

1221
00:41:04,784 --> 00:41:06,853
DISCOVERED AS A GENE FOR LIPID

1222
00:41:06,853 --> 00:41:07,987
METABOLISM, SO CLEARLY IT HAS

1223
00:41:07,987 --> 00:41:09,222
THE POTENTIAL TO HAVE OTHER

1224
00:41:09,222 --> 00:41:13,759
IMPACTS OUTSIDE OF THE AREA

1225
00:41:13,759 --> 00:41:15,194
WHICH IT WAS ORIGINALLY

1226
00:41:15,194 --> 00:41:16,729
DISCOVERS SO THIS WAS IN OUR

1227
00:41:16,729 --> 00:41:18,664
MINDS ONE OF THE REALLY

1228
00:41:18,664 --> 00:41:20,099
IMPORTANT WAYS THAT THE CLINICAL

1229
00:41:20,099 --> 00:41:22,602
CENTER CAN MEDIATE OUR

1230
00:41:22,602 --> 00:41:24,036
UNDERSTANDING OF THE

1231
00:41:24,036 --> 00:41:25,238
RELATIONSHIP BETWEEN GENOTYPES

1232
00:41:25,238 --> 00:41:26,639
AND PHENOTYPES.

1233
00:41:26,639 --> 00:41:28,574
AGAIN I'M NOT SURE PEOPLE WITH

1234
00:41:28,574 --> 00:41:29,542
THIS PARTICULAR GENETIC

1235
00:41:29,542 --> 00:41:31,177
BACKGROUND WILL BE SELECTED FOR

1236
00:41:31,177 --> 00:41:33,279
THIS STUDY, BUT I JUST WANTED TO

1237
00:41:33,279 --> 00:41:35,481
HIGHLIGHT THIS IS HOW WE USE THE

1238
00:41:35,481 --> 00:41:37,216
PHEWAS STUDIES TO BEGIN TO MATCH

1239
00:41:37,216 --> 00:41:39,318
THE WAY THE CLINICAL CENTER

1240
00:41:39,318 --> 00:41:42,822
WOULD EVALUATE INDIVIDUALS WITH

1241
00:41:42,822 --> 00:41:44,790
THE INFORMATION WE HAVE FROM

1242
00:41:44,790 --> 00:41:45,591
THEIR ELECTRONIC HEALTH RECORDS.

1243
00:41:45,591 --> 00:41:46,893
I MENTIONED RESILIENCE.

1244
00:41:46,893 --> 00:41:50,196
I WANTED TO JUST HIGHLIGHT THE

1245
00:41:50,196 --> 00:41:51,497
FACT THAT THERE ARE A LOT OF

1246
00:41:51,497 --> 00:41:55,001
PEOPLE AS THIS STUDY FROM 2016

1247
00:41:55,001 --> 00:41:59,505
ILLUSTRATES THAT HARBOR GENETIC

1248
00:41:59,505 --> 00:42:01,807
BACKGROUNDS THAT MAY HAVE BEEN

1249
00:42:01,807 --> 00:42:05,011
SO DELETERIOUS, THEY SHOULDN'T

1250
00:42:05,011 --> 00:42:06,946
EVEN BE ALIVE, OR THEY SHOULD

1251
00:42:06,946 --> 00:42:08,281
HAVE VERY PROFOUND SYNDROMES

1252
00:42:08,281 --> 00:42:09,248
THAT THEY DON'T HAVE.

1253
00:42:09,248 --> 00:42:13,519
SO WE KNOW THAT THERE ARE

1254
00:42:13,519 --> 00:42:15,488
GENETICS THAT COUNTER THE

1255
00:42:15,488 --> 00:42:16,923
DELETERIOUS EFFECTS OF GENETIC

1256
00:42:16,923 --> 00:42:18,591
BACKGROUNDS, SO THAT'S GENETIC

1257
00:42:18,591 --> 00:42:19,225
RESILIENCE.

1258
00:42:19,225 --> 00:42:20,526
AS A MATTER OF FACT, IF YOU WERE

1259
00:42:20,526 --> 00:42:21,661
READING THE NEWS IN THE LAST FEW

1260
00:42:21,661 --> 00:42:23,529
DAYS AND MAYBE READING THE NEW

1261
00:42:23,529 --> 00:42:24,197
ENGLAND JOURNAL, YOU MAY HAVE

1262
00:42:24,197 --> 00:42:30,970
SEEN A PAPER THAT HIGHLIGHTED

1263
00:42:30,970 --> 00:42:37,009
THE APOE 3 GENE, IT'S CALLED THE

1264
00:42:37,009 --> 00:42:40,279
APOE 3 CHRIST CHURCH VARIANT IN

1265
00:42:40,279 --> 00:42:41,681
ALZHEIMER'S DISEASE, INDIVIDUALS

1266
00:42:41,681 --> 00:42:44,050
WHO HARBOR THAT VARIANT ACTUALLY

1267
00:42:44,050 --> 00:42:45,117
DO NOT DEVELOP ALZHEIMER'S

1268
00:42:45,117 --> 00:42:47,620
DISEASE AT THE SAME CADENCE AS

1269
00:42:47,620 --> 00:42:48,821
INDIVIDUALS FROM -- AS

1270
00:42:48,821 --> 00:42:50,890
INDIVIDUALS WHO DO NOT HAVE THAT

1271
00:42:50,890 --> 00:42:52,458
VARIANT, SO THERE ARE DEFINITELY

1272
00:42:52,458 --> 00:42:55,194
PROTECTIVE ALLELES AND GENES

1273
00:42:55,194 --> 00:42:56,562
THAT CAN BE BETTER UNDERSTOOD.

1274
00:42:56,562 --> 00:43:00,666
I THINK THE CLINICAL CENTERS

1275
00:43:00,666 --> 00:43:03,102
DEPTH OF PHENOTYPIC EVALUATIONS

1276
00:43:03,102 --> 00:43:04,537
IN INDIVIDUALS THAT APPEAR TO BE

1277
00:43:04,537 --> 00:43:06,973
RESILIENT WILL GIVE US, I THINK,

1278
00:43:06,973 --> 00:43:08,507
NUANCED INSIGHTS INTO THOSE

1279
00:43:08,507 --> 00:43:13,879
PHENOTYPES BECAUSE OF THE

1280
00:43:13,879 --> 00:43:14,747
CLINICAL TESTING THAT THEY WILL

1281
00:43:14,747 --> 00:43:17,650
DO AT THE CLINICAL CENTER.

1282
00:43:17,650 --> 00:43:19,719
SO JUST IN CLOSING, I THOUGHT

1283
00:43:19,719 --> 00:43:23,089
I'D OPEN UP YOUR -- OPEN THIS UP

1284
00:43:23,089 --> 00:43:24,190
FOR DISCUSSION, OF COURSE, BUT I

1285
00:43:24,190 --> 00:43:25,458
FEEL LIKE THERE ARE A NUMBER OF

1286
00:43:25,458 --> 00:43:26,592
OPPORTUNITIES FOR THE CLINICAL

1287
00:43:26,592 --> 00:43:30,296
CENTER AND ALL-OF-US TO PARTNER.

1288
00:43:30,296 --> 00:43:31,163
I'VE ALREADY MENTIONED THE

1289
00:43:31,163 --> 00:43:36,168
ANCILLARY STUDIES, WE'RE DOING

1290
00:43:36,168 --> 00:43:37,970
THE GENOTYPE TO PHENOTYPE STUDY

1291
00:43:37,970 --> 00:43:39,605
WITH NHGRI.

1292
00:43:39,605 --> 00:43:40,606
THERE'S ALSO CONTINUING WORK IN

1293
00:43:40,606 --> 00:43:44,110
THE GENETICS OF UNDIAGNOSED

1294
00:43:44,110 --> 00:43:45,645
DISEASES THAT CAN BE DONE AND

1295
00:43:45,645 --> 00:43:46,746
PARTICULARLY WITH THE RARE

1296
00:43:46,746 --> 00:43:50,249
DISEASE COMMUNITY AND THERE ARE

1297
00:43:50,249 --> 00:43:51,450
RARE DISEASE PARTICIPANTS IN OUR

1298
00:43:51,450 --> 00:43:54,854
DATASET.

1299
00:43:54,854 --> 00:43:56,756
WE ALSO ENVISION THE POSSIBILITY

1300
00:43:56,756 --> 00:43:59,158
OF CO-ENROLLMENT WITH CLINICAL

1301
00:43:59,158 --> 00:44:00,459
CENTER LED CLINICAL TRIALS AND

1302
00:44:00,459 --> 00:44:02,028
STUDIES, SO INDIVIDUALS COMING

1303
00:44:02,028 --> 00:44:03,362
INTO A CLINICAL CENTER STUDY

1304
00:44:03,362 --> 00:44:06,632
WOULD BE JOINTLY RECRUITED INTO

1305
00:44:06,632 --> 00:44:07,066
ALL-OF-US.

1306
00:44:07,066 --> 00:44:08,167
THAT WOULD GIVE THE CLINICAL

1307
00:44:08,167 --> 00:44:09,502
CENTER RESEARCHERS ACCESS TO

1308
00:44:09,502 --> 00:44:10,736
ALL-OF-US DATA THAT MIGHT

1309
00:44:10,736 --> 00:44:12,071
AUGMENT THE DATA THAT THEY'RE

1310
00:44:12,071 --> 00:44:14,340
ALREADY COLLECTING IN TERMS OF

1311
00:44:14,340 --> 00:44:16,208
SEQUENCING, SOCIAL DETERMINANTS

1312
00:44:16,208 --> 00:44:17,410
OF HEALTH, MANY OF THE OTHER

1313
00:44:17,410 --> 00:44:18,511
FEATURES OF THE ALL-OF-US

1314
00:44:18,511 --> 00:44:21,047
DATASET THAT I'VE TALKED TO YOU

1315
00:44:21,047 --> 00:44:21,647
ABOUT.

1316
00:44:21,647 --> 00:44:23,449
SO HOPEFULLY THAT'S ONE AREA

1317
00:44:23,449 --> 00:44:25,885
THAT WE WILL WORK ON WITH

1318
00:44:25,885 --> 00:44:26,819
INVESTIGATORS IN THE CLINICAL

1319
00:44:26,819 --> 00:44:29,822
CENTER, BUT ALSO AS PEOPLE LEAVE

1320
00:44:29,822 --> 00:44:31,157
THE CLINICAL CENTER IF THEY HAVE

1321
00:44:31,157 --> 00:44:32,391
ENROLLED IN ALL-OF-US, AND IF

1322
00:44:32,391 --> 00:44:34,226
THEY DO HAPPEN TO HAVE A RARE

1323
00:44:34,226 --> 00:44:37,296
DISEASE DIAGNOSIS, WE'LL BE IN A

1324
00:44:37,296 --> 00:44:38,597
GREAT POSITION, I THINK, TO

1325
00:44:38,597 --> 00:44:39,765
UNDERSTAND THE NATURAL HISTORY

1326
00:44:39,765 --> 00:44:43,035
OF THAT DISEASE IN THE LONG TERM

1327
00:44:43,035 --> 00:44:45,638
BY PROVIDING THE LONGITUDAL

1328
00:44:45,638 --> 00:44:46,872
FOLLOW-UP IN TANDEM WITH WHAT

1329
00:44:46,872 --> 00:44:49,909
THE CLINICAL CENTER IS DOING SO

1330
00:44:49,909 --> 00:44:51,143
THAT WE HAVE A BETTER

1331
00:44:51,143 --> 00:44:52,611
UNDERSTANDING OF HOW THESE RARE

1332
00:44:52,611 --> 00:44:53,479
DISEASES PLAY OUT OVER TIME AND

1333
00:44:53,479 --> 00:44:55,214
WHAT THE IMPACTS ARE OF

1334
00:44:55,214 --> 00:44:56,515
THERAPEUTIC OPTIONS THAT ARE

1335
00:44:56,515 --> 00:44:57,550
OFFERED TO PATIENTS WHEN THEY

1336
00:44:57,550 --> 00:45:01,821
COME THERE.

1337
00:45:01,821 --> 00:45:03,756
THEN FINALLY I THINK FOR ME,

1338
00:45:03,756 --> 00:45:06,058
THERE ARE OPPORTUNITIES TO

1339
00:45:06,058 --> 00:45:07,626
PARTNER IN INTRAMURAL RESEARCH.

1340
00:45:07,626 --> 00:45:09,161
WE HOPE THE ALL-OF-US DATASET

1341
00:45:09,161 --> 00:45:11,797
CAN PROVIDE A BASIS FOR TRAINING

1342
00:45:11,797 --> 00:45:13,032
EARLY STAGE INVESTIGATORS AND

1343
00:45:13,032 --> 00:45:14,166
OTHER TRAINEES THAT ARE COMING

1344
00:45:14,166 --> 00:45:17,002
THROUGH THE CLINICAL CENTER.

1345
00:45:17,002 --> 00:45:18,237
WE FEEL LIKE WE'VE DEVELOPED

1346
00:45:18,237 --> 00:45:20,005
SOME BEST PRACTICES,

1347
00:45:20,005 --> 00:45:22,074
PARTICULARLY WITH PARTICIPANT

1348
00:45:22,074 --> 00:45:23,275
ENGAGEMENT INCLUDING THE

1349
00:45:23,275 --> 00:45:24,377
PARTICIPANT VOICE IN THE WAY WE

1350
00:45:24,377 --> 00:45:25,511
DESIGN STUDIES.

1351
00:45:25,511 --> 00:45:28,347
AND THEN FINALLY, AS WE'VE GONE

1352
00:45:28,347 --> 00:45:29,749
DOWN THIS ROAD OF RETURNING

1353
00:45:29,749 --> 00:45:32,852
RESULTS TO PARTICIPANTS, WE FEEL

1354
00:45:32,852 --> 00:45:36,522
LIKE WE'RE UNIQUELY POSITIONED

1355
00:45:36,522 --> 00:45:38,324
TO UNDERSTAND HOW TO DO THIS AT

1356
00:45:38,324 --> 00:45:38,524
SCALE.

1357
00:45:38,524 --> 00:45:39,892
I'M SURE THE CLINICAL CENTER

1358
00:45:39,892 --> 00:45:40,993
TEAMS ARE RETURNING RESULTS TO

1359
00:45:40,993 --> 00:45:42,094
PATIENTS ALL THE TIME, BUT MAYBE

1360
00:45:42,094 --> 00:45:43,629
THERE'S SOME JOINT LEARNINGS

1361
00:45:43,629 --> 00:45:46,799
THERE THAT WE CAN WORK ON

1362
00:45:46,799 --> 00:45:48,401
TOGETHER AND IMPROVE THE WAY WE

1363
00:45:48,401 --> 00:45:49,702
DELIVER VALUE TO PATIENTS AND

1364
00:45:49,702 --> 00:45:50,035
PARTICIPANTS.

1365
00:45:50,035 --> 00:45:56,342
WITH THAT, I'LL STOP SHARING AND

1366
00:45:56,342 --> 00:45:57,643
MAYBE OPEN IT UP FOR SOME

1367
00:45:57,643 --> 00:45:58,577
QUESTIONS IF THERE'S SOME TIME

1368
00:45:58,577 --> 00:46:00,446
FOR THAT.

1369
00:46:00,446 --> 00:46:00,846
>> GREAT.

1370
00:46:00,846 --> 00:46:02,415
THANK YOU SO MUCH, AND AGAIN,

1371
00:46:02,415 --> 00:46:05,651
THANK YOU FOR TAKING TIME TO BE

1372
00:46:05,651 --> 00:46:10,856
WITH US WHILE YOU'RE TRAVELING.

1373
00:46:10,856 --> 00:46:12,191
DR. DEVASKAR, I SEE YOU HAVE A

1374
00:46:12,191 --> 00:46:12,992
QUESTION.

1375
00:46:12,992 --> 00:46:13,359
>> YES.

1376
00:46:13,359 --> 00:46:13,959
AM I HEARD?

1377
00:46:13,959 --> 00:46:14,660
CAN YOU HEAR ME?

1378
00:46:14,660 --> 00:46:15,227
>> YES.

1379
00:46:15,227 --> 00:46:15,461
>> YES.

1380
00:46:15,461 --> 00:46:16,128
>> THANK YOU.

1381
00:46:16,128 --> 00:46:18,631
THANK YOU, DR. GINSBURG.

1382
00:46:18,631 --> 00:46:21,600
THAT WAS A VERY IMPORTANT STUDY.

1383
00:46:21,600 --> 00:46:25,137
I GUESS MY QUESTION IS, I

1384
00:46:25,137 --> 00:46:27,306
THOUGHT THEY WERE GOING TO BE

1385
00:46:27,306 --> 00:46:31,477
ENROLLING 100,000 CHILDREN INTO

1386
00:46:31,477 --> 00:46:32,144
ALL-OF-US BECAUSE THEY'RE GOING

1387
00:46:32,144 --> 00:46:33,512
TO BE THE FUTURE POPULATION AND

1388
00:46:33,512 --> 00:46:35,114
THERE'S A LOT OF VARIANTS OF

1389
00:46:35,114 --> 00:46:36,348
UNKNOWN SIGNIFICANCE THAT HAS

1390
00:46:36,348 --> 00:46:37,416
PICKED UP IN CHILDREN.

1391
00:46:37,416 --> 00:46:39,185
I JUST WONDERED IF YOU COULD

1392
00:46:39,185 --> 00:46:40,052
SHED SOME LIGHT ON THAT.

1393
00:46:40,052 --> 00:46:40,820
THANK YOU.

1394
00:46:40,820 --> 00:46:44,356
>> ABSOLUTELY.

1395
00:46:44,356 --> 00:46:47,426
OUR PEDIATRIC PROTOCOL HAS BEEN

1396
00:46:47,426 --> 00:46:47,760
DEVELOPED.

1397
00:46:47,760 --> 00:46:49,528
WE ENROLLED 16 -- I KNOW THAT'S

1398
00:46:49,528 --> 00:46:52,164
A SMALL NUMBER -- JUST TO MAKE

1399
00:46:52,164 --> 00:46:53,899
SURE THAT EVERYTHING WAS WORKING

1400
00:46:53,899 --> 00:46:57,102
OKAY, SO WE HAVE 16 PEDIATRIC

1401
00:46:57,102 --> 00:46:58,304
PARTICIPANTS.

1402
00:46:58,304 --> 00:47:00,172
WE'VE RECRUITED SARAH VAN DREES

1403
00:47:00,172 --> 00:47:01,907
FROM VANDERBILT, DIRECTOR OF

1404
00:47:01,907 --> 00:47:02,374
PEDIATRICS.

1405
00:47:02,374 --> 00:47:04,376
OUR GOAL IS MORE THAN 100,000.

1406
00:47:04,376 --> 00:47:07,213
WE'D LIKE TO SEE CLOSER TO

1407
00:47:07,213 --> 00:47:08,981
150,000 STARTING WITH ZERO TO

1408
00:47:08,981 --> 00:47:10,516
6 YEARS OF AGE AS THE FIRST

1409
00:47:10,516 --> 00:47:11,817
COHORT, AND THEN GOING FROM 7 TO

1410
00:47:11,817 --> 00:47:16,989
13 AND THEN 13 TO 17.

1411
00:47:16,989 --> 00:47:18,357
SO ALL THAT -- THE STAGE IS SET

1412
00:47:18,357 --> 00:47:18,724
FOR THAT.

1413
00:47:18,724 --> 00:47:19,992
THE BIGGEST CHALLENGE WE HAVE

1414
00:47:19,992 --> 00:47:23,762
RIGHT NOW IS THE BUDGET.

1415
00:47:23,762 --> 00:47:28,067
I'LL JUST BE HONEST WITH YOU,

1416
00:47:28,067 --> 00:47:30,436
BECAUSE ON MARCH 22ND, WHEN THE

1417
00:47:30,436 --> 00:47:31,704
2024 BUDGET WAS PASSED,

1418
00:47:31,704 --> 00:47:33,272
ALL-OF-US RECEIVED A 34% BUDGET

1419
00:47:33,272 --> 00:47:37,843
CUT.

1420
00:47:37,843 --> 00:47:40,713
AND WE MAY BE LOOKING AT AN EVEN

1421
00:47:40,713 --> 00:47:42,014
GREATER BUDGET CUT FOR 2025.

1422
00:47:42,014 --> 00:47:43,249
SO WE FEEL THAT WE WANT TO

1423
00:47:43,249 --> 00:47:45,651
LAUNCH OUR PEDIATRIC -- WE'RE

1424
00:47:45,651 --> 00:47:46,852
READY, WHEN WE FEEL LIKE WE HAVE

1425
00:47:46,852 --> 00:47:52,458
THE RESOURCES TO COMPLETE THE

1426
00:47:52,458 --> 00:47:54,326
GOAL OF 100,000 OR MORE, THAT'S

1427
00:47:54,326 --> 00:47:55,628
WHEN WE'LL LAUNCH.

1428
00:47:55,628 --> 00:47:59,164
WE'RE VERY HOPEFUL THAT IN 2025

1429
00:47:59,164 --> 00:48:01,700
AND 2026, WE'LL BE POSITIONED TO

1430
00:48:01,700 --> 00:48:04,270
DO THIS AT THE SCALE THAT WE

1431
00:48:04,270 --> 00:48:05,771
WISH TO, BUT WE DON'T WANT TO

1432
00:48:05,771 --> 00:48:08,140
INITIATE A PROTOCOL THAT WE'LL

1433
00:48:08,140 --> 00:48:10,042
HAVE TO STOP, AND WE WANT TO

1434
00:48:10,042 --> 00:48:11,143
MAKE SURE WE HAVE THE FINANCIAL

1435
00:48:11,143 --> 00:48:12,344
BACKING IN ORDER TO DO SO.

1436
00:48:12,344 --> 00:48:13,846
SO WE'RE CAUTIOUSLY OPTIMISTIC

1437
00:48:13,846 --> 00:48:15,648
THAT WILL BE THE CASE.

1438
00:48:15,648 --> 00:48:17,016
LIKE I SAID THE PROTOCOL HAS

1439
00:48:17,016 --> 00:48:18,284
BEEN DESIGNED, MANY OF THE

1440
00:48:18,284 --> 00:48:22,388
SCIENTIFIC FEATURES ARE THERE,

1441
00:48:22,388 --> 00:48:23,789
AND WE'VE EVEN ENGAGED A NUMBER

1442
00:48:23,789 --> 00:48:24,990
OF SITES ACROSS THE COUNTRY THAT

1443
00:48:24,990 --> 00:48:26,425
ARE READY TO HELP US DO THAT

1444
00:48:26,425 --> 00:48:31,530
RECRUITMENT SO WE SHARE YOUR

1445
00:48:31,530 --> 00:48:34,633
VISION THAT THE EARLY CHILDHOOD

1446
00:48:34,633 --> 00:48:35,467
EXPOSURES ARE GOING TO DETERMINE

1447
00:48:35,467 --> 00:48:36,669
A LOT OF WHAT HAPPENS IN

1448
00:48:36,669 --> 00:48:37,670
ADULTHOOD, AND WE WANT TO BE AT

1449
00:48:37,670 --> 00:48:40,472
THE VANGUARD OF DEFINING THOSE

1450
00:48:40,472 --> 00:48:41,040
IF WE CAN.

1451
00:48:41,040 --> 00:48:44,677
>> THANK YOU.

1452
00:48:44,677 --> 00:48:45,344
>> MISS REEL?

1453
00:48:45,344 --> 00:48:47,746
>> THANK YOU, DR. SCHOR.

1454
00:48:47,746 --> 00:48:48,614
THANKS, DR. GINSBURG.

1455
00:48:48,614 --> 00:48:51,517
IT WAS AMAZING, YOUR

1456
00:48:51,517 --> 00:48:52,318
PRESENTATION WAS JUST

1457
00:48:52,318 --> 00:48:52,918
INCREDIBLE.

1458
00:48:52,918 --> 00:48:54,787
AND I'M GOING TO ASK SORT OF A

1459
00:48:54,787 --> 00:48:58,524
MUNDANE QUESTION, I THINK, BUT A

1460
00:48:58,524 --> 00:49:00,492
LITTLE ABOUT LOGISTICS.

1461
00:49:00,492 --> 00:49:01,794
WHEN THE NEWS BROKE THIS WEEK

1462
00:49:01,794 --> 00:49:03,929
ABOUT THE CHRIST CHURCH VARIANT,

1463
00:49:03,929 --> 00:49:06,765
IS THERE A TEAM OF INVESTIGATORS

1464
00:49:06,765 --> 00:49:11,704
WHO ARE WORKING WITH YOU AND

1465
00:49:11,704 --> 00:49:13,272
WITH THIS PROGRAM AND SUDDENLY

1466
00:49:13,272 --> 00:49:16,709
RESPOND OR REACT OR COME

1467
00:49:16,709 --> 00:49:18,877
TOGETHER AND SAY THIS IS

1468
00:49:18,877 --> 00:49:20,512
INCREDIBLE, LET'S WORK HARDER ON

1469
00:49:20,512 --> 00:49:22,581
THIS, OR HOW DO YOU MOBILIZE THE

1470
00:49:22,581 --> 00:49:23,916
TEAM TO REACT OR RESPOND TO

1471
00:49:23,916 --> 00:49:25,117
SOMETHING THAT IS NEWLY

1472
00:49:25,117 --> 00:49:26,652
DISCOVERED, OR NEWLY PUBLISHED

1473
00:49:26,652 --> 00:49:26,852
MAYBE?

1474
00:49:26,852 --> 00:49:31,056
>> IT'S A FANTASTIC
QUESTION.

1475
00:49:31,056 --> 00:49:32,458
SO FIRST, I DIDN'T SAY THIS BUT

1476
00:49:32,458 --> 00:49:34,026
MAYBE IT'S CLEAR THAT WE DO NOT

1477
00:49:34,026 --> 00:49:36,328
CARRY OUT RESEARCH INSIDE THE

1478
00:49:36,328 --> 00:49:40,933
NIH ON THE PROGRAM, BUT WE'VE

1479
00:49:40,933 --> 00:49:44,536
MADE THIS REPOSITORY OF DATA

1480
00:49:44,536 --> 00:49:45,871
PUBLICLY ACCESSIBLE.

1481
00:49:45,871 --> 00:49:46,805
I DIDN'T MENTION THIS BUT WE

1482
00:49:46,805 --> 00:49:50,175
HAVE NOW, AS OF THIS WEEK, CLOSE

1483
00:49:50,175 --> 00:49:51,910
TO 12,000 RESEARCHERS WORKING ON

1484
00:49:51,910 --> 00:49:53,345
THE DATA FROM NOT JUST THE

1485
00:49:53,345 --> 00:49:57,816
UNITED STATES BUT ACTUALLY IN

1486
00:49:57,816 --> 00:49:59,518
SIX CONTINENTS ACROSS THE GLOBE

1487
00:49:59,518 --> 00:50:00,853
NOWT WITH INTERNATIONAL ACCESS.

1488
00:50:00,853 --> 00:50:02,087
SO THE QUESTION IS, SINCE WE'RE

1489
00:50:02,087 --> 00:50:03,756
NOT THE ONES CARRYING OUT THE

1490
00:50:03,756 --> 00:50:04,790
RESEARCH, HOW DO HE WITH

1491
00:50:04,790 --> 00:50:10,663
MOBWE MOBILIZE THEINDIVIDUALS WR

1492
00:50:10,663 --> 00:50:11,897
COMMUNITY, AND THERE ARE A

1493
00:50:11,897 --> 00:50:13,232
NUMBER OF WAYS WE'VE DONE THIS

1494
00:50:13,232 --> 00:50:14,133
IN THE PAST.

1495
00:50:14,133 --> 00:50:16,502
NOT NECESSARILY ON THE

1496
00:50:16,502 --> 00:50:17,736
PUBLICATION THIS WEEK, BUT WE

1497
00:50:17,736 --> 00:50:20,739
HAVE A SCIENTIFIC ROAD MAP.

1498
00:50:20,739 --> 00:50:22,274
MY ROLE IN JOINING THE PROGRAM

1499
00:50:22,274 --> 00:50:24,243
AS CHIEF MEDICAL AND SCIENTIFIC

1500
00:50:24,243 --> 00:50:25,878
OFFICER WAS TO DEVISE A

1501
00:50:25,878 --> 00:50:27,780
SCIENTIFIC STRATEGY, AND WE'VE

1502
00:50:27,780 --> 00:50:29,682
BEEN LAUNCHING ELEMENTS OF THAT

1503
00:50:29,682 --> 00:50:33,052
STRATEGY PERIODICALLY THROUGH

1504
00:50:33,052 --> 00:50:34,486
OUR COMMUNICATIONS TO THE

1505
00:50:34,486 --> 00:50:35,621
RESEARCHER COMMUNITY AND WE HAVE

1506
00:50:35,621 --> 00:50:37,723
AN ACTIVE NEWSLETTER, WE HAVE A

1507
00:50:37,723 --> 00:50:38,957
WEBSITE, WE HAVE OTHER

1508
00:50:38,957 --> 00:50:40,459
STANDARDIZED WAYS OF

1509
00:50:40,459 --> 00:50:41,994
COMMUNICATING.

1510
00:50:41,994 --> 00:50:43,629
AS WELL AS WE WORK WITH OTHER

1511
00:50:43,629 --> 00:50:45,297
NIH INSTITUTES AND CENTERS AND

1512
00:50:45,297 --> 00:50:49,535
PUT ALL-OF-US LANGUAGE INTO

1513
00:50:49,535 --> 00:50:50,903
THEIR REQUEST FOR APPLICATION.

1514
00:50:50,903 --> 00:50:52,037
AND SOMETIMES IT'S VERY GENERAL,

1515
00:50:52,037 --> 00:50:53,439
LAKE WE HAVE A LARGE DATASET, IF

1516
00:50:53,439 --> 00:50:55,307
YOU'RE INTERESTED IN HEART

1517
00:50:55,307 --> 00:50:56,642
DISEASE AND YOU'RE APPLYING TO

1518
00:50:56,642 --> 00:51:00,079
AN NHLBI CALL, HOPEFULLY YOU'LL

1519
00:51:00,079 --> 00:51:03,449
USE THE ALL-OF-US DATA.

1520
00:51:03,449 --> 00:51:04,783
BUT IN SOME CASES LIKE THE ONE

1521
00:51:04,783 --> 00:51:05,984
YOU MENTIONED WHERE WE CAN

1522
00:51:05,984 --> 00:51:07,419
INSERT LANGUAGE THAT REALLY

1523
00:51:07,419 --> 00:51:09,722
SPECIFIES AN INTEREST IN CAN YOU

1524
00:51:09,722 --> 00:51:14,359
REPLICATE THIS, CAN YOU SHOW US

1525
00:51:14,359 --> 00:51:15,561
IN MORE THAN WHAT THIS

1526
00:51:15,561 --> 00:51:16,095
PARTICULAR PUBLICATION IS

1527
00:51:16,095 --> 00:51:16,595
SEEING.

1528
00:51:16,595 --> 00:51:18,230
I HAPPEN TO THINK THAT LOOKING

1529
00:51:18,230 --> 00:51:19,832
AT THE DATA FROM OUR -- OF WHAT

1530
00:51:19,832 --> 00:51:22,367
PEOPLE ARE DOING AT THE

1531
00:51:22,367 --> 00:51:23,535
WORKBENCH, OUR RESEARCH

1532
00:51:23,535 --> 00:51:25,137
COMMUNITY RAPIDLY RESPONDS ON

1533
00:51:25,137 --> 00:51:26,772
ITS OWN, DOESN'T TAKE A LOT TO

1534
00:51:26,772 --> 00:51:27,506
MOTIVATE THEM.

1535
00:51:27,506 --> 00:51:31,744
BUT WE CAN ALSO -- WE DO PUSHES

1536
00:51:31,744 --> 00:51:33,912
OF THE TYPE I MENTIONED TO

1537
00:51:33,912 --> 00:51:35,147
INSTIGATE RESEARCH AND CATALYZE

1538
00:51:35,147 --> 00:51:36,682
RESEARCH ALONG THE LINES OF

1539
00:51:36,682 --> 00:51:38,550
AREAS THAT WE REALLY WANT TO SEE

1540
00:51:38,550 --> 00:51:42,154
EXPANDED.

1541
00:51:42,154 --> 00:51:45,157
SO IT A PORTFOLIO OF STRATEGIES,

1542
00:51:45,157 --> 00:51:46,892
NOT JUST ONE, TO GET THAT DONE.

1543
00:51:46,892 --> 00:51:51,630
I WISH I COULD SAY THAT I CAN GO

1544
00:51:51,630 --> 00:51:54,166
OUT TOMORROW AND DO THE WORK

1545
00:51:54,166 --> 00:51:55,501
MYSELF, AND I CAN BUT THAT'S NOT

1546
00:51:55,501 --> 00:51:56,635
REALLY THE WAY THE PROGRAM IS

1547
00:51:56,635 --> 00:51:56,935
ORGANIZED.

1548
00:51:56,935 --> 00:51:58,604
WE WREELY WANT THE EXTERNAL

1549
00:51:58,604 --> 00:52:00,873
RESEARCH COMMUNITY AND THE

1550
00:52:00,873 --> 00:52:03,475
INTERNAL PROGRAMS AT NIH TO BE

1551
00:52:03,475 --> 00:52:04,643
ENERGIZED TO USE THE DATA TO DO

1552
00:52:04,643 --> 00:52:06,845
THE KINDS OF THINGS YOU JUST

1553
00:52:06,845 --> 00:52:07,146
SUGGESTED.

1554
00:52:07,146 --> 00:52:07,446
>> TERRIFIC.

1555
00:52:07,446 --> 00:52:11,984
THANK YOU.

1556
00:52:11,984 --> 00:52:14,653
>> THANK YOU FOR A VERY

1557
00:52:14,653 --> 00:52:15,320
INFORMATIVE PRESENTATION.

1558
00:52:15,320 --> 00:52:16,255
I HAVE A COUPLE OF QUESTIONS.

1559
00:52:16,255 --> 00:52:17,356
YOU'RE TRYING TO GET THE

1560
00:52:17,356 --> 00:52:18,757
CLINICAL CENTER TO PARTICIPATE

1561
00:52:18,757 --> 00:52:24,129
OR MAKE USE OF THE DATA THAT

1562
00:52:24,129 --> 00:52:25,063
YOU'RE COLLECTING IN YOUR

1563
00:52:25,063 --> 00:52:25,364
DATABASE.

1564
00:52:25,364 --> 00:52:26,665
WHAT ACTIVITIES OR WHAT ACTIONS

1565
00:52:26,665 --> 00:52:29,568
ARE UNDERWAY TO TRY AND GET

1566
00:52:29,568 --> 00:52:30,636
INVOLVED WITH THE EXISTING

1567
00:52:30,636 --> 00:52:32,204
CLINICAL RESEARCH DATA THAT'S

1568
00:52:32,204 --> 00:52:34,840
GENERATED SUCH AS THAT WHICH IS

1569
00:52:34,840 --> 00:52:41,914
GOING INTO BEATR BETRIS FROM THE

1570
00:52:41,914 --> 00:52:44,516
CLINICAL CENTER AREAS RESEARCH?

1571
00:52:44,516 --> 00:52:48,487
>> THERE HAVE BEEN
DISCUSSIONS

1572
00:52:48,487 --> 00:52:50,589
WITH THE SCIENTIFIC DIRECTORS

1573
00:52:50,589 --> 00:52:52,291
ABOUT THE ALL-OF-US RESEARCH

1574
00:52:52,291 --> 00:52:52,858
PROGRAM.

1575
00:52:52,858 --> 00:52:54,426
I THINK I'VE BEEN INVOLVED IN AT

1576
00:52:54,426 --> 00:52:56,195
LEAST TWO OF THOSE DISCUSSIONS.

1577
00:52:56,195 --> 00:52:58,497
BUT I CAN'T SAY THAT I'VE SEEN

1578
00:52:58,497 --> 00:53:01,733
THE ACTUAL -- THAT THE FOLLOW-UP

1579
00:53:01,733 --> 00:53:03,335
HAS BEEN WHAT I THINK YOU'RE

1580
00:53:03,335 --> 00:53:08,407
ALLUDING TO IS HOW DO WE MAKE IT

1581
00:53:08,407 --> 00:53:10,576
MORE INTEGRAL TO WHAT THE

1582
00:53:10,576 --> 00:53:11,577
CLINICAL CENTER HAS DONE.

1583
00:53:11,577 --> 00:53:13,111
I LOVE YOUR ADVICE ON HOW TO DO

1584
00:53:13,111 --> 00:53:13,779
THAT.

1585
00:53:13,779 --> 00:53:15,080
THERE'S DEFINITELY SOME SOCIAL

1586
00:53:15,080 --> 00:53:16,114
ENGINEERING THAT NEEDS TO HAPPEN

1587
00:53:16,114 --> 00:53:17,049
TO GET PEOPLE TO UNDERSTAND THE

1588
00:53:17,049 --> 00:53:18,083
OPPORTUNITY FOR THE DATA.

1589
00:53:18,083 --> 00:53:21,119
CERTAIN INVESTIGATORS LIKE THE

1590
00:53:21,119 --> 00:53:23,055
NHGRI GROUP I MENTIONED CLEARLY

1591
00:53:23,055 --> 00:53:24,389
HAVE BEEN CLEARLY MOTIVATED TO

1592
00:53:24,389 --> 00:53:25,357
DO SO.

1593
00:53:25,357 --> 00:53:30,128
WE ALSO HAVE SOME WORK WITH

1594
00:53:30,128 --> 00:53:31,530
NICHD AND THE CLINICAL CENTER TO

1595
00:53:31,530 --> 00:53:35,133
BEGIN TO BRING DISABILITY SURVEY

1596
00:53:35,133 --> 00:53:36,501
WORK INTO THE FOREFRONT OF OUR

1597
00:53:36,501 --> 00:53:37,803
PROGRAM THAT CAN BE USEFUL FOR

1598
00:53:37,803 --> 00:53:38,537
THE CLINICAL CENTER.

1599
00:53:38,537 --> 00:53:41,740
I THINK THE PEDIATRIC WORK THAT

1600
00:53:41,740 --> 00:53:44,376
I JUST MENTIONED WILL BE VERY

1601
00:53:44,376 --> 00:53:47,446
IMPORTANT, BUT I WOULD LOVE ANY

1602
00:53:47,446 --> 00:53:48,814
INSIGHTS FROM THE BOARD AS TO

1603
00:53:48,814 --> 00:53:50,115
WHAT WE MIGHT BE DOING

1604
00:53:50,115 --> 00:53:51,483
DIFFERENTLY.

1605
00:53:51,483 --> 00:53:54,386
>> SECONDLY, WHERE IS THE
DATA

1606
00:53:54,386 --> 00:53:58,023
STORED?

1607
00:53:58,023 --> 00:54:00,692
>> WE HAVE A DATA AND
RESEARCH

1608
00:54:00,692 --> 00:54:03,262
CENTER, A DRC, IT'S A FUNDED

1609
00:54:03,262 --> 00:54:03,962
AWARD.

1610
00:54:03,962 --> 00:54:08,600
THE AWARD IS TO THE BROAD

1611
00:54:08,600 --> 00:54:12,537
INSTITUTE, VANDERBILT AND

1612
00:54:12,537 --> 00:54:13,739
VERILY, PRIVATE COMPANY, PART OF

1613
00:54:13,739 --> 00:54:15,274
THE ALPHABET.

1614
00:54:15,274 --> 00:54:18,277
THE ACTUAL SERVERS ARE AT

1615
00:54:18,277 --> 00:54:19,378
VANDERBILT UNIVERSITY, WHERE THE

1616
00:54:19,378 --> 00:54:25,851
DATA IS STORED.

1617
00:54:25,851 --> 00:54:28,987
>> SO THEY'RE BASICALLY
OFF

1618
00:54:28,987 --> 00:54:29,888
CAMPUS DATA CENTERS?

1619
00:54:29,888 --> 00:54:30,455
>> YES.

1620
00:54:30,455 --> 00:54:35,060
AND IT'S ALL CLOUD-BASED, IT'S

1621
00:54:35,060 --> 00:54:36,762
ON GOOGLE CLOUD AND WE'RE

1622
00:54:36,762 --> 00:54:38,196
EXPANDING TO AWS IN THE COMING

1623
00:54:38,196 --> 00:54:41,700
YEAR.

1624
00:54:41,700 --> 00:54:42,534
>> THANK YOU.

1625
00:54:42,534 --> 00:54:43,769
>> DR. DEVASKAR.

1626
00:54:43,769 --> 00:54:45,537
>> SORRY, I HAVE A SECOND

1627
00:54:45,537 --> 00:54:45,804
QUESTION.

1628
00:54:45,804 --> 00:54:46,038
>> SURE.

1629
00:54:46,038 --> 00:54:47,839
>> DR. GINSBURG.

1630
00:54:47,839 --> 00:54:50,008
SO HOW DO YOU TREAT PREGNANCY OF

1631
00:54:50,008 --> 00:54:54,046
INDIVIDUALS IN YOUR RECRUITED

1632
00:54:54,046 --> 00:54:54,813
COHORT?

1633
00:54:54,813 --> 00:54:55,881
THAT'S ONE QUESTION.

1634
00:54:55,881 --> 00:54:58,517
AND THEN IF THERE IS A BIRTH,

1635
00:54:58,517 --> 00:55:00,786
HOW DO YOU TREAT THAT DIET IN

1636
00:55:00,786 --> 00:55:03,522
THE OFFSPRING?

1637
00:55:03,522 --> 00:55:08,493
>> WE CERTAINLY RECORD

1638
00:55:08,493 --> 00:55:10,295
PREGNANCIES AS PART OF OUR

1639
00:55:10,295 --> 00:55:11,430
SURVEY -- SOME OF THE SURVEY

1640
00:55:11,430 --> 00:55:17,336
INSTRUMENTS WE'VE LAUNCHED.

1641
00:55:17,336 --> 00:55:19,871
WE HAD A PROGRAM PRIOR TO MY

1642
00:55:19,871 --> 00:55:23,075
ARRIVAL, PREG-SOURCE I THINK T S

1643
00:55:23,075 --> 00:55:24,376
THE NAME OF IT THAT WE

1644
00:55:24,376 --> 00:55:24,843
PARTICIPATED IN.

1645
00:55:24,843 --> 00:55:26,378
WE ALSO CAPTURED PREGNANCY

1646
00:55:26,378 --> 00:55:31,950
INFORMATION FROM THE ELECTRONIC

1647
00:55:31,950 --> 00:55:32,284
HEALTH RECORD.

1648
00:55:32,284 --> 00:55:33,819
SO I'M SORRY I DON'T HAVE THE

1649
00:55:33,819 --> 00:55:34,853
NUMBERS IN FRONT OF ME BUT WE

1650
00:55:34,853 --> 00:55:37,055
HAVE SEVERAL, TENS OF THOUSANDS

1651
00:55:37,055 --> 00:55:38,023
OF INDIVIDUALS WHO EITHER ARE

1652
00:55:38,023 --> 00:55:40,092
CURRENTLY OR HAVE BEEN

1653
00:55:40,092 --> 00:55:40,525
PREVIOUSLY PREGNANT.

1654
00:55:40,525 --> 00:55:43,795
OF COURSE WE HAVE THE MAJORITY

1655
00:55:43,795 --> 00:55:49,134
OF OUR PARTICIPANTS ARE WOMEN.

1656
00:55:49,134 --> 00:55:50,435
SO I'M NOT SURE WHAT THE

1657
00:55:50,435 --> 00:55:51,403
MOTIVATION OF YOUR QUESTION IS

1658
00:55:51,403 --> 00:55:55,741
BUT WE CERTAINLY CAN BE LOOKING

1659
00:55:55,741 --> 00:55:58,076
AT MANY OF THE HEALTH ASPECTS OF

1660
00:55:58,076 --> 00:55:59,444
PREGNANCY, LIMITED BY WHAT'S IN

1661
00:55:59,444 --> 00:56:00,812
THE ELECTRONIC HEALTH RECORD

1662
00:56:00,812 --> 00:56:01,146
RIGHT NOW.

1663
00:56:01,146 --> 00:56:02,547
I DON'T THINK THAT WE HAVE A

1664
00:56:02,547 --> 00:56:06,618
TARGETED SURVEY RIGHT NOW AROUND

1665
00:56:06,618 --> 00:56:07,386
MATERNAL HEALTH AND PREGNANCY.

1666
00:56:07,386 --> 00:56:08,620
THAT'S GOING TO BE PART OF THE

1667
00:56:08,620 --> 00:56:09,388
PEDIATRIC PROTOCOL THAT I

1668
00:56:09,388 --> 00:56:11,723
MENTIONED EARLIER, SO MATERNAL

1669
00:56:11,723 --> 00:56:12,924
CHILD HEALTH IS AN IMPORTANT

1670
00:56:12,924 --> 00:56:14,493
PLANK IN THAT STRATEGIC

1671
00:56:14,493 --> 00:56:19,531
PLATFORM, AND THE BIRTHS ARE

1672
00:56:19,531 --> 00:56:20,632
RECORDED AGAIN AS INDICATED

1673
00:56:20,632 --> 00:56:21,900
EITHER THROUGH SURVEY

1674
00:56:21,900 --> 00:56:22,634
INSTRUMENTS, WE GET FAMILY

1675
00:56:22,634 --> 00:56:23,502
HISTORY INFORMATION.

1676
00:56:23,502 --> 00:56:25,303
WE'LL BE DOING RE-ASSESSMENTS

1677
00:56:25,303 --> 00:56:26,938
SOMETIME STARTING IN 2025, SO

1678
00:56:26,938 --> 00:56:27,906
BRINGING PEOPLE BACK, WE'LL

1679
00:56:27,906 --> 00:56:29,875
LEARN IF EVENTS HAPPENED IN

1680
00:56:29,875 --> 00:56:33,979
INDIVIDUALS' LIVES INCLUDING

1681
00:56:33,979 --> 00:56:35,747
FAMILY EVENTS THROUGH THAT

1682
00:56:35,747 --> 00:56:36,948
MECHANISM AND THE INITIAL

1683
00:56:36,948 --> 00:56:38,183
ENROLLMENT FOR OUR PEDIATRIC

1684
00:56:38,183 --> 00:56:41,153
PROTOCOL WILL BE FROM PARENTS

1685
00:56:41,153 --> 00:56:42,954
WHO ARE ALREADY IN THE PROGRAM,

1686
00:56:42,954 --> 00:56:44,322
EITHER ASCERTAINED WHILE THEY'RE

1687
00:56:44,322 --> 00:56:45,323
PREGNANT AND EVENTUALLY

1688
00:56:45,323 --> 00:56:47,125
ENROLLING THEIR CHILD AT BIRTH,

1689
00:56:47,125 --> 00:56:51,596
OR INDIVIDUALS WHO HAVE GIVEN

1690
00:56:51,596 --> 00:56:52,597
BIRTH, FAMILIES WHO HAVE HAD A

1691
00:56:52,597 --> 00:56:53,698
BIRTH IN THE LAST FEW YEARS WHO

1692
00:56:53,698 --> 00:56:55,867
WANT TO ENROLL THEIR CHILD, SO

1693
00:56:55,867 --> 00:56:59,137
WE'LL HAVE THOSE DYADS AND

1694
00:56:59,137 --> 00:57:01,406
HOPEFULLY EVEN TRIOS AS A

1695
00:57:01,406 --> 00:57:02,641
SIGNIFICANT PART OF THE DATASET.

1696
00:57:02,641 --> 00:57:05,243
>> THANK YOU.

1697
00:57:05,243 --> 00:57:06,578
>> FINAL QUESTION.

1698
00:57:06,578 --> 00:57:08,280
>> DR. GINSBURG, THAT WAS
A

1699
00:57:08,280 --> 00:57:09,047
FABULOUS PRESENTATION.

1700
00:57:09,047 --> 00:57:11,149
>> THANK YOU.

1701
00:57:11,149 --> 00:57:12,684
>> WONDERFUL WORK.

1702
00:57:12,684 --> 00:57:14,886
I'M SORRY TO HEAR YOU HAVE A 34%

1703
00:57:14,886 --> 00:57:15,854
REDUCTION IN YOUR BUDGET NEXT

1704
00:57:15,854 --> 00:57:16,688
YEAR.

1705
00:57:16,688 --> 00:57:18,457
BOY, NO GOOD DEED GOES

1706
00:57:18,457 --> 00:57:19,324
UNPUNISHED THERE.

1707
00:57:19,324 --> 00:57:19,758
HOLY SMOKE.

1708
00:57:19,758 --> 00:57:24,062
BUT I HAD A QUESTION ABOUT I'M

1709
00:57:24,062 --> 00:57:26,498
SURE IT'S ROBUST BUT YOU DID NOT

1710
00:57:26,498 --> 00:57:27,499
COMMENT, I'D BE CURIOUS ABOUT

1711
00:57:27,499 --> 00:57:28,567
IT, WHAT ARE THE SAFEGUARDS

1712
00:57:28,567 --> 00:57:29,768
AROUND THE DATA IN TERMS OF

1713
00:57:29,768 --> 00:57:31,269
PARTICULARLY WHEN IT'S BEEN

1714
00:57:31,269 --> 00:57:32,471
DISTRIBUTED WIDELY LIKE THIS?

1715
00:57:32,471 --> 00:57:33,672
BECAUSE IT'S VERY DETAILED,

1716
00:57:33,672 --> 00:57:34,940
SOUNDS LIKE THE DATABASE IS

1717
00:57:34,940 --> 00:57:35,640
EXTREMELY DETAILED.

1718
00:57:35,640 --> 00:57:36,675
>> YEAH.

1719
00:57:36,675 --> 00:57:38,543
GOOD QUESTION.

1720
00:57:38,543 --> 00:57:41,146
AND IN THE INTEREST OF TIME I

1721
00:57:41,146 --> 00:57:42,547
DIDN'T GO THROUGH A LOT OF

1722
00:57:42,547 --> 00:57:43,081
DETAILS.

1723
00:57:43,081 --> 00:57:48,153
BUT FIRST OF ALL, WE HAVE A VERY

1724
00:57:48,153 --> 00:57:59,331
AGGRESSIVE WAY TO ON FEW SKATE -

1725
00:58:01,967 --> 00:58:02,501
RESEARCHALLOFUS.ORG, WHERE

1726
00:58:02,501 --> 00:58:03,535
ANYBODY WITH A WEB BROWSER CAN

1727
00:58:03,535 --> 00:58:05,003
SEARCH ON THINGS LIKE WHAT'S --

1728
00:58:05,003 --> 00:58:06,171
HOW MANY PEOPLE DO WE HAVE WITH

1729
00:58:06,171 --> 00:58:08,406
A PARTICULAR EHR DIAGNOSIS CODE

1730
00:58:08,406 --> 00:58:12,210
OR LABORATORY VALUE OR EVEN THE

1731
00:58:12,210 --> 00:58:14,813
GENETIC VARIANTS CAN BE SEARCHED

1732
00:58:14,813 --> 00:58:15,914
ON FOR FREQUENCY AND ASSOCIATED

1733
00:58:15,914 --> 00:58:17,115
WITH VERY HIGH LEVEL

1734
00:58:17,115 --> 00:58:18,984
DEMOGRAPHICS LIKE MALE/FEMALE OR

1735
00:58:18,984 --> 00:58:22,120
AGE GROUPS.

1736
00:58:22,120 --> 00:58:25,824
ANY RESEARCHER NEEDS TO ASCRIBE

1737
00:58:25,824 --> 00:58:27,559
TO OUR CODES OF CONDUCT IN DOING

1738
00:58:27,559 --> 00:58:29,828
MORE THAN USING THE PUBLIC DATA

1739
00:58:29,828 --> 00:58:31,429
BROWSER SO WE HAVE A REGISTERED

1740
00:58:31,429 --> 00:58:32,964
TIER WHICH REQUIRES DATA USE AND

1741
00:58:32,964 --> 00:58:36,168
RESEARCH AGREEMENT WITH THE

1742
00:58:36,168 --> 00:58:37,569
INSTITUTION FROM WHICH THAT

1743
00:58:37,569 --> 00:58:38,403
INVESTIGATOR IS ASSOCIATED.

1744
00:58:38,403 --> 00:58:39,771
THERE ARE CODES OF CONDUCT AND

1745
00:58:39,771 --> 00:58:41,139
RULES OF THE ROAD THAT ARE

1746
00:58:41,139 --> 00:58:44,809
EXPLICIT AND COURSES THAT

1747
00:58:44,809 --> 00:58:45,677
INDIVIDUALS ARE REQUIRED TO TAKE

1748
00:58:45,677 --> 00:58:47,078
IN ORDER TO ENTER THE REGISTERED

1749
00:58:47,078 --> 00:58:48,813
TIER AND USE THE DATA.

1750
00:58:48,813 --> 00:58:50,515
THE REGISTERED TIER ALSO

1751
00:58:50,515 --> 00:58:52,984
CONTAINS SOME CONFUSED DATES AND

1752
00:58:52,984 --> 00:58:55,320
OTHER ATTRIBUTES THAT PREVENT

1753
00:58:55,320 --> 00:58:57,422
THE POSSIBILITY OF IDENTIFYING

1754
00:58:57,422 --> 00:58:58,723
AN INDIVIDUAL WHICH IS I THINK

1755
00:58:58,723 --> 00:59:01,660
THE ISSUE YOU'RE RAISING IS, THE

1756
00:59:01,660 --> 00:59:02,627
NEFARIOUS INTENT TO REALLY TRY

1757
00:59:02,627 --> 00:59:03,728
TO UNDERSTAND WHO AN INDIVIDUAL

1758
00:59:03,728 --> 00:59:04,829
IS IN OUR DATASET.

1759
00:59:04,829 --> 00:59:06,064
AND THEN WE HAVE SOMETHING

1760
00:59:06,064 --> 00:59:06,831
CALLED THE CONTROL TIER, WHICH

1761
00:59:06,831 --> 00:59:09,367
IS THE HIGHEST LEVEL OF ACCESS.

1762
00:59:09,367 --> 00:59:12,304
REQUIRES THE MOST AMOUNT OF

1763
00:59:12,304 --> 00:59:13,271
ADHERENCE TO CODES OF CONDUCT

1764
00:59:13,271 --> 00:59:14,306
AND SECURITY MEASURES, AND

1765
00:59:14,306 --> 00:59:16,107
THAT'S WHERE THE GENETIC DATA

1766
00:59:16,107 --> 00:59:19,377
RESIDES, THAT'S WHERE WE DEFINE

1767
00:59:19,377 --> 00:59:20,645
SPECIFICALLY SELF-REPORTED RACE

1768
00:59:20,645 --> 00:59:25,784
AND ETHNICITY AND OTHER DATA

1769
00:59:25,784 --> 00:59:26,585
ATTRIBUTES, AND WE HAVE PROGRAMS

1770
00:59:26,585 --> 00:59:29,421
THAT ARE CONSTANTLY SURVEILLING

1771
00:59:29,421 --> 00:59:32,357
THE DATA TO MAKE SURE THAT NO

1772
00:59:32,357 --> 00:59:34,359
ONE IS DOING ANYTHING NEFARIOUS

1773
00:59:34,359 --> 00:59:34,859
WITH IT.

1774
00:59:34,859 --> 00:59:38,697
AND WE'VE CLOSED DOWN WHAT WE

1775
00:59:38,697 --> 00:59:40,565
CALL WORKBENCH WORK SITES, WORK

1776
00:59:40,565 --> 00:59:44,236
SPACES ON THAT BASIS.

1777
00:59:44,236 --> 00:59:45,470
SO WE KNOW -- I THINK OUR

1778
00:59:45,470 --> 00:59:46,304
SECURITY MEASURES SO FAR HAVE

1779
00:59:46,304 --> 00:59:47,772
BEEN REALLY GOOD, WE HAVEN'T HAD

1780
00:59:47,772 --> 00:59:49,341
ANY HACKS THAT WE'RE AWARE OF,

1781
00:59:49,341 --> 00:59:50,542
AND EVEN THOUGH I'M SURE PEOPLE

1782
00:59:50,542 --> 00:59:51,843
ARE TRYING.

1783
00:59:51,843 --> 00:59:53,111
SO, SO FAR, SO GOOD.

1784
00:59:53,111 --> 00:59:58,149
AND WE OF COURSE MAKE SURE OUR

1785
00:59:58,149 --> 00:59:59,017
PARTICIPANTS KNOW THAT NOTHING

1786
00:59:59,017 --> 01:00:00,986
IS PERFECT BUT WE'RE STRIVING

1787
01:00:00,986 --> 01:00:02,354
FOR PERFECTION, AND I THINK THEY

1788
01:00:02,354 --> 01:00:03,588
FOR THE MOST PART ARE

1789
01:00:03,588 --> 01:00:06,691
TRUSTWORTHY, TRUSTING US TO

1790
01:00:06,691 --> 01:00:08,793
HANDLE THEIR DATA IN THE MOST

1791
01:00:08,793 --> 01:00:09,761
TRUSTWORTHY DAY, AND WE'RE VERY

1792
01:00:09,761 --> 01:00:10,695
TRANSPARENT WITH THE WAY THE

1793
01:00:10,695 --> 01:00:14,165
DATA IS BEING USED.

1794
01:00:14,165 --> 01:00:15,300
SO I HOPE THAT ANSWERS IN PART

1795
01:00:15,300 --> 01:00:15,767
YOUR QUESTION.

1796
01:00:15,767 --> 01:00:16,968
I'M HAPPY TO PROVIDE MORE

1797
01:00:16,968 --> 01:00:18,737
DETAILS ON THE SECURITY MEASURES

1798
01:00:18,737 --> 01:00:20,538
THAT WE HAVE, BULL THAT'S NOT MY

1799
01:00:20,538 --> 01:00:21,740
AREA, BUT I KNOW THAT THEY

1800
01:00:21,740 --> 01:00:22,507
EXIST.

1801
01:00:22,507 --> 01:00:24,476
>> IT'S NOT MY AREA
EITHER, BUT

1802
01:00:24,476 --> 01:00:26,177
I WAS JUST WEARING THE HAT THAT

1803
01:00:26,177 --> 01:00:27,912
WE'RE SUPPOSED TO REVIEW QUALITY

1804
01:00:27,912 --> 01:00:29,347
AND SAFETY AND THAT ALWAYS COMES

1805
01:00:29,347 --> 01:00:30,448
UP AS A MAJOR ISSUE.

1806
01:00:30,448 --> 01:00:31,249
>> ABSOLUTELY.

1807
01:00:31,249 --> 01:00:33,551
>> MY SECOND QUESTION IS,
A

1808
01:00:33,551 --> 01:00:35,287
MILLION RECORDS IS A TERRIFIC

1809
01:00:35,287 --> 01:00:35,787
NUMBER.

1810
01:00:35,787 --> 01:00:37,389
STEPHANIE WOULD KNOW BETTER THAN

1811
01:00:37,389 --> 01:00:38,757
I, BUT MY UNDERSTANDING OF THE

1812
01:00:38,757 --> 01:00:40,725
USE OF THESE DATABASES, IT GETS

1813
01:00:40,725 --> 01:00:42,260
MORE POWERFUL EXPONENTIALLY AS

1814
01:00:42,260 --> 01:00:43,361
YOU INCREASE THE NUMBER OF

1815
01:00:43,361 --> 01:00:45,630
PEOPLE IN THEM, RECORDS IN THEM.

1816
01:00:45,630 --> 01:00:49,701
SO ARE THERE EFFORTS TO LINK THE

1817
01:00:49,701 --> 01:00:51,636
NIH, THIS ALL-OF-US DATABASE

1818
01:00:51,636 --> 01:00:53,204
WITH DATABASES BEING CREATED BY

1819
01:00:53,204 --> 01:00:54,639
OTHER AK DEMINK MEDICAL CENTERS?

1820
01:00:54,639 --> 01:00:56,708
I KNOW ALL THE ACADEMIC MEDICAL

1821
01:00:56,708 --> 01:00:58,009
CENTERS ARE CREATING THE THEIR

1822
01:00:58,009 --> 01:00:59,511
OWN VERY DETAILED DATABASES JUST

1823
01:00:59,511 --> 01:01:02,814
LIKE THIS.

1824
01:01:02,814 --> 01:01:05,483
>> IT A GREAT QUESTION AND
IT'S

1825
01:01:05,483 --> 01:01:05,950
A GREAT VISION.

1826
01:01:05,950 --> 01:01:07,686
SO RIGHT NOW, THERE'S NO FORMAL

1827
01:01:07,686 --> 01:01:09,888
LINKAGES OF THE TYPE THAT YOU'RE

1828
01:01:09,888 --> 01:01:12,223
TALKING ABOUT, BUT WE'VE BEEN

1829
01:01:12,223 --> 01:01:14,759
ABLE TO CREATE SOME TRUSTED

1830
01:01:14,759 --> 01:01:16,628
RESEARCH ENVIRONMENTS BETWEEN

1831
01:01:16,628 --> 01:01:18,863
TWO DATASETS, SO UK BIOBANK AND

1832
01:01:18,863 --> 01:01:19,864
ALL-OF-US HAVE WORKED TOGETHER

1833
01:01:19,864 --> 01:01:21,933
ON CROSS VALIDATION OF RESULTS

1834
01:01:21,933 --> 01:01:22,967
DISCOVERED IN ONE AND VALIDATED

1835
01:01:22,967 --> 01:01:24,736
IN THE OTHER AND VICE VERSA.

1836
01:01:24,736 --> 01:01:28,907
WE'RE ALSO WORKING WITH ANVILE,

1837
01:01:28,907 --> 01:01:31,309
WHICH IS ONE OF THE LARGE

1838
01:01:31,309 --> 01:01:35,413
DATASETS THAT NHGRI HAS BEEN

1839
01:01:35,413 --> 01:01:36,114
DEVELOPING, AND WE'RE WORKING

1840
01:01:36,114 --> 01:01:40,585
ALSO WITH THE NHLBI TOP MED

1841
01:01:40,585 --> 01:01:45,223
CONSORTIUM BUT NOT FORMAL

1842
01:01:45,223 --> 01:01:46,691
LINKAGES OF THE TYPE AWR TUBING

1843
01:01:46,691 --> 01:01:47,726
ABOUT, BUT EVENTUALLY OUR VISION

1844
01:01:47,726 --> 01:01:49,427
IS TO HAVE RESEARCHERS WITH A

1845
01:01:49,427 --> 01:01:52,197
LOCAL DATABASE THEY HAVE BEEN

1846
01:01:52,197 --> 01:01:53,598
ACQUIRING ON THEIR OWN TO PUT

1847
01:01:53,598 --> 01:01:55,867
THAT EITHER IN PROXIMITY TO OUR

1848
01:01:55,867 --> 01:01:57,602
DATASET ON THE WORKBENCH AND TO

1849
01:01:57,602 --> 01:01:58,870
REALLY HAVE A WORK SPACE THAT

1850
01:01:58,870 --> 01:02:00,438
ALLOWS THEM TO PRIVATELY HAVE

1851
01:02:00,438 --> 01:02:02,173
THEIR DATA BUT LOOK ACROSS

1852
01:02:02,173 --> 01:02:03,908
BETWEEN THEIR DATA AND OUR DATA.

1853
01:02:03,908 --> 01:02:05,477
AND MAYBE WE'LL END UP WITH

1854
01:02:05,477 --> 01:02:06,778
SOMETHING THAT'S MORE

1855
01:02:06,778 --> 01:02:09,681
HOMOGENEOUS OVER TIME, BUT I

1856
01:02:09,681 --> 01:02:10,448
FULLY AGREE WITH THE VISION THAT

1857
01:02:10,448 --> 01:02:11,883
THE MORE DATA WE HAVE, THE MORE

1858
01:02:11,883 --> 01:02:13,184
LIKELY IT IS THAT WE'LL

1859
01:02:13,184 --> 01:02:13,918
ACCELERATE INSIGHTS FROM THE

1860
01:02:13,918 --> 01:02:17,555
DATA.

1861
01:02:17,555 --> 01:02:21,593
>> MISS ROYSTER, ONE MORE.

1862
01:02:21,593 --> 01:02:23,328
>> GOOD MORNING, DR.
GINSBURG.

1863
01:02:23,328 --> 01:02:24,496
THANK YOU FOR THIS GREAT

1864
01:02:24,496 --> 01:02:29,534
PRESENTATION.

1865
01:02:29,534 --> 01:02:31,603
SINCE 2022, I'VE BEEN

1866
01:02:31,603 --> 01:02:33,138
PARTICIPATING IN THE ALL-OF-US

1867
01:02:33,138 --> 01:02:39,310
STUDY THROUGH THE UPMC NETWORK.

1868
01:02:39,310 --> 01:02:40,845
I LIVE IN WESTERN MARYLAND, VERY

1869
01:02:40,845 --> 01:02:46,251
RURAL AREA, AND IT IS KIND OF

1870
01:02:46,251 --> 01:02:50,688
TOUGH TO GET PEOPLE, RURAL FOLKS

1871
01:02:50,688 --> 01:02:52,724
AS WELL AS AFRICAN AMERICAN

1872
01:02:52,724 --> 01:02:54,192
FOLKS, TO PARTICIPATE IN

1873
01:02:54,192 --> 01:02:55,927
STUDIES, AND I REALLY APPRECIATE

1874
01:02:55,927 --> 01:02:59,397
YOUR PUTTING THIS TOGETHER,

1875
01:02:59,397 --> 01:03:01,166
WHICH REALLY DIVERSIFIES THE

1876
01:03:01,166 --> 01:03:02,133
RESEARCH AND MAKES IT A LITTLE

1877
01:03:02,133 --> 01:03:04,135
MORE EASIER TO LOOK -- AND KIND

1878
01:03:04,135 --> 01:03:05,737
OF BREAK DOWN THE BARRIERS SO

1879
01:03:05,737 --> 01:03:06,838
THAT FOLKS ARE ABLE TO

1880
01:03:06,838 --> 01:03:11,943
PARTICIPATE.

1881
01:03:11,943 --> 01:03:13,278
ONE OF THE REASONS I REALLY

1882
01:03:13,278 --> 01:03:15,647
WANTED TO PARTICIPATE IS THE

1883
01:03:15,647 --> 01:03:21,186
BUZZ WORD DNA.

1884
01:03:21,186 --> 01:03:22,120
BECAUSE I'M REALLY PARTICULAR

1885
01:03:22,120 --> 01:03:27,292
ABOUT WHO KNOWS WHAT REGARDING

1886
01:03:27,292 --> 01:03:33,231
MY DNA, AND ALTHOUGH I'M THE

1887
01:03:33,231 --> 01:03:38,636
PERSON THAT SIGNED ME UP DID SAY

1888
01:03:38,636 --> 01:03:39,504
THAT IT IS A POSSIBLE THAT

1889
01:03:39,504 --> 01:03:41,372
THINGS CAN GET HACKED, AND I

1890
01:03:41,372 --> 01:03:43,341
REALLY APPRECIATE ALSO THE TYPES

1891
01:03:43,341 --> 01:03:46,611
OF QUESTIONS, THE SURVEYS THAT U

1892
01:03:46,611 --> 01:03:53,251
ALL HAVE FOR THIS STUDY BECAUSE

1893
01:03:53,251 --> 01:03:54,152
ALTHOUGH I THINK I KNOW

1894
01:03:54,152 --> 01:03:55,286
EVERYTHING ABOUT ME AND MY

1895
01:03:55,286 --> 01:03:59,891
FAMILY, I DON'T, AND IT REALLY

1896
01:03:59,891 --> 01:04:02,193
OPENED UP THE REAL GOOD

1897
01:04:02,193 --> 01:04:03,294
QUESTIONS REGARDING HEALTH AND

1898
01:04:03,294 --> 01:04:04,362
EVERYTHING WHEN IT COMES TO ME.

1899
01:04:04,362 --> 01:04:07,866
THANK YOU.

1900
01:04:07,866 --> 01:04:10,068
>> THANK YOU, ACTUALLY.

1901
01:04:10,068 --> 01:04:11,035
FIRST OF ALL, THANK YOU FOR

1902
01:04:11,035 --> 01:04:13,304
SHARING THAT YOU'RE A

1903
01:04:13,304 --> 01:04:14,072
PARTICIPANT.

1904
01:04:14,072 --> 01:04:15,373
I HESITATED TO ASK AT THE

1905
01:04:15,373 --> 01:04:16,908
BEGINNING WHETHER ANYBODY IN THE

1906
01:04:16,908 --> 01:04:18,243
ROOM WAS A PARTICIPANT IN THE

1907
01:04:18,243 --> 01:04:19,511
PROGRAM.

1908
01:04:19,511 --> 01:04:24,315
I APPRECIATE WHAT YOU SAID ABOUT

1909
01:04:24,315 --> 01:04:26,284
THE ACCESS OF THE PROGRAM TO

1910
01:04:26,284 --> 01:04:28,386
INDIVIDUALS IN RURAL

1911
01:04:28,386 --> 01:04:32,090
COMMUNITIES, AND FROM OTHER

1912
01:04:32,090 --> 01:04:32,857
UNDERREPRESENTED GROUPS.

1913
01:04:32,857 --> 01:04:35,793
WE DO HAVE A VAN THAT -- WE HAVE

1914
01:04:35,793 --> 01:04:36,761
FOUR VANS THAT GO AROUND THE

1915
01:04:36,761 --> 01:04:39,898
COUNTRY ALL THE TIME TRYING TO

1916
01:04:39,898 --> 01:04:41,099
ENROLL PEOPLE WHERE THEY ARE,

1917
01:04:41,099 --> 01:04:42,166
GOING TO RURAL COMMUNITIES,

1918
01:04:42,166 --> 01:04:43,701
MAKING SURE THAT PEOPLE THAT

1919
01:04:43,701 --> 01:04:46,771
OTHERWISE CAN'T TRAVEL HAVE

1920
01:04:46,771 --> 01:04:48,940
ACCESS TO THE PROGRAM AND ITS

1921
01:04:48,940 --> 01:04:49,173
DATA.

1922
01:04:49,173 --> 01:04:52,010
AND AGAIN, THANK YOU FOR BEING

1923
01:04:52,010 --> 01:04:54,412
ENTHUSIASTIC ABOUT THE KINDS OF

1924
01:04:54,412 --> 01:04:55,813
INFORMATION WE'RE ASKING YOU TO

1925
01:04:55,813 --> 01:04:57,549
PROVIDE AND TRUSTING US WITH

1926
01:04:57,549 --> 01:04:59,117
YOUR GENETIC DATA AND ALLOWING

1927
01:04:59,117 --> 01:05:02,220
THE RESEARCHER COMMUNITY TO GAIN

1928
01:05:02,220 --> 01:05:03,221
THE KINDS OF INSIGHTS THAT WE'RE

1929
01:05:03,221 --> 01:05:05,089
JUST BEGINNING TO DO BECAUSE OF

1930
01:05:05,089 --> 01:05:07,926
PEOPLE LIKE YOU.

1931
01:05:07,926 --> 01:05:08,993
SO -- AND BECAUSE OF YOU.

1932
01:05:08,993 --> 01:05:12,297
SO THANK YOU VERY MUCH FOR THAT.

1933
01:05:12,297 --> 01:05:13,665
>> I'VE BEEN TRYING TO GET
OTHER

1934
01:05:13,665 --> 01:05:14,799
FOLKS TO SIGN UP.

1935
01:05:14,799 --> 01:05:16,334
I DID FINALLY GET MY FRIEND

1936
01:05:16,334 --> 01:05:17,302
LARRY TO SIGN UP.

1937
01:05:17,302 --> 01:05:20,838
I EVEN POSTED THE ALL-OF-US

1938
01:05:20,838 --> 01:05:22,106
INFORMATION ON FACEBOOK.

1939
01:05:22,106 --> 01:05:25,343
SO TRYING TO GET -- BUT WHEN I

1940
01:05:25,343 --> 01:05:28,646
HAD SIGNED UP IN LIKE 2022, I

1941
01:05:28,646 --> 01:05:30,081
THINK IT WAS LIKE AT THE HALF

1942
01:05:30,081 --> 01:05:31,916
MARK, LIKE THE 500,000 MARK, I

1943
01:05:31,916 --> 01:05:35,453
WAS TOLD, SO IT'S GOOD THAT YOU

1944
01:05:35,453 --> 01:05:36,788
ALL HAVE INCREASED SINCE THEN.

1945
01:05:36,788 --> 01:05:37,889
>> THANK YOU.

1946
01:05:37,889 --> 01:05:39,724
THANK YOU -- WELL, 500,000 WAS A

1947
01:05:39,724 --> 01:05:40,358
GREAT MILESTONE.

1948
01:05:40,358 --> 01:05:42,660
WE'RE LOOKING FORWARD TO A

1949
01:05:42,660 --> 01:05:44,128
MILLION.

1950
01:05:44,128 --> 01:05:45,697
AND IT'S ONLY BECAUSE OF

1951
01:05:45,697 --> 01:05:48,099
PEOPLE -- BECAUSE OF YOU AND

1952
01:05:48,099 --> 01:05:49,300
OTHER PARTICIPANTS THAT WE CAN

1953
01:05:49,300 --> 01:05:49,968
DO THIS.

1954
01:05:49,968 --> 01:05:52,270
SO AGAIN, MY PROFOUND

1955
01:05:52,270 --> 01:05:53,104
APPRECIATION FOR YOUR

1956
01:05:53,104 --> 01:05:56,007
PARTICIPATION.

1957
01:05:56,007 --> 01:05:58,009
>> THANK YOU SO MUCH,

1958
01:05:58,009 --> 01:05:58,343
DR. GINSBURG.

1959
01:05:58,343 --> 01:06:00,211
YOU COULD TELL FROM ALL OF THE

1960
01:06:00,211 --> 01:06:02,614
QUESTIONS THE LEVEL OF

1961
01:06:02,614 --> 01:06:05,383
ENTHUSIASM OF THIS GROUP, AND IT

1962
01:06:05,383 --> 01:06:08,086
IS CERTAINLY NOT LOST ON THIS

1963
01:06:08,086 --> 01:06:10,855
GROUP THAT IT'S LONG OVERDUAL

1964
01:06:10,855 --> 01:06:14,826
THAT WEOVERDUETHAT WE REACH OUTS

1965
01:06:14,826 --> 01:06:16,361
THAT HAVE NOT HISTORICALLY BEEN

1966
01:06:16,361 --> 01:06:17,695
REPRESENTED IN STUDIES LIKE

1967
01:06:17,695 --> 01:06:18,096
THIS.

1968
01:06:18,096 --> 01:06:20,098
I MEAN, TO ME, THE OTHER

1969
01:06:20,098 --> 01:06:23,768
REMARKABLE THING IS WE SO OFTEN

1970
01:06:23,768 --> 01:06:26,771
LOOK AT SOMEONE WHO HAS AN

1971
01:06:26,771 --> 01:06:29,273
UNUSUAL PHENOTYPE, UNUSUAL

1972
01:06:29,273 --> 01:06:32,744
APPEARANCE, UNUSUAL FUNCTION,

1973
01:06:32,744 --> 01:06:34,178
AND THEN ASK WHAT THE GENOTYPE

1974
01:06:34,178 --> 01:06:34,445
IS.

1975
01:06:34,445 --> 01:06:35,780
THE FACT THAT THIS STUDY WILL

1976
01:06:35,780 --> 01:06:39,283
ENABLE US TO LOOK AT PEOPLE WITH

1977
01:06:39,283 --> 01:06:42,086
UNUSUAL GENOTYPES AND SAY, THIS

1978
01:06:42,086 --> 01:06:44,822
PERSON LOOKS NORMAL, WHY IS

1979
01:06:44,822 --> 01:06:48,226
THAT, OR WHAT DID WE MISS IN

1980
01:06:48,226 --> 01:06:49,193
THIS PHENOTYPE?

1981
01:06:49,193 --> 01:06:51,763
SO AGAIN, THANK YOU SO MUCH FROM

1982
01:06:51,763 --> 01:06:53,097
ALL OF US.

1983
01:06:53,097 --> 01:06:55,633
>> THANK YOU AGAIN FOR
HAVING

1984
01:06:55,633 --> 01:06:59,303
ME, AND THE DOOR FROM ME IS

1985
01:06:59,303 --> 01:07:00,405
COMPLETELY OPEN FOR YOUR INPUT

1986
01:07:00,405 --> 01:07:02,573
ANY TIME AND I'M HAPPY TO COME

1987
01:07:02,573 --> 01:07:03,775
BACK AT SOME FUTURE TIME IF

1988
01:07:03,775 --> 01:07:04,842
THAT'S DESIRED, SO APPRECIATE

1989
01:07:04,842 --> 01:07:05,510
YOU HAVING ME TODAY.

1990
01:07:05,510 --> 01:07:05,943
>> GREAT.

1991
01:07:05,943 --> 01:07:07,278
THANK YOU VERY MUCH, AND SAFE

1992
01:07:07,278 --> 01:07:08,713
TRAVELS.

1993
01:07:08,713 --> 01:07:11,382
>> THANK YOU.

1994
01:07:11,382 --> 01:07:12,050
>> OKAY.

1995
01:07:12,050 --> 01:07:17,522
SO NEXT, I WILL ACTUALLY GIVE

1996
01:07:17,522 --> 01:07:21,459
THE UPDATE THAT IS ON BEHALF OF

1997
01:07:21,459 --> 01:07:26,564
OUR DIRECTOR, DR. BERTAGNOLLI,

1998
01:07:26,564 --> 01:07:28,132
AND AS WAS ANNOUNCED AT THE LAST

1999
01:07:28,132 --> 01:07:29,867
MEETING, I'LL BE DOING THIS

2000
01:07:29,867 --> 01:07:34,305
REGULARLY AT THIS POINT.

2001
01:07:34,305 --> 01:07:36,274
SO IF I COULD HAVE THE NEXT

2002
01:07:36,274 --> 01:07:37,275
SLIDE, THIS IS A LITTLE BIT OF A

2003
01:07:37,275 --> 01:07:42,046
TABLE OF CONTENTS.

2004
01:07:42,046 --> 01:07:43,614
I THOUGHT WHAT I WOULD DO IS

2005
01:07:43,614 --> 01:07:45,750
TELL YOU A LITTLE BIT ABOUT

2006
01:07:45,750 --> 01:07:47,385
COMINGS AND GOINGS ABOUT PEOPLE

2007
01:07:47,385 --> 01:07:49,020
HERE AT NIH, SOME NEW

2008
01:07:49,020 --> 01:07:52,390
INITIATIVES THAT WE'VE PUT IN

2009
01:07:52,390 --> 01:07:53,958
PLACE, AND THEN MANY, MANY

2010
01:07:53,958 --> 01:07:57,962
AWARDS, AND THIS IS NOT A

2011
01:07:57,962 --> 01:07:58,696
TOTALLY COMPLETE LIST, I'M SURE.

2012
01:07:58,696 --> 01:08:03,768
SO THE NEXT SLIDE WILL GIVE YOU

2013
01:08:03,768 --> 01:08:07,405
A ACCEPTS OF W SENSE OF NEXT TOE

2014
01:08:07,405 --> 01:08:07,939
NEXT SLIDE.

2015
01:08:07,939 --> 01:08:09,507
SO WE'RE VERY, VERY HAPPY TO

2016
01:08:09,507 --> 01:08:11,008
ANNOUNCE THAT WE HAVE A NEW

2017
01:08:11,008 --> 01:08:12,443
DIRECTOR OF THE FOGARTY

2018
01:08:12,443 --> 01:08:14,645
INTERNATIONAL CENTER.

2019
01:08:14,645 --> 01:08:16,681
KATHLEEN NEUZIL IS FROM THE

2020
01:08:16,681 --> 01:08:18,950
UNIVERSITY OF MARYLAND.

2021
01:08:18,950 --> 01:08:21,352
SHE'S JOINING US, HAVING BEEN

2022
01:08:21,352 --> 01:08:23,554
FOR MANY, MANY YEARS A

2023
01:08:23,554 --> 01:08:29,127
CONSULTANT TO THE CDC, TO THE

2024
01:08:29,127 --> 01:08:29,794
WHO.

2025
01:08:29,794 --> 01:08:31,062
SHE IS REALLY A GLOBAL HEALTH

2026
01:08:31,062 --> 01:08:32,130
EXPERT, AND WE ARE DELIGHTED

2027
01:08:32,130 --> 01:08:34,665
THAT SHE IS HAS CHOSEN TO JOIN

2028
01:08:34,665 --> 01:08:41,639
US.

2029
01:08:41,639 --> 01:08:42,640
DR. JOSHUA GORDON JUST A COUPLE

2030
01:08:42,640 --> 01:08:48,346
OF WEEKS AGO LEFT NIH AFTER

2031
01:08:48,346 --> 01:08:50,414
ALMOST 10 YEARS AS THE DIRECTOR

2032
01:08:50,414 --> 01:08:54,652
OF NIMH, THE MENTAL HEALTH

2033
01:08:54,652 --> 01:08:56,154
INSTITUTE.

2034
01:08:56,154 --> 01:09:01,092
IN THE MIDDLE OF AUGUST, HE WILL

2035
01:09:01,092 --> 01:09:02,560
BECOME THE CHAIR OF THE

2036
01:09:02,560 --> 01:09:04,929
DEPARTMENT OF PSYCHIATRY AT

2037
01:09:04,929 --> 01:09:07,832
COLUMBIA UNIVERSITY, SO WE WISH

2038
01:09:07,832 --> 01:09:09,066
JOSH WELL AND THANK HIM VERY

2039
01:09:09,066 --> 01:09:18,075
MUCH FOR HIS SERVICE.

2040
01:09:18,075 --> 01:09:25,883
HIS DEPUTY DIRECTOR, SHELLI

2041
01:09:25,883 --> 01:09:28,686
AVENEVOLI IS GOING TO BE THE

2042
01:09:28,686 --> 01:09:30,121
ACTING NIMH DIRECTOR AND A

2043
01:09:30,121 --> 01:09:31,722
NATIONAL SEARCH IS ABOUT TO

2044
01:09:31,722 --> 01:09:32,690
BEGIN VERY SHORTLY.

2045
01:09:32,690 --> 01:09:35,126
SO AGAIN, WE'RE GRATEFUL TO

2046
01:09:35,126 --> 01:09:42,834
DR. AFT AVENEVOLI FOR TAKING T 

2047
01:09:42,834 --> 01:09:46,137
ON.

2048
01:09:46,137 --> 01:09:48,673
DEBORAH CITRIN HAS BEEN NAMED

2049
01:09:48,673 --> 01:09:49,974
THE SCIENTIFIC DIRECTOR FOR

2050
01:09:49,974 --> 01:09:54,579
CLINICAL RESEARCH AT THE

2051
01:09:54,579 --> 01:09:58,249
NATIONAL CANCER INSTITUTE

2052
01:09:58,249 --> 01:10:00,685
CLINICAL CENTER RESEARCH.

2053
01:10:00,685 --> 01:10:03,988
SHE'S VERY INVOLVED IN RADIATION

2054
01:10:03,988 --> 01:10:05,122
THERAPY AND LOOKING AT THE

2055
01:10:05,122 --> 01:10:07,959
EFFECTS OF RADIATION, THE

2056
01:10:07,959 --> 01:10:09,827
OFF-TARGET EFFECTS OF RADIATION

2057
01:10:09,827 --> 01:10:16,667
IN PATIENTS WITH CANCER.

2058
01:10:16,667 --> 01:10:19,737
HEATHER PATISAUL HAS BEEN

2059
01:10:19,737 --> 01:10:20,638
APPOINTED SCIENTIFIC DIRECTOR OF

2060
01:10:20,638 --> 01:10:24,208
THE DIVISION OF TRANSLATIONAL

2061
01:10:24,208 --> 01:10:25,309
TOXICOLOGY AT OUR ENVIRONMENTAL

2062
01:10:25,309 --> 01:10:30,982
HEALTH SCIENCES INSTITUTE.

2063
01:10:30,982 --> 01:10:33,718
THIS IS A WONDERFUL EXAMPLE, AND

2064
01:10:33,718 --> 01:10:36,654
THERE ARE SEVERAL OF THESE.

2065
01:10:36,654 --> 01:10:38,723
DR. PATISAUL WAS A MEMBER OF THE

2066
01:10:38,723 --> 01:10:41,325
NIEHS BOARD OF SCIENTIFIC

2067
01:10:41,325 --> 01:10:43,628
COUNSELORS AND REALLY GAVE

2068
01:10:43,628 --> 01:10:45,496
ADVICE TO THE SCIENTIFIC

2069
01:10:45,496 --> 01:10:48,366
DIRECTOR OF THE NIEHS, AND WAS

2070
01:10:48,366 --> 01:10:51,068
SO IMPRESSED WITH WHAT SHE SAW

2071
01:10:51,068 --> 01:10:52,904
AND THE OPPORTUNITIES HERE AT

2072
01:10:52,904 --> 01:10:54,739
NIH THAT SHE DECIDED TO JOIN US

2073
01:10:54,739 --> 01:11:00,311
AS A MEMBER OF OUR FACULTY.

2074
01:11:00,311 --> 01:11:01,913
SO SHE COMES TO US FROM OUTSIDE,

2075
01:11:01,913 --> 01:11:06,684
BUT REALLY WAS A MEMBER OF THE

2076
01:11:06,684 --> 01:11:09,720
FAMILY AT NIEHS, SO WE'RE

2077
01:11:09,720 --> 01:11:11,289
DELIGHTED THAT SHE'S CHOSEN TO

2078
01:11:11,289 --> 01:11:12,123
JOIN US.

2079
01:11:12,123 --> 01:11:19,297
THE NEXT SLIDE, DR. GEORG AUE

2080
01:11:19,297 --> 01:11:21,332
HAS BECOME THE ACTING CLINICAL

2081
01:11:21,332 --> 01:11:23,634
DIRECTOR OF NHLBI, ANOTHER

2082
01:11:23,634 --> 01:11:25,836
WONDERFUL STORY.

2083
01:11:25,836 --> 01:11:28,506
DR. RICHARD CHILDS WAS THE

2084
01:11:28,506 --> 01:11:31,709
CLINICAL DIRECTOR AT NHLBI.

2085
01:11:31,709 --> 01:11:34,478
HE JUST RECENTLY ACCEPTED THE

2086
01:11:34,478 --> 01:11:39,250
POSITION OF SCIENTIFIC DIRECTOR,

2087
01:11:39,250 --> 01:11:40,451
LEAVING THE CLINICAL DIRECTOR

2088
01:11:40,451 --> 01:11:46,424
POSITION VACANT, BUT THERE WAS

2089
01:11:46,424 --> 01:11:49,393
DR. GEORG AUE WAS THE DEPUTY

2090
01:11:49,393 --> 01:11:50,828
CLINICAL DIRECTOR, AND HAS NOW

2091
01:11:50,828 --> 01:11:55,866
STEPPED INTO THAT POSITION WHILE

2092
01:11:55,866 --> 01:11:57,601
A SEARCH IS BEING DONE.

2093
01:11:57,601 --> 01:12:04,041
SO REALLY AN EXAMPLE OF WHY

2094
01:12:04,041 --> 01:12:05,042
MAKING OPPORTUNITIES FOR PEOPLE

2095
01:12:05,042 --> 01:12:11,515
TO ASSUME LEADERSHIP POSITIONS

2096
01:12:11,515 --> 01:12:14,151
AS A DEPUTY REALLY SERVES IN THE

2097
01:12:14,151 --> 01:12:15,953
REALM OF SUCCESSION PLANNING AS

2098
01:12:15,953 --> 01:12:18,789
WELL AND GIVES CONTINUITY TO OUR

2099
01:12:18,789 --> 01:12:20,925
PROGRAMS WHILE WE'RE RECRUITING

2100
01:12:20,925 --> 01:12:26,731
THE NEXT GENERATION OF LEADERS.

2101
01:12:26,731 --> 01:12:28,199
SO THE NEXT SLIDE, I'M GOING TO

2102
01:12:28,199 --> 01:12:29,166
TELL YOU A LITTLE BIT ABOUT SOME

2103
01:12:29,166 --> 01:12:31,669
NEW INITIATIVES, AND THESE

2104
01:12:31,669 --> 01:12:35,706
REALLY ARE INITIATIVES THAT WHEN

2105
01:12:35,706 --> 01:12:37,641
I SAY I SPEAK ON BEHALF OF

2106
01:12:37,641 --> 01:12:38,676
DR. BERTAGNOLLI, THESE ARE

2107
01:12:38,676 --> 01:12:45,516
REALLY HER SIGNATURE

2108
01:12:45,516 --> 01:12:46,083
INITIATIVES.

2109
01:12:46,083 --> 01:12:47,685
THE NEXT SLIDE CONTAINS A LOT OF

2110
01:12:47,685 --> 01:12:49,120
PEOPLE WHO DON'T NEED ANY

2111
01:12:49,120 --> 01:12:50,221
INTRODUCTION TO ANY AUDIENCE IN

2112
01:12:50,221 --> 01:12:53,858
THIS COUNTRY.

2113
01:12:53,858 --> 01:12:54,792
SO PRESIDENT BIDEN JUST

2114
01:12:54,792 --> 01:12:55,760
RECENTLY, I'M QUITE CERTAIN,

2115
01:12:55,760 --> 01:12:57,762
WITH THE URGING OF HIS WIFE

2116
01:12:57,762 --> 01:13:02,867
DR. JILL BIDEN, HAS LAUNCHED THE

2117
01:13:02,867 --> 01:13:04,068
WOMEN'S HEALTH RESEARCH

2118
01:13:04,068 --> 01:13:04,502
INITIATIVE.

2119
01:13:04,502 --> 01:13:06,704
IT WILL COME AS NO SURPRISE TO

2120
01:13:06,704 --> 01:13:10,641
THIS AUDIENCE THAT REALLY FOR

2121
01:13:10,641 --> 01:13:14,111
DECADES, THE WAY DISEASES

2122
01:13:14,111 --> 01:13:22,219
PRESENT IN WOMEN HAVE BEEN

2123
01:13:22,219 --> 01:13:23,554
THOUGHT OF AS ATYPICAL

2124
01:13:23,554 --> 01:13:24,422
PRESENTATIONS WHEN, IN FACT,

2125
01:13:24,422 --> 01:13:25,756
THEY ARE THE TYPICAL

2126
01:13:25,756 --> 01:13:29,026
PRESENTATION FOR PEOPLE WHO

2127
01:13:29,026 --> 01:13:30,961
HAPPEN TO BE WOMEN.

2128
01:13:30,961 --> 01:13:33,497
AND SO THE NOTION IS TO REALLY

2129
01:13:33,497 --> 01:13:36,767
STUDY AS AN ENTITY THE WAY

2130
01:13:36,767 --> 01:13:37,868
DISEASES PRESENT AND THE WAY

2131
01:13:37,868 --> 01:13:41,439
DISEASES NEED TO BE TREATED IN

2132
01:13:41,439 --> 01:13:44,308
WOMEN, AND THE PRESIDENT HAS

2133
01:13:44,308 --> 01:13:47,812
ASKED THAT NIH BE AT THE

2134
01:13:47,812 --> 01:13:49,113
FOREFRONT OF THIS EFFORT AND I

2135
01:13:49,113 --> 01:13:53,184
KNOW FOR A FACT THAT -- AND JIM

2136
01:13:53,184 --> 01:13:54,251
AND I HAVE TALKED ABOUT THIS,

2137
01:13:54,251 --> 01:13:55,453
THAT THE CLINICAL CENTER WILL

2138
01:13:55,453 --> 01:13:58,889
PLAY A MAJOR, MAJOR ROLE IN

2139
01:13:58,889 --> 01:13:59,256
THIS.

2140
01:13:59,256 --> 01:14:02,193
ON THE RIGHT, YOU CAN SEE

2141
01:14:02,193 --> 01:14:05,830
DR. BERTAGNOLLI AND DR. JANINE

2142
01:14:05,830 --> 01:14:06,664
CLAYTON, WHO HEADS OUR OFFICE

2143
01:14:06,664 --> 01:14:09,867
FOR RESEARCH IN WOMEN'S HEALTH.

2144
01:14:09,867 --> 01:14:14,972
THE NEXT SLIDE IS A PICTURE FROM

2145
01:14:14,972 --> 01:14:16,807
A MEETING THAT JUST RECENTLY

2146
01:14:16,807 --> 01:14:19,643
TOOK PLACE, AND AS IS OUR WANT

2147
01:14:19,643 --> 01:14:21,178
THESE DAYS, WE HAD PEOPLE IN THE

2148
01:14:21,178 --> 01:14:25,216
ROOM AND PEOPLE ON ZOOM, AND

2149
01:14:25,216 --> 01:14:29,587
THIS IS AN INITIATIVE THAT WE

2150
01:14:29,587 --> 01:14:31,422
HOPE WILL DEMOCRATIZE THE

2151
01:14:31,422 --> 01:14:34,158
ABILITY OF INSTITUTIONS AROUND

2152
01:14:34,158 --> 01:14:37,661
THE COUNTRY TO PERFORM GENE

2153
01:14:37,661 --> 01:14:39,830
THERAPY TRIALS.

2154
01:14:39,830 --> 01:14:42,133
RIGHT NOW MOST OF THE GENE

2155
01:14:42,133 --> 01:14:43,334
THERAPY TRIALS BEING DONE IN

2156
01:14:43,334 --> 01:14:46,737
THIS COUNTRY ARE BEING DONE IN

2157
01:14:46,737 --> 01:14:50,441
VERY, VERY LARGE ACADEMIC

2158
01:14:50,441 --> 01:14:52,810
INSTITUTIONS AND PATIENTS WHO

2159
01:14:52,810 --> 01:14:54,078
ARE OFTEN -- BECAUSE THESE ARE

2160
01:14:54,078 --> 01:14:57,848
RARE AND ULTRA-RARE DISEASES,

2161
01:14:57,848 --> 01:14:58,949
HOSPITALS ALL AROUND THE WORLD

2162
01:14:58,949 --> 01:15:02,052
MAY HAVE ONE OR TWO FAMILIES

2163
01:15:02,052 --> 01:15:03,521
THAT HAVE THESE DISORDERS AND

2164
01:15:03,521 --> 01:15:06,524
EVERYBODY HAS TO TRAVEL, USUALLY

2165
01:15:06,524 --> 01:15:09,460
TO THE EAST COAST OR THE WEST

2166
01:15:09,460 --> 01:15:11,595
COAST TO GET THE STUDIES DONE.

2167
01:15:11,595 --> 01:15:15,432
THE WHOLE IDEA IS FOR THE NIH TO

2168
01:15:15,432 --> 01:15:18,068
SERVE AS A RESOURCE, AS A SORT

2169
01:15:18,068 --> 01:15:22,006
OF A NATIONAL CORE FACILITY TO

2170
01:15:22,006 --> 01:15:23,874
BE ABLE TO PROVIDE THE

2171
01:15:23,874 --> 01:15:26,710
WHEREWITHAL TO CENTERS AROUND

2172
01:15:26,710 --> 01:15:29,680
THE COUNTRY TO ENABLE THEM TO

2173
01:15:29,680 --> 01:15:34,785
PROVIDE CARE FOR THESE PATIENTS

2174
01:15:34,785 --> 01:15:35,753
MUCH CLOSER TO HOME.

2175
01:15:35,753 --> 01:15:41,659
AND THIS MEETING REALLY WAS AN

2176
01:15:41,659 --> 01:15:43,394
INTERAGENCY MEETING WITH NIH,

2177
01:15:43,394 --> 01:15:45,963
THE FOOD AND DRUG ADMINISTR 

2178
01:15:45,963 --> 01:15:46,964
ADMINISTRATION, AND THE CENTER

2179
01:15:46,964 --> 01:15:49,233
FOR MEDICARE MEDICAID SERVICES

2180
01:15:49,233 --> 01:15:50,768
PARTICIPATING.

2181
01:15:50,768 --> 01:15:54,905
AND SO REALLY THE LAUNCH OF A

2182
01:15:54,905 --> 01:15:56,840
VERY BROAD NATIONAL EFFORT TO

2183
01:15:56,840 --> 01:15:58,909
MAKE GENE THERAPY AVAILABLE.

2184
01:15:58,909 --> 01:15:59,076
 TO

2185
01:15:59,076 --> 01:16:02,313
PEOPLE.

2186
01:16:02,313 --> 01:16:05,816
ON THE NEXT SLIDE IS AGAIN A

2187
01:16:05,816 --> 01:16:11,388
SIGNATURE PROGRAM THAT DR

2188
01:16:11,388 --> 01:16:12,389
DR. BERTAGNOLLI IS INVESTING IN.

2189
01:16:12,389 --> 01:16:15,459
AND THIS IS ALMOST AT THE OTHER

2190
01:16:15,459 --> 01:16:17,595
END OF THE SPECTRUM FROM THE

2191
01:16:17,595 --> 01:16:20,898
RARE DISEASE INITIATIVE.

2192
01:16:20,898 --> 01:16:25,502
THIS IS AN EFFORT TO BRING

2193
01:16:25,502 --> 01:16:28,105
PRIMARY CARE PRACTICES AROUND

2194
01:16:28,105 --> 01:16:34,011
THE COUNTRY TO ENABLE THEM TO

2195
01:16:34,011 --> 01:16:37,715
CONTRIBUTE DATA FROM THEIR

2196
01:16:37,715 --> 01:16:41,785
ELECTRONIC MEDICAL RECORDS SO

2197
01:16:41,785 --> 01:16:45,389
THAT ISSUES OF HEALTH, COMMON

2198
01:16:45,389 --> 01:16:46,357
DISORDERS THAT AFFECT PEOPLE ALL

2199
01:16:46,357 --> 01:16:47,758
AROUND THE COUNTRY IN VERY, VERY

2200
01:16:47,758 --> 01:16:53,230
LARGE NUMBERS, CAN BE LOOKED AT

2201
01:16:53,230 --> 01:16:55,299
IN A SYSTEMATIC WAY, AND SO THAT

2202
01:16:55,299 --> 01:16:57,034
THE DATA MANAGING AND DATA

2203
01:16:57,034 --> 01:17:00,671
MINING RESOURCES OF THE NIH CAN

2204
01:17:00,671 --> 01:17:02,640
BE BROUGHT TO BEAR ON THE

2205
01:17:02,640 --> 01:17:05,342
INFORMATION THAT IS ALREADY

2206
01:17:05,342 --> 01:17:08,012
BEING COLLECTED IN PRIMARY CARE

2207
01:17:08,012 --> 01:17:10,481
PRACTICES AROUND THE COUNTRY,

2208
01:17:10,481 --> 01:17:13,450
AND TO PROVIDE THESE PRACTICES

2209
01:17:13,450 --> 01:17:18,055
WOULD STANDARDIZE DATA GATHERING

2210
01:17:18,055 --> 01:17:21,759
SETS TO PROVIDE THESE PRIMARY

2211
01:17:21,759 --> 01:17:25,396
CARE PRACTICES WITH THE ABILITY

2212
01:17:25,396 --> 01:17:28,966
TO PARTICIPATE IN A NATIONAL

2213
01:17:28,966 --> 01:17:29,333
RESEARCH EFFORT.

2214
01:17:29,333 --> 01:17:33,537
AND THAT LITERALLY JUST LAUNCHED

2215
01:17:33,537 --> 01:17:36,707
A COUPLE OF WEEKS AGO.

2216
01:17:36,707 --> 01:17:38,709
THE NEXT SLIDE WILL INTRODUCE

2217
01:17:38,709 --> 01:17:41,011
THE FINAL SECTION OF THIS

2218
01:17:41,011 --> 01:17:44,381
UPDATE, AND THAT IS THE MANY,

2219
01:17:44,381 --> 01:17:47,017
MANY AWARDS THAT OUR FACULTY

2220
01:17:47,017 --> 01:17:51,121
HAVE TBAR NER GARNERED SINCE WET

2221
01:17:51,121 --> 01:17:51,622
AS A BOARD.

2222
01:17:51,622 --> 01:17:53,424
SO THE NEXT SLIDE JUST SHOWS YOU

2223
01:17:53,424 --> 01:17:55,125
FIVE INDIVIDUALS WHO HAVE BEEN

2224
01:17:55,125 --> 01:17:56,560
ELECTED TO THE NATIONAL ACADEMY

2225
01:17:56,560 --> 01:17:59,897
OF SCIENCES.

2226
01:17:59,897 --> 01:18:03,200
DR. KONKEL IS FROM NIEHS AND

2227
01:18:03,200 --> 01:18:05,302
WORKS ON THE EFFECT OF

2228
01:18:05,302 --> 01:18:10,007
ENVIRONMENTAL TOXINS ON DNA

2229
01:18:10,007 --> 01:18:13,610
REPLICATION.

2230
01:18:13,610 --> 01:18:16,447
DR. KWON-CHUNG IS FROM NIAID AND

2231
01:18:16,447 --> 01:18:19,416
WORKS ON DISORDERS CAUSED BY

2232
01:18:19,416 --> 01:18:21,385
FUNGAL INFECTION AND THE

2233
01:18:21,385 --> 01:18:23,987
MOLECULAR UNDERPINNINGS OF THOSE

2234
01:18:23,987 --> 01:18:27,925
DISORDERS.

2235
01:18:27,925 --> 01:18:28,959
DR. STEVEN ROSENBERG IS NO

2236
01:18:28,959 --> 01:18:30,794
STRANGER TO THIS GROUP, AND HE

2237
01:18:30,794 --> 01:18:35,933
AND DR. GIORGIO TRINCHERI AND

2238
01:18:35,933 --> 01:18:38,902
DR. SANDRA WOLIN ARE ALL FROM

2239
01:18:38,902 --> 01:18:39,970
NCI, THE NATIONAL CANCER

2240
01:18:39,970 --> 01:18:41,872
INSTITUTE.

2241
01:18:41,872 --> 01:18:44,408
DR. ROSENBERG AND DR. TRINCHERI,

2242
01:18:44,408 --> 01:18:45,976
OF COURSE, WORK ON

2243
01:18:45,976 --> 01:18:48,612
IMMUNOTHERAPIES FOR CANCER, AND

2244
01:18:48,612 --> 01:18:51,115
ABNORMALITIES OF THE IMMUNE

2245
01:18:51,115 --> 01:18:55,386
SYSTEM THAT PREDISPOSE TO CAN 

2246
01:18:55,386 --> 01:18:55,619
CANCER.

2247
01:18:55,619 --> 01:18:57,654
AND DR. WOLIN IS ONE OF THE

2248
01:18:57,654 --> 01:18:59,423
WORLD EXPERTS ON THE RNA

2249
01:18:59,423 --> 01:19:00,924
BIOLOGY.

2250
01:19:00,924 --> 01:19:03,026
RNA IS A MOLECULE -- I'M A

2251
01:19:03,026 --> 01:19:04,528
BIOCHEMIST BY BACKGROUND, AND

2252
01:19:04,528 --> 01:19:08,098
RNA IS A MOLECULE THAT WHEN I

2253
01:19:08,098 --> 01:19:11,735
WAS IN SCHOOL, WAS JUST THE

2254
01:19:11,735 --> 01:19:13,270
MIDDLEMAN BETWEEN DNA AND THE

2255
01:19:13,270 --> 01:19:13,604
PROTEINS.

2256
01:19:13,604 --> 01:19:15,773
IT WAS JUST THERE TO TRANSLATE

2257
01:19:15,773 --> 01:19:21,979
WHAT WAS IN THE NUCLEUS TO BEING

2258
01:19:21,979 --> 01:19:23,747
USED IN THE CYTOPLASM, AND NOW

2259
01:19:23,747 --> 01:19:25,516
WE KNOW THAT RNA HAS ABOUT A

2260
01:19:25,516 --> 01:19:27,785
HUNDRED OTHER FUNCTIONS THAT WE

2261
01:19:27,785 --> 01:19:30,421
HAD NO IDEA EXISTED PERHAPS 10

2262
01:19:30,421 --> 01:19:33,190
YEARS AGO, AND A LOT OF THAT IS

2263
01:19:33,190 --> 01:19:35,492
BECAUSE OF DR. WOLIN.

2264
01:19:35,492 --> 01:19:41,732
THE NEXT SLIDE SHOWS YOU SOME OF

2265
01:19:41,732 --> 01:19:47,538
OUR ADMINISTRATIVE PERSONNEL WHO

2266
01:19:47,538 --> 01:19:48,939
HAVE WON PRESIDENTIAL RANK

2267
01:19:48,939 --> 01:19:53,710
AWARDS FROM HHS.

2268
01:19:53,710 --> 01:19:58,081
KEITH LAMIRANDE IS FROM NCATS,

2269
01:19:58,081 --> 01:20:00,717
COLLEEN MCGOWAN IS FROM THE

2270
01:20:00,717 --> 01:20:02,886
OFFICE OF RESEARCH SERVICES,

2271
01:20:02,886 --> 01:20:06,924
CAMILLE HOOVER FROM NIDDK, AND

2272
01:20:06,924 --> 01:20:09,359
JERRY SHEEHAN FROM THE NATIONAL

2273
01:20:09,359 --> 01:20:09,893
LIBRARY OF MEDICINE.

2274
01:20:09,893 --> 01:20:14,264
AND THIS REALLY IS THE PREMIERE

2275
01:20:14,264 --> 01:20:21,605
AWARD FROM THE DEPARTMENT TO A

2276
01:20:21,605 --> 01:20:28,512
CAREER GOVERNMENT STAFF MEMBER.

2277
01:20:28,512 --> 01:20:29,680
THE NEXT SLIDE, AGAIN, NO

2278
01:20:29,680 --> 01:20:32,883
STRANGER TO THIS GROUP,

2279
01:20:32,883 --> 01:20:34,251
DR. LINEHAN WORKS IN THE

2280
01:20:34,251 --> 01:20:37,387
CLINICAL CENTER AND IS A

2281
01:20:37,387 --> 01:20:39,790
SURGEON, UROLOGIC SURGEON WHO

2282
01:20:39,790 --> 01:20:42,993
WORKS ON CANCER IN THE UROLOGIC

2283
01:20:42,993 --> 01:20:44,161
SYSTEM.

2284
01:20:44,161 --> 01:20:48,098
HE WON THE SECRETARY'S AWARD FOR

2285
01:20:48,098 --> 01:20:50,934
DISTINGUISHED SERVICE FROM HHS.

2286
01:20:50,934 --> 01:20:57,941
THE NEXT SLIDE IS DR. ANDRE

2287
01:20:57,941 --> 01:20:59,576
NUSSENZWEIG, WHO WON A CAREER

2288
01:20:59,576 --> 01:21:00,477
ACHIEVEMENT AWARD.

2289
01:21:00,477 --> 01:21:03,747
HE WORKS ON DNA DAMAGE AND ITS

2290
01:21:03,747 --> 01:21:09,286
ROLE IN CANCER PREDISPOSITION.

2291
01:21:09,286 --> 01:21:11,154
AND THE FINAL SLIDE, AGAIN, IS

2292
01:21:11,154 --> 01:21:13,991
SOMEONE VERY FAMILIAR TO THIS

2293
01:21:13,991 --> 01:21:19,496
GROUP, DR. BRIGITTE WIDEMANN WHO

2294
01:21:19,496 --> 01:21:21,198
WON THE SECRETARY'S AWARD FOR

2295
01:21:21,198 --> 01:21:24,701
MERITORIOUS SERVICE, AND

2296
01:21:24,701 --> 01:21:26,136
DR. WIDEMANN HEADS THE PEDIATRIC

2297
01:21:26,136 --> 01:21:27,237
ONCOLOGY GROUP HERE AT THE

2298
01:21:27,237 --> 01:21:31,074
CLINICAL CENTER AND WORKS ON

2299
01:21:31,074 --> 01:21:33,710
NEUROFIBROMATOSIS, REALLY A

2300
01:21:33,710 --> 01:21:35,212
PREDISPOSITION SYNDROME TO

2301
01:21:35,212 --> 01:21:37,047
CANCER OF THE NERVOUS SYSTEM.

2302
01:21:37,047 --> 01:21:39,917
SO I THANK YOU FOR GIVING ME THE

2303
01:21:39,917 --> 01:21:43,620
OPPORTUNITY TO PRESENT AN

2304
01:21:43,620 --> 01:21:47,491
UPDATE, AND REALLY, REALLY PROUD

2305
01:21:47,491 --> 01:21:48,992
OF EVERYTHING THAT HAS HAPPENED

2306
01:21:48,992 --> 01:21:54,364
JUST SINCE OUR LAST MEETING.

2307
01:21:54,364 --> 01:21:55,799
SO NOW IT'S MY PLEASURE TO TURN

2308
01:21:55,799 --> 01:21:58,602
THE PODIUM OVER TO DR. GILMAN

2309
01:21:58,602 --> 01:22:00,070
AGAIN, WHO'S GOING TO GIVE US

2310
01:22:00,070 --> 01:22:03,006
THE CEO'S REPORT.

2311
01:22:03,006 --> 01:22:04,975
>> THANKS, NINA.

2312
01:22:04,975 --> 01:22:07,144
I THINK I'LL DO THIS ONE FROM

2313
01:22:07,144 --> 01:22:10,981
HERE.

2314
01:22:10,981 --> 01:22:12,783
SO WE CAN GO AHEAD AND GO TO THE

2315
01:22:12,783 --> 01:22:13,283
NEXT SLIDE.

2316
01:22:13,283 --> 01:22:14,618
SO THE FIRST SLIDE, WE ALWAYS

2317
01:22:14,618 --> 01:22:18,655
START OFF WITH BRAGGING, AND

2318
01:22:18,655 --> 01:22:21,592
ANTOINETTE ROYSTER, ARE WHO IS A

2319
01:22:21,592 --> 01:22:23,126
MEMBER OF THE CLINICAL CENTER

2320
01:22:23,126 --> 01:22:24,227
RESEARCH HOSPITAL BOARD, HAS

2321
01:22:24,227 --> 01:22:25,929
BEEN A PATIENT AT THE CLINICAL

2322
01:22:25,929 --> 01:22:28,932
CENTER FOR A QUARTER OF A

2323
01:22:28,932 --> 01:22:31,635
CENTURY, AND ANTOINETTE IS A

2324
01:22:31,635 --> 01:22:33,637
FREQUENT VISITOR TO THE CLINICAL

2325
01:22:33,637 --> 01:22:35,439
CENTER AND OFTEN STOPS IN TO LET

2326
01:22:35,439 --> 01:22:38,442
US KNOW HOW WE'RE DOING, AND

2327
01:22:38,442 --> 01:22:40,510
DROP OFF A COOKIE OR SOME CANDY

2328
01:22:40,510 --> 01:22:41,812
OR SOMETHING.

2329
01:22:41,812 --> 01:22:43,180
WE APPRECIATE THE OPPORTUNITY TO

2330
01:22:43,180 --> 01:22:49,586
TAKE CARE OF HER.

2331
01:22:49,586 --> 01:22:52,356
THIS IS DR. NICOLE FARMER.

2332
01:22:52,356 --> 01:22:57,260
ABOUT A YEAR AGO, I THINK,

2333
01:22:57,260 --> 01:22:58,895
DR. WOLIN CAME AND OUTLINED THE

2334
01:22:58,895 --> 01:23:00,197
RESEARCH PROGRAM FOR THE

2335
01:23:00,197 --> 01:23:01,498
TRANSLATIONAL AND BIOBEHAVIORAL

2336
01:23:01,498 --> 01:23:03,300
AND HEALTH DISPARITIES BRANCH AT

2337
01:23:03,300 --> 01:23:05,936
THE NIH, AND DR. WOLIN OF COURSE

2338
01:23:05,936 --> 01:23:07,537
WAS THE CHIEF NURSING OFFICER

2339
01:23:07,537 --> 01:23:09,706
AND THEN A FEW YEARS AGO WENT

2340
01:23:09,706 --> 01:23:12,776
BACK THOUGH RESEARCH, HER FIRST

2341
01:23:12,776 --> 01:23:15,512
LOVE, AND SHE PRESENTED THE

2342
01:23:15,512 --> 01:23:18,915
RESEARCH PROGRAM FOR THE

2343
01:23:18,915 --> 01:23:19,683
TRANSLATIONAL BIOBEHAVIORAL AND

2344
01:23:19,683 --> 01:23:22,285
HEALTH DISPARITIES BRANCH OF THE

2345
01:23:22,285 --> 01:23:23,820
NIH CLINICAL CENTER RESEARCH

2346
01:23:23,820 --> 01:23:25,355
PROGRAM.

2347
01:23:25,355 --> 01:23:26,490
AGAIN, I THINK IT WAS ABOUT A

2348
01:23:26,490 --> 01:23:29,993
YEAR AGO, AND DR. FARMER HAS

2349
01:23:29,993 --> 01:23:32,362
BEEN A YOUNG INVESTIGATOR IN

2350
01:23:32,362 --> 01:23:34,331
THAT BRANCH FOR A WHILE WHO HAS

2351
01:23:34,331 --> 01:23:36,066
BEEN DEVELOPING HER OWN

2352
01:23:36,066 --> 01:23:40,437
INDEPENDENT RESEARCH PROGRAM.

2353
01:23:40,437 --> 01:23:43,940
AND RECENTLY, BECAME THE SECOND

2354
01:23:43,940 --> 01:23:47,911
NIH INVESTIGATOR TO BE ADMITTED

2355
01:23:47,911 --> 01:23:50,313
INTO THE NIH DISTINGUISHED

2356
01:23:50,313 --> 01:23:55,686
SCHOLARS PROGRAM.

2357
01:23:55,686 --> 01:23:58,522
THE TENURE TRACK INVESTIGATOR IN

2358
01:23:58,522 --> 01:23:59,856
DR. GRADY'S BIOETHICS DEPARTMENT

2359
01:23:59,856 --> 01:24:04,294
WAS THE FIRST AND THIS IS NOT

2360
01:24:04,294 --> 01:24:06,096
ONLY A DISTINGUISHED HONOR, BUT

2361
01:24:06,096 --> 01:24:10,000
IT PROVIDES SIGNIFICANT

2362
01:24:10,000 --> 01:24:12,936
RESOURCES TO THESE INVESTIGATORS

2363
01:24:12,936 --> 01:24:16,673
TO RAPIDLY GROW AND EXPAND THEIR

2364
01:24:16,673 --> 01:24:18,108
RESEARCH EFFORTS.

2365
01:24:18,108 --> 01:24:22,379
AND AS SUCH, IT CREATES A LITTLE

2366
01:24:22,379 --> 01:24:23,847
WIGGLE ROOM IN THE NIH CLINICAL

2367
01:24:23,847 --> 01:24:25,682
CENTER RESEARCH BUDGET.

2368
01:24:25,682 --> 01:24:27,651
SO THIS IS A REALLY GOOD THING

2369
01:24:27,651 --> 01:24:29,920
FOR ALL KINDS OF REASONS, AND

2370
01:24:29,920 --> 01:24:33,123
WE'RE VERY PROUD OF OUR TWO

2371
01:24:33,123 --> 01:24:38,962
DISTINGUISHED SCHOLARS.

2372
01:24:38,962 --> 01:24:41,031
WE RECENTLY RECEIVED, JUST LAST

2373
01:24:41,031 --> 01:24:42,432
WEEK OR EARLIER THIS WEEK

2374
01:24:42,432 --> 01:24:45,402
ACTUALLY, IT WAS MONDAY, THE

2375
01:24:45,402 --> 01:24:47,671
HEALTH AND HUMAN SERVICES FISCAL

2376
01:24:47,671 --> 01:24:49,973
YEAR 2023 GREEN CHAMPION AWARD

2377
01:24:49,973 --> 01:24:52,609
FOR THE SMALL GROUP, THIS IS OUR

2378
01:24:52,609 --> 01:24:53,677
STERILE PROCESSING SECTION OF

2379
01:24:53,677 --> 01:24:54,778
THE CLINICAL CENTER NURSING

2380
01:24:54,778 --> 01:24:56,580
DEPARTMENT.

2381
01:24:56,580 --> 01:25:05,021
IT'S LED ABLY BY BIBI AVILA, THE

2382
01:25:05,021 --> 01:25:06,590
FIRST NAME ON THE LIST, AND THEY

2383
01:25:06,590 --> 01:25:08,024
WERE RECOGNIZED FOR

2384
01:25:08,024 --> 01:25:09,025
SIGNIFICANTLY REDUCING THE

2385
01:25:09,025 --> 01:25:10,894
ENVIRONMENTAL IMPACT OF

2386
01:25:10,894 --> 01:25:11,528
STERILIZATION PACKAGE FOR

2387
01:25:11,528 --> 01:25:12,496
SURGICAL DEVICES IN THE

2388
01:25:12,496 --> 01:25:15,365
OPERATING ROOM.

2389
01:25:15,365 --> 01:25:16,900
AND IT NOT ONLY REDUCED WASTE,

2390
01:25:16,900 --> 01:25:19,302
BUT IT REDUCED THE CARBON

2391
01:25:19,302 --> 01:25:21,471
FOOTPRINT AND REDUCED BUDGET

2392
01:25:21,471 --> 01:25:24,241
COSTS AND RESULTED IN LESS WORK

2393
01:25:24,241 --> 01:25:25,742
AS WELL.

2394
01:25:25,742 --> 01:25:29,713
BIBI DOES A GREAT JOB OF THIS,

2395
01:25:29,713 --> 01:25:31,915
AND THIS WAS RECOGNIZED NOT ONLY

2396
01:25:31,915 --> 01:25:34,518
BY THIS AWARD, BUT ALSO DURING

2397
01:25:34,518 --> 01:25:35,919
THE JOINT COMMISSION SURVEY THAT

2398
01:25:35,919 --> 01:25:37,020
YOU'LL HEAR ABOUT IN A LITTLE

2399
01:25:37,020 --> 01:25:41,958
BIT.

2400
01:25:41,958 --> 01:25:45,662
LAST FRIDAY, WE HAD THE FIRST OF

2401
01:25:45,662 --> 01:25:47,130
ITS KIND EVENT.

2402
01:25:47,130 --> 01:25:49,933
SO WHEN I ARRIVED TO THE NIH

2403
01:25:49,933 --> 01:25:51,034
CLINICAL CENTER OVER SEVEN YEARS

2404
01:25:51,034 --> 01:25:56,740
AGO, I ASKED WHETHER WE HAD A

2405
01:25:56,740 --> 01:25:57,808
GRADUATION CEREMONY FOR ALL OF

2406
01:25:57,808 --> 01:25:59,142
OUR CLINICAL FELLOWS AND WHAT I

2407
01:25:59,142 --> 01:26:00,343
WAS TOLD BY THE CHIEF OF OUR

2408
01:26:00,343 --> 01:26:01,711
TRAINING AND MEDICAL EDUCATION

2409
01:26:01,711 --> 01:26:05,248
GROUP AT THE TIME WAS THAT THE

2410
01:26:05,248 --> 01:26:06,550
INDIVIDUAL PROGRAMS ALL DID

2411
01:26:06,550 --> 01:26:09,186
THEIR OWN THING, AND THERE

2412
01:26:09,186 --> 01:26:12,923
REALLY WASN'T A LOT OF DESIERL

2413
01:26:12,923 --> 01:26:16,626
TO HAVE THIS COMBINED PROGRAM.

2414
01:26:16,626 --> 01:26:20,130
WELL, JOYCE CHUNG, THE EXECUTIVE

2415
01:26:20,130 --> 01:26:21,598
DIRECTOR FOR GRADUATE MEDICAL

2416
01:26:21,598 --> 01:26:23,733
EDUCATION AND THE DESIGNATED

2417
01:26:23,733 --> 01:26:28,138
INSTITUTIONAL OFFICIAL FOR ALL

2418
01:26:28,138 --> 01:26:30,340
ACGME SPONSORED PROGRAMS AND WHO

2419
01:26:30,340 --> 01:26:31,708
OVERSEES ALL THE PROGRAMS, NOT

2420
01:26:31,708 --> 01:26:34,177
JUST THE ACGME ACCREDITED

2421
01:26:34,177 --> 01:26:35,345
PROGRAMS, SAID WE'RE GOING TO DO

2422
01:26:35,345 --> 01:26:35,912
THIS.

2423
01:26:35,912 --> 01:26:37,647
LAST YEAR IT WAS JUST KIND OF --

2424
01:26:37,647 --> 01:26:39,549
THERE WAS KIND OF, I THINK, A

2425
01:26:39,549 --> 01:26:40,717
PICNIC IN THE PARK KIND OF

2426
01:26:40,717 --> 01:26:42,319
EVENT, BUT THIS YEAR THERE WAS

2427
01:26:42,319 --> 01:26:45,655
GOING TO BE A REAL CEREMONY.

2428
01:26:45,655 --> 01:26:47,624
AND FRANKLY, WE MISSED OUT BY

2429
01:26:47,624 --> 01:26:49,759
NOT HAVING THIS CEREMONY.

2430
01:26:49,759 --> 01:26:52,462
IT WAS A SPECTACULAR CEREMONY

2431
01:26:52,462 --> 01:26:54,197
LAST FRIDAY IN MASUR AUDITORIUM.

2432
01:26:54,197 --> 01:26:55,866
YOU CAN SEE THE NUMBER OF

2433
01:26:55,866 --> 01:26:58,235
GRADUATES FROM 30 PROGRAMS, THE

2434
01:26:58,235 --> 01:27:00,470
HIGHLIGHT WAS ALL OF THE

2435
01:27:00,470 --> 01:27:02,873
GRADUATING FELLOWS WHOSE YOUNG

2436
01:27:02,873 --> 01:27:07,244
CHILDREN WALKED THE STAGE WITH

2437
01:27:07,244 --> 01:27:09,746
THEM, AND ALTHOUGH SHE COULDN'T

2438
01:27:09,746 --> 01:27:11,548
ATTEND IN PERSON BECAUSE THE

2439
01:27:11,548 --> 01:27:13,049
ADVISORY COUNCIL FOR THE

2440
01:27:13,049 --> 01:27:19,556
DIRECTOR WAS THERE, WAS IN

2441
01:27:19,556 --> 01:27:20,357
SESSION, DR. BERTAGNOLLI

2442
01:27:20,357 --> 01:27:23,693
RECORDED REMARKS WHICH WERE

2443
01:27:23,693 --> 01:27:28,598
VERY, VERY FOCUSED ON THE

2444
01:27:28,598 --> 01:27:29,699
OCCASION AND IT WAS JUST A

2445
01:27:29,699 --> 01:27:31,001
REALLY, REALLY GOOD EVENT.

2446
01:27:31,001 --> 01:27:33,103
WE CAN'T GO BACK AND REDO THE

2447
01:27:33,103 --> 01:27:34,504
ONES FOR THE LAST SIX YEARS, BUT

2448
01:27:34,504 --> 01:27:37,240
I CAN TELL YOU THAT THIS IS A

2449
01:27:37,240 --> 01:27:37,474
KEEPER.

2450
01:27:37,474 --> 01:27:38,508
THE CLINICAL CENTER PROVIDED

2451
01:27:38,508 --> 01:27:40,977
SOME RESOURCES BUT NOT -- IT'S

2452
01:27:40,977 --> 01:27:45,348
NOT ALL THAT EXPENSIVE, AND THIS

2453
01:27:45,348 --> 01:27:47,450
TURNED OUT FOR A FIRST-EVER KIND

2454
01:27:47,450 --> 01:27:48,218
OF EVENT.

2455
01:27:48,218 --> 01:27:49,986
IT TURNED OUT TO BE GREAT.

2456
01:27:49,986 --> 01:27:52,756
I SUSPECT DR. SCHOR TO MY LEFT

2457
01:27:52,756 --> 01:27:54,457
HERE MIGHT BE ASKED TO SPEAK AT

2458
01:27:54,457 --> 01:27:55,825
THIS EVENT SOMETIME IN THE NEAR

2459
01:27:55,825 --> 01:27:56,393
FUTURE.

2460
01:27:56,393 --> 01:28:03,500
YOU JUST NEVER KNOW.

2461
01:28:03,500 --> 01:28:04,901
WHEN WE MET EARLIER THIS YEAR,

2462
01:28:04,901 --> 01:28:05,969
WE TALKED ABOUT A PROGRAM THAT

2463
01:28:05,969 --> 01:28:07,904
WE DID IN DECEMBER IN THE

2464
01:28:07,904 --> 01:28:10,373
CLINICAL CENTER THAT WAS

2465
01:28:10,373 --> 01:28:12,876
ENTITLED ANXIETY, DEPRESSION AND

2466
01:28:12,876 --> 01:28:14,644
SUICIDE PREVENTION.

2467
01:28:14,644 --> 01:28:16,313
AND SOME OF THE CLINICAL CENTER

2468
01:28:16,313 --> 01:28:17,614
RESEARCH HOSPITAL BOARD MEMBERS

2469
01:28:17,614 --> 01:28:19,883
THOUGHT THAT WAS A PRETTY UNIQUE

2470
01:28:19,883 --> 01:28:23,954
EVENT, AND WE PROVIDED THE

2471
01:28:23,954 --> 01:28:26,022
ABILITY TO VIEW THAT PROGRAM TO

2472
01:28:26,022 --> 01:28:27,624
THE CLINICAL CENTER RESEARCH

2473
01:28:27,624 --> 01:28:30,193
HOSPITAL BOARD MEMBERS.

2474
01:28:30,193 --> 01:28:33,363
IT'S NOT -- IT WASN'T GENERALLY

2475
01:28:33,363 --> 01:28:34,898
AVAILABLE TO THE EXTRAMURAL

2476
01:28:34,898 --> 01:28:35,899
AUDIENCE, BUT THE CLINICAL

2477
01:28:35,899 --> 01:28:37,434
CENTER RESEARCH HOSPITAL BOARD

2478
01:28:37,434 --> 01:28:41,271
MEMBERS WERE ALL PRESENTED THAT

2479
01:28:41,271 --> 01:28:41,738
LINK.

2480
01:28:41,738 --> 01:28:47,410
WE HAD THE SECOND CONFERENCE OR

2481
01:28:47,410 --> 01:28:50,246
THE SECOND PRESENTATION ON THE

2482
01:28:50,246 --> 01:28:52,015
SAME -- ESSENTIALLY THE SAME

2483
01:28:52,015 --> 01:28:56,219
TOPIC A FEW WEEKS AGO.

2484
01:28:56,219 --> 01:28:57,487
AND MY CONTRIBUTION TO THIS

2485
01:28:57,487 --> 01:28:58,688
PROGRAM WAS TO SAY, YOU KNOW,

2486
01:28:58,688 --> 01:29:02,192
WHEN I WENT TO MEDICAL SCHOOL

2487
01:29:02,192 --> 01:29:04,160
AND THERE WAS -- AND WHEN WE

2488
01:29:04,160 --> 01:29:05,528
WERE LEARNING ABOUT A DISEASE

2489
01:29:05,528 --> 01:29:07,163
AND THE LEARNING PROCESS

2490
01:29:07,163 --> 01:29:11,401
INVOLVED THOSE WITH LIVED

2491
01:29:11,401 --> 01:29:15,372
EXPERIENCE IT WAS SOME OF THE

2492
01:29:15,372 --> 01:29:16,639
MOST IMPACTFUL LEARNING

2493
01:29:16,639 --> 01:29:17,540
EXPERIENCES I COULD REMEMBER

2494
01:29:17,540 --> 01:29:18,141
DURING MEDICAL SCHOOL.

2495
01:29:18,141 --> 01:29:20,076
AND I SAID I DON'T KNOW THAT

2496
01:29:20,076 --> 01:29:23,146
WE'VE EVER HAD THAT WHEN IT CAME

2497
01:29:23,146 --> 01:29:27,384
TO SUICIDE PREVENTION.

2498
01:29:27,384 --> 01:29:29,953
SO I ASKED THE ORGANIZERS, JOHN

2499
01:29:29,953 --> 01:29:32,989
POLLACK OF OUR SPIRITUAL CARE

2500
01:29:32,989 --> 01:29:34,858
DEPARTMENT AND MARILYN POWELL

2501
01:29:34,858 --> 01:29:36,760
AND LISA HORWITZ OF THE NATIONAL

2502
01:29:36,760 --> 01:29:37,694
INSTITUTE OF MENTAL HEALTH

2503
01:29:37,694 --> 01:29:38,595
WHETHER EVEN A PROGRAM LIKE THAT

2504
01:29:38,595 --> 01:29:43,833
WAS POSSIBLE.

2505
01:29:43,833 --> 01:29:44,601
AND THEY SAID YEAH.

2506
01:29:44,601 --> 01:29:49,906
SO WHAT WE HAD WAS ERIN HARLOWE,

2507
01:29:49,906 --> 01:29:51,408
ADVANCED PRACTICE NURSE AND

2508
01:29:51,408 --> 01:29:52,675
MANAGER OF CHILD ADVOCACY

2509
01:29:52,675 --> 01:29:53,576
PROGRAMS AT CHILDREN'S

2510
01:29:53,576 --> 01:29:55,879
HEALTHCARE OF ATLANTA, WHOSE

2511
01:29:55,879 --> 01:29:59,416
HUSBAND A COUPLE YEARS AGO DIED

2512
01:29:59,416 --> 01:30:03,586
BY SUICIDE.

2513
01:30:03,586 --> 01:30:08,091
AND THEN WE HAD A VERY BRAVE

2514
01:30:08,091 --> 01:30:11,461
PHYSICIAN, DR. WEST, WHO IS

2515
01:30:11,461 --> 01:30:13,997
DIRECTOR OF PROFESSIONAL

2516
01:30:13,997 --> 01:30:15,498
EDUCATION AND THEIR DESIGNATED

2517
01:30:15,498 --> 01:30:18,635
INSTITUTIONAL OFFICIAL, NAVAL

2518
01:30:18,635 --> 01:30:20,403
HOSPITAL JACKSONVILLE, WHO HAD A

2519
01:30:20,403 --> 01:30:21,805
VERY -- WHO MADE A GREAT EFFORT

2520
01:30:21,805 --> 01:30:24,340
TO DIE BY SUICIDE, BUT

2521
01:30:24,340 --> 01:30:27,177
MANAGED -- BUT SURVIVED.

2522
01:30:27,177 --> 01:30:28,278
, COME

2523
01:30:28,278 --> 01:30:30,480
AND SPEND 90 MINUTES WITH US AND

2524
01:30:30,480 --> 01:30:35,418
TO TALK ABOUT LIVED EXPERIENCE

2525
01:30:35,418 --> 01:30:37,153
RELATED TO SUICIDE.

2526
01:30:37,153 --> 01:30:39,122
AND SHARING THEIR STORIES OF

2527
01:30:39,122 --> 01:30:40,423
RECOVERY AND RESILIENCE.

2528
01:30:40,423 --> 01:30:44,594
IT WAS A PRETTY POWERFUL AND

2529
01:30:44,594 --> 01:30:45,562
IMPACTFUL 90 MINUTES.

2530
01:30:45,562 --> 01:30:51,201
WE DO HAVE RECORDINGS OF THAT,

2531
01:30:51,201 --> 01:30:52,602
AND WE WOULD MAKE THAT

2532
01:30:52,602 --> 01:30:52,869
AVAILABLE.

2533
01:30:52,869 --> 01:30:56,873
BUT AGAIN, IN OUR EFFORTS TO

2534
01:30:56,873 --> 01:31:01,244
ADDRESS WELLNESS AND OUR EFFORTS

2535
01:31:01,244 --> 01:31:05,381
TO DEAL WITH THREE OR FOUR

2536
01:31:05,381 --> 01:31:06,616
INCIDENCES THAT HAVE TOUCHED THE

2537
01:31:06,616 --> 01:31:08,351
CLINICAL CENTER FAMILY AND

2538
01:31:08,351 --> 01:31:13,890
PEOPLE WHO HAVE DIED BY SUICIDE,

2539
01:31:13,890 --> 01:31:15,925
IT WAS, I THINK, A GOOD -- IT

2540
01:31:15,925 --> 01:31:17,894
WAS A GOOD -- IT WAS A WONDERFUL

2541
01:31:17,894 --> 01:31:19,863
EVENT FOR MAKING US THINK AND

2542
01:31:19,863 --> 01:31:20,763
SEE THINGS DIFFERENTLY.

2543
01:31:20,763 --> 01:31:21,965
I KNOW I CAME OUT OF THERE

2544
01:31:21,965 --> 01:31:24,467
THINKING A LITTLE BIT

2545
01:31:24,467 --> 01:31:29,172
DIFFERENTLY ABOUT A COUPLE OF

2546
01:31:29,172 --> 01:31:32,675
ISSUES AND WE'LL HAVE A THIRD

2547
01:31:32,675 --> 01:31:34,110
INSTALLMENT COMING UP, I'M NOT

2548
01:31:34,110 --> 01:31:35,879
EXACTLY SURE, WE STILL HAVE TO

2549
01:31:35,879 --> 01:31:37,947
AGREE ON WHAT THE THEME OF THE

2550
01:31:37,947 --> 01:31:40,283
TOPIC IS GOING TO BE, BUT IT MAY

2551
01:31:40,283 --> 01:31:44,554
RELATE TO SUICIDE IN YOUNG

2552
01:31:44,554 --> 01:31:45,755
PEOPLE AS SORT OF THE THIRD

2553
01:31:45,755 --> 01:31:47,924
EVENT.

2554
01:31:47,924 --> 01:31:49,359
SO KUDOS TO ALL THE PEOPLE THAT

2555
01:31:49,359 --> 01:31:52,295
WERE INVOLVED IN ORGANIZING

2556
01:31:52,295 --> 01:31:54,864
THIS, AND IT'S JUST ANOTHER

2557
01:31:54,864 --> 01:31:57,400
EXAMPLE OF WHY -- OF WHAT WE DO

2558
01:31:57,400 --> 01:31:59,569
IN THE CLINICAL CENTER, WHICH IS

2559
01:31:59,569 --> 01:32:01,538
TO NOT AVOID TOPICS THAT ARE

2560
01:32:01,538 --> 01:32:06,442
HARD TO TALK ABOUT.

2561
01:32:06,442 --> 01:32:07,777
WE'RE STILL IN THE PROCESS OF

2562
01:32:07,777 --> 01:32:08,845
REBUILDING THE TEAM.

2563
01:32:08,845 --> 01:32:10,413
WE ARE JUST ABOUT READY TO

2564
01:32:10,413 --> 01:32:11,748
LAUNCH THE SEARCH FOR THE

2565
01:32:11,748 --> 01:32:13,349
CLINICAL CENTER EXECUTIVE

2566
01:32:13,349 --> 01:32:13,816
OFFICER.

2567
01:32:13,816 --> 01:32:16,352
WE ARE DEEP INTO THE SEARCH OF

2568
01:32:16,352 --> 01:32:18,721
THE CLINICAL CENTER CHIEF

2569
01:32:18,721 --> 01:32:20,056
SCIENTIFIC OFFICER, SINCE THE

2570
01:32:20,056 --> 01:32:21,357
RETIREMENT OF DR. GALLIN A YEAR

2571
01:32:21,357 --> 01:32:22,892
AGO.

2572
01:32:22,892 --> 01:32:24,160
WE'RE ALSO IN THE PROCESS OF

2573
01:32:24,160 --> 01:32:25,795
LOOKING FOR THE CHIEF OF THE

2574
01:32:25,795 --> 01:32:27,197
OFFICE OF HOSPITAL

2575
01:32:27,197 --> 01:32:32,235
ADMINISTRATIVE SERVICES OR OHAS.

2576
01:32:32,235 --> 01:32:33,536
WE THINK WE'RE VERY CLOSE TO THE

2577
01:32:33,536 --> 01:32:35,038
END OF THE SEARCH FOR THE CHIEF

2578
01:32:35,038 --> 01:32:38,508
OF PAIN AND PALLIATIVE CARE.

2579
01:32:38,508 --> 01:32:40,109
ANNE COHEN BERGER HAS PRESENTED

2580
01:32:40,109 --> 01:32:42,412
TO THIS GROUP A TIME OR TWO, AND

2581
01:32:42,412 --> 01:32:44,147
ANNE RETIRED AT THE END OF THE

2582
01:32:44,147 --> 01:32:46,783
YEAR AND DR. HADIGAN IS THE

2583
01:32:46,783 --> 01:32:48,318
SELECTING OFFICIAL FOR THE NEXT

2584
01:32:48,318 --> 01:32:50,820
CHIEF THERE, AND WE THINK WE'RE

2585
01:32:50,820 --> 01:32:51,621
CLOSE.

2586
01:32:51,621 --> 01:32:55,358
WE'RE ALSO CLOSING IN ON THE END

2587
01:32:55,358 --> 01:32:58,094
OF A SELECTION FOR A NEW CHIEF

2588
01:32:58,094 --> 01:33:04,234
OF THE SOCIAL WORK DEPARTMENT.

2589
01:33:04,234 --> 01:33:05,768
THIS IS A SLIDE FROM DR. JORDAN

2590
01:33:05,768 --> 01:33:07,537
TO SHOW WHERE WE ARE IN TERMS OF

2591
01:33:07,537 --> 01:33:09,606
OUR MAGNET JOURNEY.

2592
01:33:09,606 --> 01:33:12,242
THE DOCUMENTS ARE ALL IN.

2593
01:33:12,242 --> 01:33:15,011
WE EVEN HEAR RUMORS THAT THE

2594
01:33:15,011 --> 01:33:17,480
ANCC HAS ACTUALLY REVIEWED THE

2595
01:33:17,480 --> 01:33:18,548
DOCUMENTS.

2596
01:33:18,548 --> 01:33:23,219
THE NEXT THING WE EXPECT TO HEAR

2597
01:33:23,219 --> 01:33:24,387
IS PROPOSALS FOR WHEN THEY WOULD

2598
01:33:24,387 --> 01:33:29,192
LIKE TO VISIT WITH US, WHERE

2599
01:33:29,192 --> 01:33:31,761
THEY NEED TO COME MAKE SURE WHAT

2600
01:33:31,761 --> 01:33:33,263
WE SAY WE DO WHEN WE SUBMIT ALL

2601
01:33:33,263 --> 01:33:34,364
THESE DOCUMENTS IS WHAT WE

2602
01:33:34,364 --> 01:33:35,632
ACTUALLY DO IN THE CLINICAL

2603
01:33:35,632 --> 01:33:35,865
CENTER.

2604
01:33:35,865 --> 01:33:40,970
SO WE EXPECT THAT EVENT TO TAKE

2605
01:33:40,970 --> 01:33:42,171
PLACE SOMETIME A LITTLE BIT

2606
01:33:42,171 --> 01:33:46,476
LATER THIS SUMMER OR EARLY THIS

2607
01:33:46,476 --> 01:33:50,413
FALL, AND WE'RE IN THE PROCESS

2608
01:33:50,413 --> 01:33:54,217
OF SORT OF REHEARSING AND

2609
01:33:54,217 --> 01:33:57,920
GETTING READY AND THE PAPERWORK

2610
01:33:57,920 --> 01:34:02,692
IS ALL DONE, NOW IT'S A MATTER

2611
01:34:02,692 --> 01:34:06,829
OF THEIR VISIT.

2612
01:34:06,829 --> 01:34:10,767
OUR NEW WING CONTINUES TO TAKE

2613
01:34:10,767 --> 01:34:12,669
PLACE, SO NO WEATHER ELEMENTS

2614
01:34:12,669 --> 01:34:13,002
DEPICTED HERE.

2615
01:34:13,002 --> 01:34:16,239
THIS WAS A BEAUTIFUL SPRING DAY,

2616
01:34:16,239 --> 01:34:19,242
AND YOU CAN SEE THAT VERTICAL

2617
01:34:19,242 --> 01:34:23,579
CONSTRUCTION IS NOW UNDERWAY,

2618
01:34:23,579 --> 01:34:25,448
AND BY GOING THROUGH ONE OF THE

2619
01:34:25,448 --> 01:34:26,649
INTERSTITIAL SPACES, I CAN GO

2620
01:34:26,649 --> 01:34:28,217
FROM MY OFFICE OUT TO CHECK ON

2621
01:34:28,217 --> 01:34:29,052
THE CONSTRUCTION AND MAKE SURE

2622
01:34:29,052 --> 01:34:31,020
THEY'RE DOING IT RIGHT JUST

2623
01:34:31,020 --> 01:34:32,221
ABOUT THREE OR FOUR TIMES A

2624
01:34:32,221 --> 01:34:34,157
WEEK, WHICH I DO.

2625
01:34:34,157 --> 01:34:37,894
AND SO FAR, IT'S BEEN A LOT OF

2626
01:34:37,894 --> 01:34:40,096
FUN TO WATCH THE PROGRESS.

2627
01:34:40,096 --> 01:34:43,232
LAST NIGHT, THE CLINICAL CENTER

2628
01:34:43,232 --> 01:34:44,701
GOVERNING BOARD, WE HAD A

2629
01:34:44,701 --> 01:34:45,902
DISCUSSION ABOUT THE STRATEGY

2630
01:34:45,902 --> 01:34:48,204
FOR OUTFITTING AND EQUIPPING THE

2631
01:34:48,204 --> 01:34:50,073
NEW SURGERY RADIOLOGY AND

2632
01:34:50,073 --> 01:34:53,476
LABORATORY MEDICINE WING.

2633
01:34:53,476 --> 01:34:54,877
THE CLINICAL CENTER GOVERNING

2634
01:34:54,877 --> 01:34:56,679
BOARD THANKFULLY AGREED WITH THE

2635
01:34:56,679 --> 01:35:00,283
INITIAL PARTS OF OUR PLAN, WHICH

2636
01:35:00,283 --> 01:35:04,120
IS FINALIZING EQUIPMENT LISTS

2637
01:35:04,120 --> 01:35:05,588
AND GETTING A PLAN FOR WHAT

2638
01:35:05,588 --> 01:35:09,592
NEEDS TO COME IN WHEN, WHAT

2639
01:35:09,592 --> 01:35:10,727
NEEDS TO COME IN NOW, WHAT NEEDS

2640
01:35:10,727 --> 01:35:15,331
TO COME IN LATER, AND TRYING TO

2641
01:35:15,331 --> 01:35:20,036
GET BEST VALUE FOR OUR EFFORTS

2642
01:35:20,036 --> 01:35:26,075
IN A VERY ORGANIZED WAY.

2643
01:35:26,075 --> 01:35:27,243
APRIL 25TH WAS A REALLY FUN DAY

2644
01:35:27,243 --> 01:35:30,346
HERE AT THE CLINICAL CENTER.

2645
01:35:30,346 --> 01:35:31,447
WE HAD -- IT WAS THE TAKE YOUR

2646
01:35:31,447 --> 01:35:32,949
CHILD TO WORK DAY.

2647
01:35:32,949 --> 01:35:37,687
IT WAS ALSO EARTH DAY.

2648
01:35:37,687 --> 01:35:38,588
AND IT WAS DNA DAY.

2649
01:35:38,588 --> 01:35:42,091
SO WE HAD A LOT OF THINGS GOING

2650
01:35:42,091 --> 01:35:42,425
ON.

2651
01:35:42,425 --> 01:35:44,026
WE HAVE A NEW SCULPTURE OUT IN

2652
01:35:44,026 --> 01:35:45,027
FRONT OF THE CLINICAL CENTER.

2653
01:35:45,027 --> 01:35:46,763
YOU CAN SEE IT AT LOWER LEFT.

2654
01:35:46,763 --> 01:35:48,765
AND AT LOWER RIGHT.

2655
01:35:48,765 --> 01:35:50,733
THIS -- THE TITLE OF THE

2656
01:35:50,733 --> 01:35:52,301
SCULPTURE IS "THE LADDER," AND

2657
01:35:52,301 --> 01:35:53,870
IT COMES FROM THE OLD TESTAMENT

2658
01:35:53,870 --> 01:35:56,806
STORY OF JACOB'S LADDER BUT ALSO

2659
01:35:56,806 --> 01:36:00,376
RELATES TO THE STRUCTURE OF DNA,

2660
01:36:00,376 --> 01:36:03,579
THEREFORE, FOUR YOUNG CHILDREN

2661
01:36:03,579 --> 01:36:05,181
ON THAT LADDER, I LOVE IT FOR

2662
01:36:05,181 --> 01:36:07,350
THE FACT THAT ARE IT KEEPS

2663
01:36:07,350 --> 01:36:08,718
REMINDING US THAT WE NEED TO BE

2664
01:36:08,718 --> 01:36:10,286
ABLE TO TAKE CARE OF CHILDREN

2665
01:36:10,286 --> 01:36:11,687
WHO ARE A LITTLE YOUNGER IN THE

2666
01:36:11,687 --> 01:36:14,557
CLINICAL CENTER.

2667
01:36:14,557 --> 01:36:19,128
THAT THE CHILDREN ALL HAVE COME

2668
01:36:19,128 --> 01:36:23,099
FROM  DIVERSE BACKGROUNDS AND

2669
01:36:23,099 --> 01:36:25,134
THEY DEPICT THE FOUR MESSENGERS,

2670
01:36:25,134 --> 01:36:28,905
FOUR NUCLEIC ACIDS THAT ARE PART

2671
01:36:28,905 --> 01:36:29,572
OF DNA.

2672
01:36:29,572 --> 01:36:34,677
ON THE LOWER RIGHT, YOU SEE ME

2673
01:36:34,677 --> 01:36:38,881
AND A FAMILY, YOU ALSO SEE

2674
01:36:38,881 --> 01:36:42,151
DR. CINDY TIFT OF THE NATIONAL

2675
01:36:42,151 --> 01:36:43,753
HUMAN GENOME RESEARCH INSTITUTE,

2676
01:36:43,753 --> 01:36:45,488
AND YOU SEE FOUR CHILDREN.

2677
01:36:45,488 --> 01:36:47,690
THREE OF THE FOUR CHILDREN, ALL

2678
01:36:47,690 --> 01:36:50,293
EXCEPT THE YOUNGEST, ARE

2679
01:36:50,293 --> 01:36:55,131
AFFLICTED WITH G

2680
01:36:55,131 --> 01:36:55,665
GM1 GANGLIOCIDOSIS.

2681
01:36:55,665 --> 01:36:57,233
THAT'S THEIR GRANDMOTHER AND

2682
01:36:57,233 --> 01:36:58,534
MOTHER TO THE RIGHT AND THEIR

2683
01:36:58,534 --> 01:37:04,874
FATHER IS ON THE LEFT WITH ME.

2684
01:37:04,874 --> 01:37:05,875
THE THREE CHILDREN WERE

2685
01:37:05,875 --> 01:37:08,277
ESSENTIALLY ON THE LAST PLANE

2686
01:37:08,277 --> 01:37:10,513
OUT OF EUROPE THAT THEY COULD

2687
01:37:10,513 --> 01:37:14,450
GET ON IN ORDER TO GET HERE IN

2688
01:37:14,450 --> 01:37:16,986
2020 AND PARTICIPATE IN THE GENE

2689
01:37:16,986 --> 01:37:25,561
THERAPY TRIAL FOR GM

2690
01:37:25,561 --> 01:37:26,329
GM1 GANGLIOCIDOSIS WHICH IS A

2691
01:37:26,329 --> 01:37:32,635
SORT OF A LATER -- SYDNEY TIFT

2692
01:37:32,635 --> 01:37:33,636
IS THE PI.

2693
01:37:33,636 --> 01:37:34,070
PROTOCOL.

2694
01:37:34,070 --> 01:37:35,605
THE YOUNGEST CHILD, THE FOURTH

2695
01:37:35,605 --> 01:37:36,973
CHILD, IT TAKES A LOT OF COURAGE

2696
01:37:36,973 --> 01:37:38,508
TO BE PARENTS AND TO HAVE THREE

2697
01:37:38,508 --> 01:37:41,143
CHILDREN WHO ARE AFFLICTED BY A

2698
01:37:41,143 --> 01:37:42,778
VERY SIGNIFICANT

2699
01:37:42,778 --> 01:37:47,450
NEURODEGENERATIVE DISEASE, BUT

2700
01:37:47,450 --> 01:37:48,818
PRENATAL TESTING INDICATED THAT

2701
01:37:48,818 --> 01:37:49,685
THE FOURTH CHILD WAS NOT

2702
01:37:49,685 --> 01:37:50,853
AFFLICTED SO THIS WAS ACTUALLY

2703
01:37:50,853 --> 01:37:54,290
OUR OPPORTUNITY TO MEET WITH

2704
01:37:54,290 --> 01:37:56,058
HIM.

2705
01:37:56,058 --> 01:37:59,262
AND SO JUST A FEW DAYS AFTER WE

2706
01:37:59,262 --> 01:38:00,863
UNVEILED THE SCULPTURE, WE WENT

2707
01:38:00,863 --> 01:38:01,998
OUT IN FRONT OF THE CLINICAL

2708
01:38:01,998 --> 01:38:03,432
CENTER, AND I GOT TO HAVE MY

2709
01:38:03,432 --> 01:38:08,037
PICTURE WITH THEM.

2710
01:38:08,037 --> 01:38:10,506
IT WAS THEIR PRESENCE EARLY IN

2711
01:38:10,506 --> 01:38:12,208
THE PANDEMIC WHEN WE WERE

2712
01:38:12,208 --> 01:38:19,315
LARGELY CLOSED DOWN, WAS A VERY

2713
01:38:19,315 --> 01:38:22,752
POWERFUL FACTOR IN THE M MORALEF

2714
01:38:22,752 --> 01:38:23,786
THE STAFF OF THE CLINICAL

2715
01:38:23,786 --> 01:38:24,053
CENTER.

2716
01:38:24,053 --> 01:38:25,855
THEY HAD THE COURAGE TO LEAVE

2717
01:38:25,855 --> 01:38:26,889
EUROPE AS BASICALLY THINGS WERE

2718
01:38:26,889 --> 01:38:28,224
BEING CLOSED DOWN AND STILL MAKE

2719
01:38:28,224 --> 01:38:29,725
THEIR WAY TO THE NIH.

2720
01:38:29,725 --> 01:38:31,694
AND THE FACT THAT WE WERE STILL

2721
01:38:31,694 --> 01:38:37,600
TRYING TO PUSH THE FRONTIERS OF

2722
01:38:37,600 --> 01:38:41,003
TREATMENT FOR THIS HORRIBLE

2723
01:38:41,003 --> 01:38:43,806
NEURODEGENERATIVE DISEASE EVEN

2724
01:38:43,806 --> 01:38:46,876
IN THE MIDST OF A PANDEMIC MEANT

2725
01:38:46,876 --> 01:38:48,578
A LOT TO ALL OF US.

2726
01:38:48,578 --> 01:38:50,079
AND THERE WAS A NICE PIECE IN

2727
01:38:50,079 --> 01:38:52,882
THE WASHINGTON PAPER.

2728
01:38:52,882 --> 01:38:54,917
ANYWAY, IT WAS REALLY COOL.

2729
01:38:54,917 --> 01:38:57,687
THAT'S ALSO ME WITH A PICTURE OF

2730
01:38:57,687 --> 01:39:00,089
THE TWO SONS OF OUR CHIEF BUDGET

2731
01:39:00,089 --> 01:39:01,057
OFFICER.

2732
01:39:01,057 --> 01:39:06,329
THAT'S AUGGIE AND MAGNUS MOSANI.

2733
01:39:06,329 --> 01:39:09,065
IT WAS BETWEEN 3,000 AND 3500

2734
01:39:09,065 --> 01:39:10,933
CHILDREN ON THE NIH CAMPUS FOR

2735
01:39:10,933 --> 01:39:16,305
TAKE YOUR CHILD TO WORK DAY.

2736
01:39:16,305 --> 01:39:17,974
AGAIN I'VE BEEN DOING THIS IN

2737
01:39:17,974 --> 01:39:20,476
LEADERSHIP POSITIONS FOR A LONG

2738
01:39:20,476 --> 01:39:23,145
TIME, AND IT'S A MEASURE OF HOW

2739
01:39:23,145 --> 01:39:24,580
PEOPLE FEEL ABOUT THEIR WORK.

2740
01:39:24,580 --> 01:39:26,749
IT'S A MEASURE OF PEOPLE, HOW

2741
01:39:26,749 --> 01:39:32,188
THEY FEEL ABOUT THEIR WORKPLACE,

2742
01:39:32,188 --> 01:39:34,757
AND IT'S A MEASURE OF THE

2743
01:39:34,757 --> 01:39:36,192
MISSION OF THE PLACE WHERE THE

2744
01:39:36,192 --> 01:39:40,029
WORK IS DONE THAT THEY -- THAT

2745
01:39:40,029 --> 01:39:42,131
SO MANY OF THEM BRING THEIR

2746
01:39:42,131 --> 01:39:48,671
CHILDREN TO WORK ON THAT DAY.

2747
01:39:48,671 --> 01:39:50,006
SO THE JOINT COMMISSION HAS COME

2748
01:39:50,006 --> 01:39:51,574
AND GONE AND DAVID LANG IS GOING

2749
01:39:51,574 --> 01:39:52,675
TO UPDATE YOU AND I'M NOT GOING

2750
01:39:52,675 --> 01:39:57,146
TO STEAL HIS THUNDER.

2751
01:39:57,146 --> 01:39:58,481
THIS IS WHAT OUR CENSUS LOOKS

2752
01:39:58,481 --> 01:39:58,914
LIKE.

2753
01:39:58,914 --> 01:40:00,316
AGAIN, WE'VE COME BACK A LITTLE

2754
01:40:00,316 --> 01:40:01,784
BIT FROM THE SORT OF THE

2755
01:40:01,784 --> 01:40:03,119
PANDEMIC AVERAGES, THE GREEN

2756
01:40:03,119 --> 01:40:06,322
LINE IS THE CURRENT LINE.

2757
01:40:06,322 --> 01:40:10,126
IT'S ABOUT 7 TO 10% INCREASE

2758
01:40:10,126 --> 01:40:13,529
OVER LAST YEAR.

2759
01:40:13,529 --> 01:40:15,564
THESE ARE THE NUMBERS, SO

2760
01:40:15,564 --> 01:40:17,500
INPATIENT ADMISSION IS UP 8%,

2761
01:40:17,500 --> 01:40:18,868
LENGTH OF STAY REALLY HASN'T

2762
01:40:18,868 --> 01:40:19,702
CHANGED VERY MUCH.

2763
01:40:19,702 --> 01:40:21,003
INPATIENT DAYS ARE ACTUALLY UP A

2764
01:40:21,003 --> 01:40:24,006
LITTLE BIT.

2765
01:40:24,006 --> 01:40:26,542
AVERAGE DAILY CENSUS IS UP 10 TO

2766
01:40:26,542 --> 01:40:27,443
12%.

2767
01:40:27,443 --> 01:40:29,779
OUTPATIENT VISITS ARE BASICALLY

2768
01:40:29,779 --> 01:40:31,580
A PUSH.

2769
01:40:31,580 --> 01:40:33,549
AND THE NUMBER OF NEW PATIENTS

2770
01:40:33,549 --> 01:40:34,850
IS ABOUT THE SAME AS IT WAS LAST

2771
01:40:34,850 --> 01:40:36,152
YEAR.

2772
01:40:36,152 --> 01:40:38,587
THIS IS THE FIRST YEAR THAT

2773
01:40:38,587 --> 01:40:39,689
WE'VE SEEN THINGS BEGIN TO COME

2774
01:40:39,689 --> 01:40:41,657
BACK A LITTLE BIT, AND IT'S

2775
01:40:41,657 --> 01:40:45,161
PRETTY ENCOURAGING.

2776
01:40:45,161 --> 01:40:46,595
TELEHEALTH VISITS ARE STILL

2777
01:40:46,595 --> 01:40:48,864
PRETTY STABLE NOW AFTER SORT OF

2778
01:40:48,864 --> 01:40:51,233
THE SURGE AT THE START OF THE

2779
01:40:51,233 --> 01:40:56,138
SHUTDOWN FOR THE PANDEMIC.

2780
01:40:56,138 --> 01:40:57,673
A COUPLE OF SLIDES HERE TO TALK

2781
01:40:57,673 --> 01:41:00,676
ABOUT ARE DIVERSITY, EQUITY AND

2782
01:41:00,676 --> 01:41:01,343
INCLUSION AND ACCESSIBILITY

2783
01:41:01,343 --> 01:41:01,977
PROGRAMS.

2784
01:41:01,977 --> 01:41:03,579
WE HAD A BLACK HISTORY MONTH

2785
01:41:03,579 --> 01:41:05,181
PROGRAM AND ALSO WOMEN'S HISTORY

2786
01:41:05,181 --> 01:41:10,453
MONTH PROGRAM WITH THE BLACK

2787
01:41:10,453 --> 01:41:11,954
HISTORY MONTH PROGRAM, WE HAD A

2788
01:41:11,954 --> 01:41:14,390
GREAT GROUP FROM HOWARD

2789
01:41:14,390 --> 01:41:15,291
UNIVERSITY DEPARTMENT OF MUSIC

2790
01:41:15,291 --> 01:41:16,892
THAT PUT ON A GREAT PERFORMANCE

2791
01:41:16,892 --> 01:41:19,862
IN THE CLINICAL CENTER ATRIUM.

2792
01:41:19,862 --> 01:41:24,867
WOMEN'S HISTORY MONTH WAS A

2793
01:41:24,867 --> 01:41:26,702
COMMUNITY-BASED PARTICIPATORY

2794
01:41:26,702 --> 01:41:30,439
RESEARCH PROGRAM WITH

2795
01:41:30,439 --> 01:41:31,841
DR. MARABEL BELL TRAN FROM

2796
01:41:31,841 --> 01:41:36,479
GEORGETOWN UNIVERSITY.

2797
01:41:36,479 --> 01:41:38,914
WE ALSO HAVE A COUPLE OF NEW

2798
01:41:38,914 --> 01:41:41,417
DEIA INITIATIVES, ONE IS A

2799
01:41:41,417 --> 01:41:42,284
SPANISH ENGLISH EXCHANGE CIRCLE.

2800
01:41:42,284 --> 01:41:45,688
THAT'S PROVEN TO BE VERY

2801
01:41:45,688 --> 01:41:50,426
POPULAR, AND THIS PRESENTATION

2802
01:41:50,426 --> 01:42:01,103
BY SILBIE, CEO OF ECK .

2803
01:42:01,437 --> 01:42:03,272
WE ALSO HAD A PANEL OF SPEAKERS

2804
01:42:03,272 --> 01:42:05,341
INCLUDING DR. WOLIN AND A NUMBER

2805
01:42:05,341 --> 01:42:12,047
OF OTHERS FROM THE NIH TALKING

2806
01:42:12,047 --> 01:42:14,083
ABOUT LESSONS LEARNED FROM

2807
01:42:14,083 --> 01:42:15,451
COVID-19, PROMOTING

2808
01:42:15,451 --> 01:42:16,452
REPRESENTATION OF DIVERSE

2809
01:42:16,452 --> 01:42:17,853
POPULATIONS IN RESEARCH, AND

2810
01:42:17,853 --> 01:42:19,622
FROM MISS ROYSTER AND THE

2811
01:42:19,622 --> 01:42:20,756
PRESENTATION FROM DR. GINSBURG,

2812
01:42:20,756 --> 01:42:22,124
YOU CAN TELL THAT WE HAVE A LOT

2813
01:42:22,124 --> 01:42:24,059
OF GROUPS IN THE NIH FOCUSED ON

2814
01:42:24,059 --> 01:42:27,763
THAT.

2815
01:42:27,763 --> 01:42:29,832
WE ACTUALLY TOOK OUR MASKS OFF

2816
01:42:29,832 --> 01:42:30,199
FINALLY.

2817
01:42:30,199 --> 01:42:32,535
WE WERE PROBABLY AMONG THE VERY

2818
01:42:32,535 --> 01:42:37,873
LAST TO DO IT.

2819
01:42:37,873 --> 01:42:39,842
AND IT'S NOT NO MASKS, IT'S

2820
01:42:39,842 --> 01:42:41,076
MASKS ARE OPTIONAL.

2821
01:42:41,076 --> 01:42:42,044
WE STILL HAVE A NUMBER OF STAFF

2822
01:42:42,044 --> 01:42:44,346
WHO PREFER TO WEAR MASKS, AND WE

2823
01:42:44,346 --> 01:42:45,781
HAVE SOME PATIENTS WHO WOULD

2824
01:42:45,781 --> 01:42:49,084
PREFER THAT WE MASK WHEN THEY'RE

2825
01:42:49,084 --> 01:42:50,619
IN -- WHEN WE ARE IN THEIR

2826
01:42:50,619 --> 01:42:55,658
PRESENCE, AND SO -- AND WE'RE

2827
01:42:55,658 --> 01:42:57,259
VERY UP FRONT WITH THE STAFF

2828
01:42:57,259 --> 01:42:58,661
THAT SAID OKAY, WE'RE GOING

2829
01:42:58,661 --> 01:42:59,829
MASKS OPTIONAL NOW, BUT WE THINK

2830
01:42:59,829 --> 01:43:01,530
IN THE FALL, WHEN WE GET BACK

2831
01:43:01,530 --> 01:43:05,134
INTO RESPIRATORY DISEASE SEASON,

2832
01:43:05,134 --> 01:43:08,204
THAT MASKS WILL BE BACK ON IN

2833
01:43:08,204 --> 01:43:08,871
PATIENT CARE AREAS.

2834
01:43:08,871 --> 01:43:12,608
I WON'T BE VERY POPULAR THAT DAY

2835
01:43:12,608 --> 01:43:13,843
IN THE CLINICAL CENTER, BUT WE

2836
01:43:13,843 --> 01:43:17,580
HAVE PRETTY GOOD EVIDENCE THAT

2837
01:43:17,580 --> 01:43:19,381
NOT JUST IN TERMS OF COVID-19

2838
01:43:19,381 --> 01:43:20,883
TRANSMISSION, BUT IN VIRAL

2839
01:43:20,883 --> 01:43:24,486
DISEASES IN GENERAL, THAT THE

2840
01:43:24,486 --> 01:43:26,188
USE OF MASKS IN OUR PATIENT CARE

2841
01:43:26,188 --> 01:43:29,258
AREAS AND WHEN WE WERE ALL

2842
01:43:29,258 --> 01:43:31,360
MASKING, WE HAD UNIVERSAL

2843
01:43:31,360 --> 01:43:32,494
MASKING EXCEPT WHEN YOU'RE BY

2844
01:43:32,494 --> 01:43:33,429
YOURSELF IN THE OFFICE, THAT WE

2845
01:43:33,429 --> 01:43:34,630
CUT DOWN ON TRANSMISSION, NOT

2846
01:43:34,630 --> 01:43:37,199
JUST OF COVID BUT OF A NUMBER OF

2847
01:43:37,199 --> 01:43:39,702
RESPIRATORY VIRUSES.

2848
01:43:39,702 --> 01:43:42,271
SO WHAT WILL BE ABOUT THIS

2849
01:43:42,271 --> 01:43:43,539
SUMMER AND FALL IS THAT WE STILL

2850
01:43:43,539 --> 01:43:45,140
HAVE A FEW KEY LEADERSHIP

2851
01:43:45,140 --> 01:43:49,411
POSITIONS TO FILL.

2852
01:43:49,411 --> 01:43:52,715
WE WILL CONTINUE TO FOCUS ON

2853
01:43:52,715 --> 01:43:53,349
DIVERSITY, EQUITY, INCLUSION AND

2854
01:43:53,349 --> 01:43:53,682
ACCESSIBILITY.

2855
01:43:53,682 --> 01:43:55,784
WE'RE KIND OF AT A PLATEAU IN

2856
01:43:55,784 --> 01:43:58,587
TERMS OF OUR PEDIATRIC

2857
01:43:58,587 --> 01:43:59,421
INITIATIVES AND WE'LL CONTINUE

2858
01:43:59,421 --> 01:44:03,993
TO HAFOCUS ON STAFF WELL-BEING.

2859
01:44:03,993 --> 01:44:05,227
WE'VE BEEN ON THIS JOURNEY A

2860
01:44:05,227 --> 01:44:06,528
LONG TIME AND WE WANT TO FINISH

2861
01:44:06,528 --> 01:44:07,763
IT, AND WE HAVE TO DO THE THINGS

2862
01:44:07,763 --> 01:44:09,331
WE TOLD THE JOINT COMMISSION WE

2863
01:44:09,331 --> 01:44:12,568
WOULD DO IN OUR RESPONSE TOO.

2864
01:44:12,568 --> 01:44:13,936
WE ALSO ARE SPENDING A LOT OF

2865
01:44:13,936 --> 01:44:16,572
TIME ON THE FY 25 BUDGET.

2866
01:44:16,572 --> 01:44:18,841
WE HAVE A NEW ACRONYM, IT'S

2867
01:44:18,841 --> 01:44:20,542
CALLED NFBY.

2868
01:44:20,542 --> 01:44:25,681
IT MEANS A NO -- A NO-FUN BUDGET

2869
01:44:25,681 --> 01:44:26,882
YEAR.

2870
01:44:26,882 --> 01:44:28,450
'25 WILL BE THE MOST CHALLENGING

2871
01:44:28,450 --> 01:44:29,785
BUDGET YEAR SINCE I ARRIVED IN

2872
01:44:29,785 --> 01:44:30,786
THE CLINICAL CENTER.

2873
01:44:30,786 --> 01:44:32,254
THE STAFF ARE HARD AT WORK ON IT

2874
01:44:32,254 --> 01:44:33,956
AND WE'RE TRYING TO DO THE BEST

2875
01:44:33,956 --> 01:44:35,524
WE CAN WITHOUT SACRIFICING ANY

2876
01:44:35,524 --> 01:44:39,395
OF OUR FOCUS ON PATIENT SAFETY

2877
01:44:39,395 --> 01:44:40,629
OR TURNING PEOPLE AWAY WHO WANT

2878
01:44:40,629 --> 01:44:43,165
TO COME TO THE CLINICAL CENTER.

2879
01:44:43,165 --> 01:44:45,234
BUT IT'S GOING TO -- IT'S TOUGH

2880
01:44:45,234 --> 01:44:47,269
ALL THE WAY AROUND -- WE EXPECT

2881
01:44:47,269 --> 01:44:48,771
TO BE A TOUGH YEAR ALL THE WAY

2882
01:44:48,771 --> 01:44:52,741
AROUND FOR THE NIH.

2883
01:44:52,741 --> 01:44:55,711
SO DAVID HAS PROVIDED YOU OUR

2884
01:44:55,711 --> 01:44:57,913
PATIENT SAFETY METRICS THAT WE

2885
01:44:57,913 --> 01:44:59,548
PROVIDE TO YOU EVERY TIME WE

2886
01:44:59,548 --> 01:45:00,749
MEET.

2887
01:45:00,749 --> 01:45:02,284
AND IF YOU HAVE ANY QUESTIONS,

2888
01:45:02,284 --> 01:45:03,585
DAVID IS HERE, AND YOU CAN ASK

2889
01:45:03,585 --> 01:45:04,053
HIM.

2890
01:45:04,053 --> 01:45:07,823
YOU DON'T HAVE TO ASK ME.

2891
01:45:07,823 --> 01:45:10,059
THIS IS THE REST OF THE AGENDA,

2892
01:45:10,059 --> 01:45:13,796
AND DAVID IS NEXT, AND THEN

2893
01:45:13,796 --> 01:45:18,133
YOU'LL HEAR AN UPDATE ON OUR NIH

2894
01:45:18,133 --> 01:45:19,601
CLINICAL CENTER WEBSITE REDESIGN

2895
01:45:19,601 --> 01:45:21,437
FROM JUSTIN COHEN, AND THEN

2896
01:45:21,437 --> 01:45:24,406
WE'LL WRAP UP WITH ANOTHER

2897
01:45:24,406 --> 01:45:26,475
DISCUSSION ABOUT GENETICS AND

2898
01:45:26,475 --> 01:45:29,578
GENOMICS FROM DR. BILL GAHL,

2899
01:45:29,578 --> 01:45:31,513
WHO'S THE FORMER CLINICAL

2900
01:45:31,513 --> 01:45:33,115
DIRECTOR FOR THE NATIONAL HUMAN

2901
01:45:33,115 --> 01:45:34,350
GENOME RESEARCH INSTITUTE.

2902
01:45:34,350 --> 01:45:36,452
AND HE'S BEEN THE DIRECTOR OF

2903
01:45:36,452 --> 01:45:38,153
THE UNDIAGNOSED DISEASES PROGRAM

2904
01:45:38,153 --> 01:45:43,692
SINCE ITS INCEPTION, AND SO --

2905
01:45:43,692 --> 01:45:45,461
AND I THINK THEN WE HAVE CLOSING

2906
01:45:45,461 --> 01:45:47,429
REMARKS AND WE HAVE ONE MORE

2907
01:45:47,429 --> 01:45:50,466
PICTURE HERE, ONE MORE SLIDE.

2908
01:45:50,466 --> 01:45:54,403
SO THIS IS DR. GAHL AS HE

2909
01:45:54,403 --> 01:45:59,041
APPEARS IN WASHINGTONIAN

2910
01:45:59,041 --> 01:45:59,641
MAGAZINE.

2911
01:45:59,641 --> 01:46:00,776
WE'VE NEVER SEEN BILL LOOK LIKE

2912
01:46:00,776 --> 01:46:01,977
THAT, BUT IT MAKES FOR A GREAT

2913
01:46:01,977 --> 01:46:04,380
PICTURE.

2914
01:46:04,380 --> 01:46:04,980
OKAY?

2915
01:46:04,980 --> 01:46:09,284
ANY QUESTIONS ABOUT THE UPDATE?

2916
01:46:09,284 --> 01:46:12,321
>> I HAD A COMMENT.

2917
01:46:12,321 --> 01:46:14,823
ONE TO SHARE KUDOS TO YOU IN

2918
01:46:14,823 --> 01:46:15,391
PARTICULAR.

2919
01:46:15,391 --> 01:46:16,625
LISTENING TODAY IN TERMS OF THE

2920
01:46:16,625 --> 01:46:17,359
PRESENTATION, THERE'S A THREAD

2921
01:46:17,359 --> 01:46:20,696
THAT MAKES I THINK THE CLINICAL

2922
01:46:20,696 --> 01:46:22,031
CENTER VERY FORTUNATE TO HAVE

2923
01:46:22,031 --> 01:46:22,998
YOUR LEADERSHIP, FROM YOUR STORY

2924
01:46:22,998 --> 01:46:25,401
ABOUT MAKING SURE THAT VAN TOOK

2925
01:46:25,401 --> 01:46:27,169
HIS MONTH LEAVE BEFORE HE CAME

2926
01:46:27,169 --> 01:46:29,505
ON BOARD, AND THEN THE CLINICAL

2927
01:46:29,505 --> 01:46:31,774
CENTER FELLOW CELEBRATION, AND

2928
01:46:31,774 --> 01:46:34,243
THEN FINALLY, I MEAN, IT'S

2929
01:46:34,243 --> 01:46:35,878
PRETTY INNOVATIVE TO HAVE THAT

2930
01:46:35,878 --> 01:46:37,146
SUICIDE PREVENTION AND AWARENESS

2931
01:46:37,146 --> 01:46:38,414
KINDS OF ACTIVITIES.

2932
01:46:38,414 --> 01:46:40,315
SO KUDOS TO YOU FOR YOUR

2933
01:46:40,315 --> 01:46:41,316
LEADERSHIP, MAKING SURE THE

2934
01:46:41,316 --> 01:46:42,818
STAFF ARE RESILIENT IN THE FACE

2935
01:46:42,818 --> 01:46:52,461
OF ALL THESE CHALLENGES.

2936
01:46:52,461 --> 01:46:53,796
>> OKAY.

2937
01:46:53,796 --> 01:46:59,334
THANK YOU.

2938
01:46:59,334 --> 01:47:02,171
>> THE FELLOW GRADUATION,
WAS

2939
01:47:02,171 --> 01:47:03,205
THAT RECORDED OR PICTURES OR

2940
01:47:03,205 --> 01:47:05,274
ANYTHING LIKE THAT?

2941
01:47:05,274 --> 01:47:06,942
>> IT WAS BROADCAST.

2942
01:47:06,942 --> 01:47:08,444
I DON'T KNOW WHETHER IT WAS

2943
01:47:08,444 --> 01:47:15,384
RECORDED, BUT WE CAN FIND OUT.

2944
01:47:15,384 --> 01:47:17,186
>> DR. SAMITT.

2945
01:47:17,186 --> 01:47:19,021
>> THANK YOU AS WELL FOR A

2946
01:47:19,021 --> 01:47:19,688
WONDERFUL UPDATE.

2947
01:47:19,688 --> 01:47:24,359
IT'S EXCITING TO HEAR THE VERY

2948
01:47:24,359 --> 01:47:25,260
THOUGHTFUL AND COMPASSIONATE WAY

2949
01:47:25,260 --> 01:47:26,862
THAT YOU LEAD THE CENTER.

2950
01:47:26,862 --> 01:47:28,097
SO CONGRATULATIONS ON ALL OF

2951
01:47:28,097 --> 01:47:29,465
THAT.

2952
01:47:29,465 --> 01:47:30,632
MY QUESTION IS ACTUALLY ABOUT

2953
01:47:30,632 --> 01:47:34,636
THE MASKING DECISION.

2954
01:47:34,636 --> 01:47:36,738
AND I SUSPECT THERE WILL BE

2955
01:47:36,738 --> 01:47:37,840
ADDITIONAL STUDIES ABOUT THIS,

2956
01:47:37,840 --> 01:47:40,943
BUT HAVE WE HAD KIND OF A

2957
01:47:40,943 --> 01:47:44,746
RETROSPECTIVE REVIEW OF THE

2958
01:47:44,746 --> 01:47:46,882
NON-COVID RELATED RESPIRATORY

2959
01:47:46,882 --> 01:47:47,850
INFECTION AMONGST STAFF OR

2960
01:47:47,850 --> 01:47:49,718
AMONGST PATIENTS PREPANDEMIC?

2961
01:47:49,718 --> 01:47:51,019
AND WHAT'S HAPPENED NOW SINCE

2962
01:47:51,019 --> 01:47:53,489
YOU CONTINUE TO WEAR A MASK POST

2963
01:47:53,489 --> 01:47:54,056
PANDEMIC?

2964
01:47:54,056 --> 01:47:59,061
BECAUSE I SUSPECT, AND I THINK

2965
01:47:59,061 --> 01:48:00,796
THIS HAS OCCURRED ELSEWHERE,

2966
01:48:00,796 --> 01:48:02,397
THAT WE HAVE ACTUALLY AVOIDED

2967
01:48:02,397 --> 01:48:04,032
SECONDARY SORT OF LESS SEVERE

2968
01:48:04,032 --> 01:48:06,001
INFECTIONS THROUGH AN ONGOING

2969
01:48:06,001 --> 01:48:09,004
MASKING STRATEGY, AND WHETHER

2970
01:48:09,004 --> 01:48:11,173
YOU'VE HAD SORT OF THE FORESIGHT

2971
01:48:11,173 --> 01:48:12,708
TO THINK ABOUT WHETHER YOU

2972
01:48:12,708 --> 01:48:14,042
ACTUALLY COULD HAVE SOME OF

2973
01:48:14,042 --> 01:48:16,078
THESE NON-COVID SECONDARY

2974
01:48:16,078 --> 01:48:17,679
RESPIRATORY INFECTIONS ONCE YOU

2975
01:48:17,679 --> 01:48:23,519
REMOVE A MASKING POLICY.

2976
01:48:23,519 --> 01:48:27,956
>> YOUR QUESTION IS REALLY
GOOD.

2977
01:48:27,956 --> 01:48:29,191
EVERY ONCE IN A WHILE SOMEBODY

2978
01:48:29,191 --> 01:48:31,860
WANTS TO BRING UP A RECENT

2979
01:48:31,860 --> 01:48:34,263
COCHRANE REVIEW THAT SUGGESTED

2980
01:48:34,263 --> 01:48:42,304
THAT MASKING WAS NOT EFFECTIVE.

2981
01:48:42,304 --> 01:48:44,406
WE AGREE THAT IF YOU DON'T HAVE

2982
01:48:44,406 --> 01:48:48,544
A PROGRAM THAT TRIES TO ENFORCE

2983
01:48:48,544 --> 01:48:49,511
COMPLIANCE, AND EVERYBODY GETS

2984
01:48:49,511 --> 01:48:52,147
TO DO WHAT THEY WANT TO DO

2985
01:48:52,147 --> 01:48:55,551
WITHOUT ANY EFFORTS, WHEN WE

2986
01:48:55,551 --> 01:49:00,923
FULLY MASKED, WE WERE VERY MUCH

2987
01:49:00,923 --> 01:49:05,994
ON IT.

2988
01:49:05,994 --> 01:49:08,597
SO IT WAS A REAL MASKING

2989
01:49:08,597 --> 01:49:09,031
PROGRAM.

2990
01:49:09,031 --> 01:49:15,370
WE DO HAVE DATA FROM THAT TIME

2991
01:49:15,370 --> 01:49:18,340
THAT COMPARES RESPIRATORY

2992
01:49:18,340 --> 01:49:20,242
ISOLATES DURING THE TIME WHEN

2993
01:49:20,242 --> 01:49:21,777
EVERYBODY WAS MASKING ALL THE

2994
01:49:21,777 --> 01:49:24,279
TIME EXCEPT WHEN THEY WERE BY

2995
01:49:24,279 --> 01:49:27,382
THEMSELVES TO HISTORICAL TIME

2996
01:49:27,382 --> 01:49:30,018
PERIODS WHEN WE WERE STILL

2997
01:49:30,018 --> 01:49:32,287
LOOKING FOR -- WE WERE STILL

2998
01:49:32,287 --> 01:49:33,822
DOING RESPIRATORY ISOLATES, AND

2999
01:49:33,822 --> 01:49:36,425
WE SHOWED THAT THE RESPIRATORY

3000
01:49:36,425 --> 01:49:41,296
ISOLATES OF INFLUENZA A AND B

3001
01:49:41,296 --> 01:49:46,735
AND RSV AND OTHER VIRUSES WAS

3002
01:49:46,735 --> 01:49:47,936
LESS DURING THE TIME THAT WE

3003
01:49:47,936 --> 01:49:54,309
WERE ALL WEARING MASKS.

3004
01:49:54,309 --> 01:50:00,582
NOW, BASICA BAYESIAN ANALYSIS WD

3005
01:50:00,582 --> 01:50:02,217
INDICATE THAT IF THE PRESENCE OF

3006
01:50:02,217 --> 01:50:04,253
THE VIRUS ISN'T VERY HIGH, THEN

3007
01:50:04,253 --> 01:50:05,587
IT'S GOING TO BE REALLY, REALLY

3008
01:50:05,587 --> 01:50:07,422
HARD TO THINK THAT MASKING IS

3009
01:50:07,422 --> 01:50:10,425
GOING TO WORK.

3010
01:50:10,425 --> 01:50:13,829
BUT WHEN THE PREVALENCE IN VIR 

3011
01:50:13,829 --> 01:50:14,563
VIRUSES IN THE COMMUNITY GOES

3012
01:50:14,563 --> 01:50:17,733
UP, WE HAVE THE ABILITY TO LOOK

3013
01:50:17,733 --> 01:50:21,403
AT DATA REGULARLY THAT SUGGEST

3014
01:50:21,403 --> 01:50:23,105
THAT, THAT'S WHEN THE MASKS WILL

3015
01:50:23,105 --> 01:50:26,108
GO BACK ON IN PATIENT CARE

3016
01:50:26,108 --> 01:50:26,575
AREAS.

3017
01:50:26,575 --> 01:50:28,710
WE HOPE THAT WE WON'T HAVE TO GO

3018
01:50:28,710 --> 01:50:31,113
BACK TO EVERYBODY MASKS ALL THE

3019
01:50:31,113 --> 01:50:34,483
TIME, BUT WE DO HAVE SOME DATA

3020
01:50:34,483 --> 01:50:35,984
THAT WAS GENERATED IN THE

3021
01:50:35,984 --> 01:50:41,757
CLINICAL CENTER BY AN EXCELLENT

3022
01:50:41,757 --> 01:50:43,091
MICRO BIOLOGICAL LABORATORIES

3023
01:50:43,091 --> 01:50:44,893
ANALYZED BY EPIDEMIOLOGISTS,

3024
01:50:44,893 --> 01:50:45,994
IT'S BEEN PUBLISHED, I CAN SEND

3025
01:50:45,994 --> 01:50:47,896
YOU THAT, CRAIG, AND LET YOU

3026
01:50:47,896 --> 01:50:52,834
TAKE A LOOK AT IT.

3027
01:50:52,834 --> 01:50:54,036
BUT PEOPLE STILL WANT TO GO TO

3028
01:50:54,036 --> 01:50:56,104
THE COCHRANE REVIEW THAT SAID IT

3029
01:50:56,104 --> 01:50:59,641
DIDN'T WORK, AND WE AGREE THAT A

3030
01:50:59,641 --> 01:51:01,043
VOLUNTARY MASKING PROGRAM

3031
01:51:01,043 --> 01:51:02,577
WITHOUT ANY SORT OF COMPLIANCE

3032
01:51:02,577 --> 01:51:06,148
MEASURES OR ENFORCEMENT MEASURES

3033
01:51:06,148 --> 01:51:07,382
CANNOT WORK.

3034
01:51:07,382 --> 01:51:07,983
>> HELPFUL.

3035
01:51:07,983 --> 01:51:13,922
THANK YOU VERY MUCH.

3036
01:51:13,922 --> 01:51:16,224
>> I'M ASSUMING THAT IT'S
SAFE

3037
01:51:16,224 --> 01:51:19,127
TO PRESUME THAT ANY MASKING

3038
01:51:19,127 --> 01:51:22,431
REQUIREMENTS THAT PREDATED COVID

3039
01:51:22,431 --> 01:51:24,800
SUCH AS DURING CERTAIN

3040
01:51:24,800 --> 01:51:31,039
PROCEDURES LIKE SURGICAL OR

3041
01:51:31,039 --> 01:51:32,274
CERTAIN PULMONARY PROCEDURES,

3042
01:51:32,274 --> 01:51:33,742
THOSE ARE STILL IN PLACE.

3043
01:51:33,742 --> 01:51:34,743
>> ABSOLUTELY.

3044
01:51:34,743 --> 01:51:37,512
THE FINAL DECISION GOES TO THE

3045
01:51:37,512 --> 01:51:38,647
HOSPITAL EPIDEMIOLOGY SERVICE.

3046
01:51:38,647 --> 01:51:39,781
IF SOMEBODY HAS AN INFECTION

3047
01:51:39,781 --> 01:51:41,583
THAT SAYS THEY NEED TO BE

3048
01:51:41,583 --> 01:51:44,553
ISOLATED OR SOMEBODY HAS A

3049
01:51:44,553 --> 01:51:47,322
PROBLEM, THEY'VE GOT NO WHITE

3050
01:51:47,322 --> 01:51:49,725
CELLS, AND THEN THE HOSPITAL

3051
01:51:49,725 --> 01:51:50,592
EPIDEMIOLOGY SERVICE HAS THE

3052
01:51:50,592 --> 01:51:55,731
LAST SAY.

3053
01:51:55,731 --> 01:51:56,865
>> IT IS INTERESTING THAT
THEY

3054
01:51:56,865 --> 01:51:58,834
JUST RECENTLY HAVE COME OUT WITH

3055
01:51:58,834 --> 01:52:04,840
SOME REALLY ANECDOTAL REPORTS

3056
01:52:04,840 --> 01:52:08,877
THAT SINCE THE PERIOD WHEN MOST

3057
01:52:08,877 --> 01:52:12,581
OF US MASKED MOST OF THE TIME,

3058
01:52:12,581 --> 01:52:16,518
WE LOST WHATEVER IMMUNITY WE HAD

3059
01:52:16,518 --> 01:52:18,019
TO THOSE VIRUSES THAT WERE OUT

3060
01:52:18,019 --> 01:52:18,587
THERE.

3061
01:52:18,587 --> 01:52:21,490
SINCE WE'VE UNMASKED, IT'S BEEN

3062
01:52:21,490 --> 01:52:26,728
SAID THAT THE PREVALENCE OF NO 

3063
01:52:26,728 --> 01:52:27,896
NON-COVID COLDS AND THINGS LIKE

3064
01:52:27,896 --> 01:52:29,464
THAT HAS GONE UP, BUT I REALLY

3065
01:52:29,464 --> 01:52:31,266
KNOW OF NO RELIABLE DATA THAT

3066
01:52:31,266 --> 01:52:34,236
WOULD SAY THAT.

3067
01:52:34,236 --> 01:52:35,537
IT'S PEOPLE SAYING, OH, I DIDN'T

3068
01:52:35,537 --> 01:52:36,772
HAVE A COLD IN FIVE YEARS AND

3069
01:52:36,772 --> 01:52:39,107
NOW I HAVE.

3070
01:52:39,107 --> 01:52:41,643
SO NOT REALLY HEAVY-DUTY SCIENCE

3071
01:52:41,643 --> 01:52:44,546
AT THIS POINT.

3072
01:52:44,546 --> 01:52:45,080
OKAY.

3073
01:52:45,080 --> 01:52:49,885
SO AS ADVERTISED, DR. LAN LANG S

3074
01:52:49,885 --> 01:52:52,154
GOING TO TELL US ABOUT THE JOINT

3075
01:52:52,154 --> 01:52:53,822
COMMISSION REPORT.

3076
01:52:53,822 --> 01:52:54,256
>> THANKS.

3077
01:52:54,256 --> 01:52:56,224
GOOD MORNING, EVERYBODY, AND

3078
01:52:56,224 --> 01:52:58,126
THANKS VERY MUCH, DR. SCHOR AND

3079
01:52:58,126 --> 01:52:58,960
THANK YOU VERY MUCH TO THE BOARD

3080
01:52:58,960 --> 01:52:59,761
FOR THIS OPPORTUNITY TO SPEAK TO

3081
01:52:59,761 --> 01:53:00,295
YOU.

3082
01:53:00,295 --> 01:53:02,564
SO AS DR. GILMAN HAD ALLUDED TO,

3083
01:53:02,564 --> 01:53:04,833
IN AN ALTERNATIVE TIMELINE, I

3084
01:53:04,833 --> 01:53:06,401
MAY HAVE BEEN STANDING HERE

3085
01:53:06,401 --> 01:53:08,003
SAYING THAT WE WERE EXPECTING

3086
01:53:08,003 --> 01:53:09,404
THE JOINT COMMISSION ANY DAY AND

3087
01:53:09,404 --> 01:53:11,072
MAYBE THEY'LL EVEN COME THIS

3088
01:53:11,072 --> 01:53:12,674
TUESDAY, BECAUSE OUR PRIOR ONE

3089
01:53:12,674 --> 01:53:15,844
WAS THE LAST DAY OF AUGUST IN

3090
01:53:15,844 --> 01:53:18,814
2021, SO WE KNEW THAT THEY WOULD

3091
01:53:18,814 --> 01:53:20,415
COME SOMETIME IN THE SUMMER.

3092
01:53:20,415 --> 01:53:23,185
THAT WAS IN APRIL, SO INSIDE OUR

3093
01:53:23,185 --> 01:53:24,719
REPORT, SOME OF OUR PREPARATIONS

3094
01:53:24,719 --> 01:53:25,754
THAT WE DID, SOME OF THE THINGS

3095
01:53:25,754 --> 01:53:27,088
THAT HAPPENED OVER THE PAST

3096
01:53:27,088 --> 01:53:28,290
THREE YEARS, AND THEN WHAT

3097
01:53:28,290 --> 01:53:29,825
HAPPENED AT THE SURVEY THAT WE

3098
01:53:29,825 --> 01:53:31,893
HAD.

3099
01:53:31,893 --> 01:53:34,396
SO LIKE I SAID, WE WERE

3100
01:53:34,396 --> 01:53:39,434
EXPECTING AN UNANNOUNCED SURVEY

3101
01:53:39,434 --> 01:53:41,236
AND WE WERE THINKING MAYBE

3102
01:53:41,236 --> 01:53:43,238
SOMETIME IN THE SUMMER, EARLY

3103
01:53:43,238 --> 01:53:44,372
SUMMER, OH, WELL, MAYBE THEY'LL

3104
01:53:44,372 --> 01:53:45,207
COME THIS WEEK.

3105
01:53:45,207 --> 01:53:46,541
AND I'M GOING TO TALK ABOUT SOME

3106
01:53:46,541 --> 01:53:48,877
OF THE THINGS THAT HAPPENED IN

3107
01:53:48,877 --> 01:53:51,012
THE PAST AND OUR PREPARATION.

3108
01:53:51,012 --> 01:53:51,880
SOME OF THE SPECIFIC THINGS WE

3109
01:53:51,880 --> 01:53:53,148
FOUND IN OUR PREPARATIONS IN

3110
01:53:53,148 --> 01:53:54,749
SOME OF OUR MOCK SURVEYS THAT

3111
01:53:54,749 --> 01:53:56,084
THE HOSPITAL HAS FOCUSED ON AND

3112
01:53:56,084 --> 01:53:58,487
CONTINUES TO FOCUS ON, AND THEN

3113
01:53:58,487 --> 01:53:59,354
WE'LL AGAIN TALK ABOUT THE

3114
01:53:59,354 --> 01:54:00,455
RESULTS THERE AND WHAT GOES

3115
01:54:00,455 --> 01:54:06,228
NEXT.

3116
01:54:06,228 --> 01:54:07,863
I DO WANT TO SAY THERE'S BEEN A

3117
01:54:07,863 --> 01:54:09,264
TREMENDOUS AMOUNT OF WORK BY

3118
01:54:09,264 --> 01:54:10,499
EVERYBODY IN THE NIH CLINICAL

3119
01:54:10,499 --> 01:54:13,168
CENTER AND ALL OF OUR INSTITUTE

3120
01:54:13,168 --> 01:54:15,036
PARTNERS WHO BRING PATIENTS TO

3121
01:54:15,036 --> 01:54:15,770
THE CLINICAL CENTER.

3122
01:54:15,770 --> 01:54:17,205
IF I WERE TO THANK EVERYBODY WHO

3123
01:54:17,205 --> 01:54:18,507
DID WORK ON THIS, IT WOULD TAKE

3124
01:54:18,507 --> 01:54:20,475
MORE THAN THE TIME THAT I HAVE,

3125
01:54:20,475 --> 01:54:22,644
JUST TO NAME NAMES.

3126
01:54:22,644 --> 01:54:24,579
SO I WILL HIGHLIGHT A FEW PEOPLE

3127
01:54:24,579 --> 01:54:26,248
ALONG AS WE GO BUT THIS REALLY

3128
01:54:26,248 --> 01:54:27,983
WAS TRULY A GROUP EFFORT ACROSS

3129
01:54:27,983 --> 01:54:29,384
THE INTRAMURAL RESEARCH PROGRAM.

3130
01:54:29,384 --> 01:54:32,654
BUT JUST A QUICK LOOK BACK TO

3131
01:54:32,654 --> 01:54:36,157
2021, THOSE WHO WERE ON THE

3132
01:54:36,157 --> 01:54:37,592
BOARD, THERE WERE SOME

3133
01:54:37,592 --> 01:54:38,727
CONCERNING FINDINGS THAT --

3134
01:54:38,727 --> 01:54:41,129
THERE WAS A GROUPING OF

3135
01:54:41,129 --> 01:54:42,631
CITATIONS IN MULTIPLE STANDARDS,

3136
01:54:42,631 --> 01:54:46,801
ALL THAT HAD TO DO WITH HIGH

3137
01:54:46,801 --> 01:54:48,203
LEVEL DISINFECTION, STERILITY

3138
01:54:48,203 --> 01:54:49,538
AND JUST CERTAIN INSTRUMENTS

3139
01:54:49,538 --> 01:54:50,939
MAKING IT THROUGH THE PROCESS

3140
01:54:50,939 --> 01:54:52,173
UNRECOGNIZED AND EVEN AT THE

3141
01:54:52,173 --> 01:54:56,244
POINT OF USE, STAFF NOT ALWAYS

3142
01:54:56,244 --> 01:54:56,878
RECOGNIZING THIS INSTRUMENT

3143
01:54:56,878 --> 01:54:58,680
SHOULDN'T BE USED, SENT BACK,

3144
01:54:58,680 --> 01:54:59,648
THOSE TYPES OF THINGS.

3145
01:54:59,648 --> 01:55:00,916
SO THAT WAS WHERE A LOT OF WORK

3146
01:55:00,916 --> 01:55:02,617
HAPPENED IMMEDIATELY WHILE THEY

3147
01:55:02,617 --> 01:55:04,386
WERE HERE, AND AS THEY LEFT BACK

3148
01:55:04,386 --> 01:55:05,587
IN 2021, AND THAT WAS A LOT OF

3149
01:55:05,587 --> 01:55:06,888
THE FOCUS FOR THE FIRST SEVERAL

3150
01:55:06,888 --> 01:55:08,323
WEEKS AND MONTHS AND THEN

3151
01:55:08,323 --> 01:55:09,524
ONGOING, AND THEN OF COURSE

3152
01:55:09,524 --> 01:55:11,393
THERE WAS OTHER WORK THAT WAS

3153
01:55:11,393 --> 01:55:13,194
DONE, AND AN ADDITIONAL HIGH

3154
01:55:13,194 --> 01:55:15,063
LEVEL FINDING UNRELATED TO THAT

3155
01:55:15,063 --> 01:55:16,731
BUT GOING BACK TO THE 2021

3156
01:55:16,731 --> 01:55:19,668
SURVEY HAD TO DO WITH THE

3157
01:55:19,668 --> 01:55:20,201
REQUIREMENTS OF THE JOINT

3158
01:55:20,201 --> 01:55:21,736
COMMISSION TO HAVE SCREENING FOR

3159
01:55:21,736 --> 01:55:23,438
ABUSE AND NEGLECT AND WE WERE

3160
01:55:23,438 --> 01:55:25,073
DOING IT AT THE TIME IN

3161
01:55:25,073 --> 01:55:26,508
INPATIENTS BUT NOT OUTPATIENTS,

3162
01:55:26,508 --> 01:55:27,642
SO BRINGING THAT INTO COMPLIANCE

3163
01:55:27,642 --> 01:55:29,411
AS WELL.

3164
01:55:29,411 --> 01:55:32,314
SO AFTER 2021, AGAIN, THE BIG

3165
01:55:32,314 --> 01:55:33,248
THING WAS THE STERILE

3166
01:55:33,248 --> 01:55:33,582
INSTRUMENTS.

3167
01:55:33,582 --> 01:55:35,383
SO THERE WAS REALLY AN OVERHAUL

3168
01:55:35,383 --> 01:55:37,819
OF OUR STERILE INSTRUMENT

3169
01:55:37,819 --> 01:55:39,788
PROGRAM, ONE OF WHICH WAS

3170
01:55:39,788 --> 01:55:43,992
ACTUALLY THE DEPARTMENT LED BY

3171
01:55:43,992 --> 01:55:45,226
BIBI WHOM WE HEARD EARLIER

3172
01:55:45,226 --> 01:55:46,828
RECEIVED AN AWARD AS GREEN

3173
01:55:46,828 --> 01:55:48,063
CHAMPION, ALSO REALLY AGAIN A

3174
01:55:48,063 --> 01:55:49,230
TREMENDOUS AMOUNT OF WORK BY HER

3175
01:55:49,230 --> 01:55:52,734
AND HER STAFF BUT IT WAS MOVED

3176
01:55:52,734 --> 01:55:53,268
ORGANIZATIONALLY INTO THE

3177
01:55:53,268 --> 01:55:54,269
NURSING DEPARTMENT, AND THAT

3178
01:55:54,269 --> 01:55:57,839
REALLY ENSURED THAT THEY HAD A

3179
01:55:57,839 --> 01:55:59,574
CLOSE RELATIONSHIP AND THE

3180
01:55:59,574 --> 01:56:01,443
SUPPORT THAT THEY NEEDED SO IF

3181
01:56:01,443 --> 01:56:03,612
THERE WERE ANY PROBLEMS OR

3182
01:56:03,612 --> 01:56:06,314
NEEDS, IT COULD BE ESCALATED

3183
01:56:06,314 --> 01:56:07,315
APPROPRIATELY, AND THAT WAS AN

3184
01:56:07,315 --> 01:56:08,383
ORGANIZATIONAL CHANGE BUT IT WAS

3185
01:56:08,383 --> 01:56:10,151
ALSO JUST AN OVERHAUL OF HOW WE

3186
01:56:10,151 --> 01:56:12,287
WERE DOING CERTAIN THINGS.

3187
01:56:12,287 --> 01:56:14,222
ALONG WITH THAT WAS MANAGEMENT

3188
01:56:14,222 --> 01:56:18,526
OF INSTRUMENTS ON UNITS.

3189
01:56:18,526 --> 01:56:19,394
MAKING SURE THAT ONLY THE

3190
01:56:19,394 --> 01:56:21,162
SUPPLIES NEEDED WERE ON UNITS,

3191
01:56:21,162 --> 01:56:22,797
THAT THEY WEREN'T OVERSTOCKED,

3192
01:56:22,797 --> 01:56:24,165
THAT THINGS WEREN'T STUFFED INTO

3193
01:56:24,165 --> 01:56:26,468
OUTSIDE OF THE NORMAL INVENTORY

3194
01:56:26,468 --> 01:56:27,335
MANAGEMENT, THAT SORT OF THING.

3195
01:56:27,335 --> 01:56:29,504
AGAIN ALL OF THIS REQUIRED A

3196
01:56:29,504 --> 01:56:30,271
TREMENDOUS AMOUNT OF

3197
01:56:30,271 --> 01:56:32,907
COLLABORATION WITH OUR INSTITUTE

3198
01:56:32,907 --> 01:56:34,743
PARTNERS IN COLLABORATION WITH

3199
01:56:34,743 --> 01:56:37,178
EVERYONE, BECAUSE FOLKS MAYBE

3200
01:56:37,178 --> 01:56:38,980
HAD WAYS THEY WERE DOING THINGS

3201
01:56:38,980 --> 01:56:39,914
AND REALLY TO BRING EVERYONE

3202
01:56:39,914 --> 01:56:41,249
ALONG TO SAY LET'S DO THINGS A

3203
01:56:41,249 --> 01:56:42,417
LITTLE BIT DIFFERENTLY JUST SO

3204
01:56:42,417 --> 01:56:43,652
WE CAN ALL DO THINGS REALLY,

3205
01:56:43,652 --> 01:56:44,753
REALLY WELL.

3206
01:56:44,753 --> 01:56:46,921
ALONG THAT LINES, THERE WAS

3207
01:56:46,921 --> 01:56:48,390
AGAIN SORT OF IMMEDIATE

3208
01:56:48,390 --> 01:56:49,658
AFTERMATH OF THAT PRIOR VISIT,

3209
01:56:49,658 --> 01:56:50,859
THERE WAS A NEW TRAINING MODULE

3210
01:56:50,859 --> 01:56:52,260
THAT WAS PUT INTO PLACE TO MAKE

3211
01:56:52,260 --> 01:56:53,662
SURE EVERYBODY TOOK IT, REALLY

3212
01:56:53,662 --> 01:56:54,763
JUST SOME NUTS AND BOLTS WHAT TO

3213
01:56:54,763 --> 01:56:56,731
LOOK FOR, WHAT TO RECOGNIZE AT

3214
01:56:56,731 --> 01:56:58,233
THE POINT OF USE.

3215
01:56:58,233 --> 01:57:00,368
THIS WAS THEN REVISED AND

3216
01:57:00,368 --> 01:57:02,370
UPDATED IN 2023 AND IS NOW PART

3217
01:57:02,370 --> 01:57:05,507
OF OUR ANNUAL TRAINING

3218
01:57:05,507 --> 01:57:05,907
REQUIREMENT.

3219
01:57:05,907 --> 01:57:07,242
LIKE I SAID IT WAS A POINT OF

3220
01:57:07,242 --> 01:57:07,676
EMPHASIS.

3221
01:57:07,676 --> 01:57:09,210
ON THAT OTHER TOPIC THAT I HAD,

3222
01:57:09,210 --> 01:57:12,914
THERE WERE SOME UPDATES AND SOME

3223
01:57:12,914 --> 01:57:14,883
CHANGES TO TWO OF OUR MEDICAL

3224
01:57:14,883 --> 01:57:15,817
ADMINISTRATIVE SERIES POLICIES

3225
01:57:15,817 --> 01:57:17,719
HAVING TO DO WITH SCREENING FOR

3226
01:57:17,719 --> 01:57:19,654
ABUSE AND NEGLECT AND ALSO SOME

3227
01:57:19,654 --> 01:57:21,589
NEW PROCESSES PUT IN PLACE BY

3228
01:57:21,589 --> 01:57:22,390
THE CLINICAL CENTER NURSING

3229
01:57:22,390 --> 01:57:23,291
DEPARTMENT TO BRING THAT INTO

3230
01:57:23,291 --> 01:57:25,727
COMPLIANCE.

3231
01:57:25,727 --> 01:57:27,195
SO THAT WAS 2021, AND OF COURSE

3232
01:57:27,195 --> 01:57:28,396
AS WE BROUGHT THAT INTO

3233
01:57:28,396 --> 01:57:30,098
COMPLIANCE, WE ALSO WERE LIKE

3234
01:57:30,098 --> 01:57:32,333
HOW DO WE PREPARE FOR 2024.

3235
01:57:32,333 --> 01:57:33,702
AND I DO WANT TO SAY THIS IS ONE

3236
01:57:33,702 --> 01:57:35,236
OF THE AREAS WHERE THERE WERE SO

3237
01:57:35,236 --> 01:57:38,373
MANY PEOPLE THAT WERE TOO MANY

3238
01:57:38,373 --> 01:57:39,607
TO NAME BUT I DO WANT TO

3239
01:57:39,607 --> 01:57:40,975
RECOGNIZE IN MY OFFICE KIM

3240
01:57:40,975 --> 01:57:42,744
NELSON REALLY TOOK THE LEAD IN

3241
01:57:42,744 --> 01:57:44,345
THE PAST YEAR ON A LOT OF THESE

3242
01:57:44,345 --> 01:57:45,580
PREPARATIONS.

3243
01:57:45,580 --> 01:57:48,316
BUT ONE OF THE THINGS THAT WE DO

3244
01:57:48,316 --> 01:57:50,919
IS CALLED A FOCUS STANDARD

3245
01:57:50,919 --> 01:57:51,586
ASSESSMENT, SOMETHING PROVIDED

3246
01:57:51,586 --> 01:57:54,289
BY THE JOINT COMMISSION WHERE

3247
01:57:54,289 --> 01:57:55,490
EACH STANDARD, AND THERE'S

3248
01:57:55,490 --> 01:57:56,925
HUNDREDS OF THEM, IF YOU LOOK AT

3249
01:57:56,925 --> 01:57:58,626
THE ELEMENTS OF PE PERFORMANCE,T

3250
01:57:58,626 --> 01:58:00,161
GETS UP CLOSE TO A THOUSAND,

3251
01:58:00,161 --> 01:58:01,596
EACH LOOKS AT DO WE COMPLY WITH

3252
01:58:01,596 --> 01:58:02,864
THIS AND HOW DO WE COMPLY WITH

3253
01:58:02,864 --> 01:58:04,933
IT.

3254
01:58:04,933 --> 01:58:09,971
SO IT INVOLVES CHAPTER COMAM CHS

3255
01:58:09,971 --> 01:58:11,306
ASKING THEM, INDIVIDUALS, CAN

3256
01:58:11,306 --> 01:58:12,440
YOU LOOK THROUGH THIS IN DETAIL,

3257
01:58:12,440 --> 01:58:14,442
HOW DO WE HAVE IT WHERE THERE'S

3258
01:58:14,442 --> 01:58:15,210
REQUIRED DOCUMENTATIONS, WHERE

3259
01:58:15,210 --> 01:58:16,845
ARE THOSE DOCUMENTS, THAT SORT

3260
01:58:16,845 --> 01:58:19,447
OF THING.

3261
01:58:19,447 --> 01:58:21,316
THEN WE WOULD MEET MONTHLY TO

3262
01:58:21,316 --> 01:58:22,717
SHARE THE FINDINGS NOT JUST TO

3263
01:58:22,717 --> 01:58:23,585
REPORT OUT THIS IS WHAT HAPPENED

3264
01:58:23,585 --> 01:58:25,220
IN MY CHAPTER, BUT SO THAT WE

3265
01:58:25,220 --> 01:58:26,454
COULD SHARE SOME FINDINGS THAT

3266
01:58:26,454 --> 01:58:27,922
GO ACROSS CHAPTERS AND SHARE

3267
01:58:27,922 --> 01:58:29,124
SOME CHALLENGES REALLY TO MAKE

3268
01:58:29,124 --> 01:58:30,125
SURE THAT EVERYBODY HAD WHAT

3269
01:58:30,125 --> 01:58:33,528
THEY NEEDED TO WHERE WE NEEDED A

3270
01:58:33,528 --> 01:58:34,562
LITTLE MORE HELP, BRIQ THAT

3271
01:58:34,562 --> 01:58:34,996
ALONG.

3272
01:58:34,996 --> 01:58:37,298
WE DID BRING IN AN OUTSIDE

3273
01:58:37,298 --> 01:58:40,001
CONSULTANT TO DO A MOCK SURVEY

3274
01:58:40,001 --> 01:58:41,503
OVER THE COURSE OF TWO DAYS BACK

3275
01:58:41,503 --> 01:58:43,004
IN FEBRUARY OF 2023, AND THAT

3276
01:58:43,004 --> 01:58:44,973
REALLY FELT A LOT LIKE A JOINT

3277
01:58:44,973 --> 01:58:45,373
COMMISSION SURVEY.

3278
01:58:45,373 --> 01:58:46,508
IN FACT IN SOME WAYS IT WAS A

3279
01:58:46,508 --> 01:58:47,909
LITTLE BIT MORE INTENSE.

3280
01:58:47,909 --> 01:58:50,111
THEY SAID TO US, YOU KNOW, WE

3281
01:58:50,111 --> 01:58:51,746
INTENTIONALLY WILL MAKE THIS

3282
01:58:51,746 --> 01:58:53,214
MAYBE EVEN MORE PICKY THAN THE

3283
01:58:53,214 --> 01:58:54,249
JOINT COMMISSION WILL BE BECAUSE

3284
01:58:54,249 --> 01:58:55,784
WE WANT -- IF THERE'S SOMETHING

3285
01:58:55,784 --> 01:58:57,085
TO BE FOUND, WE WANT YOU TO FIND

3286
01:58:57,085 --> 01:58:58,720
IT WITH US RATHER THAN FIND IT

3287
01:58:58,720 --> 01:59:02,624
WHEN THE SURVEYORS GET HERE.

3288
01:59:02,624 --> 01:59:06,361
AND THEN TOOK THOSE FINDINGS AND

3289
01:59:06,361 --> 01:59:07,629
DID JUST WHAT WE WOULD DO AFTER

3290
01:59:07,629 --> 01:59:09,230
A REGULAR JOINT COMMISSION

3291
01:59:09,230 --> 01:59:10,365
FINDING, WHICH IS TO SAY HOW

3292
01:59:10,365 --> 01:59:11,666
WOULD WE BRING THINGS INTO

3293
01:59:11,666 --> 01:59:13,768
COMPLIANCE, HOW WOULD WE

3294
01:59:13,768 --> 01:59:16,571
ACTUALLY SHOW WE ACTUALLY WERE

3295
01:59:16,571 --> 01:59:17,539
IN COMPLIANCE, THAT'S SORTS OF

3296
01:59:17,539 --> 01:59:17,772
THINGS.

3297
01:59:17,772 --> 01:59:19,974
WE LEARNED ALONG THE WAY, SOME

3298
01:59:19,974 --> 01:59:21,376
OF THOSE WHO WERE KIND OF CLOSER

3299
01:59:21,376 --> 01:59:23,878
TO THE EVENT ITSELF NEEDED SOME

3300
01:59:23,878 --> 01:59:25,613
COACHING UP ON REALLY WHAT I

3301
01:59:25,613 --> 01:59:29,317
CALL SURVEY MANAGEMENT.

3302
01:59:29,317 --> 01:59:30,685
NOT THAT -- THE HOSPITAL IS

3303
01:59:30,685 --> 01:59:31,452
DOING EVERYTHING WE'RE SUPPOSED

3304
01:59:31,452 --> 01:59:32,787
TO DO BUT HOW CAN WE SHOW THAT,

3305
01:59:32,787 --> 01:59:34,155
HOW CAN WE MAKE SURE THAT WE

3306
01:59:34,155 --> 01:59:35,523
HAVE THE INFORMATION THAT THE

3307
01:59:35,523 --> 01:59:36,457
SURVEYORS WANT AT THE POINT THAT

3308
01:59:36,457 --> 01:59:37,192
THEY NEED IT.

3309
01:59:37,192 --> 01:59:39,627
HOW DO WE ORGANIZE OUR TEAM SO

3310
01:59:39,627 --> 01:59:40,995
THAT WHEN THEY ASK FOR

3311
01:59:40,995 --> 01:59:42,730
SOMETHING, WE HAVE THAT

3312
01:59:42,730 --> 01:59:43,932
AVAILABLE, THOSE SORTS OF

3313
01:59:43,932 --> 01:59:44,465
THINGS.

3314
01:59:44,465 --> 01:59:46,701
ALSO BECAUSE OF THE OBVIOUS

3315
01:59:46,701 --> 01:59:48,069
CONCERNS ABOUT INFECTION CONTROL

3316
01:59:48,069 --> 01:59:50,238
AND THE PAST FINDINGS, WE THEN

3317
01:59:50,238 --> 01:59:53,208
HAD A SECOND JUST FOCUSED JOINT

3318
01:59:53,208 --> 01:59:54,909
COMMISSION -- I'M SORRY --

3319
01:59:54,909 --> 01:59:56,544
FOCUSED INFECTION CONTROL FOCUS

3320
01:59:56,544 --> 01:59:58,413
SURVEY WITH AN OUTSIDE -- THE

3321
01:59:58,413 --> 02:00:00,715
SAME GROUP OF OUTSIDE

3322
02:00:00,715 --> 02:00:02,217
CONSULTANTS BUT WITH A PERSON

3323
02:00:02,217 --> 02:00:04,085
WHO WAS AN EXPERT IN INFECTIOUS

3324
02:00:04,085 --> 02:00:05,587
DISEASES REALLY FOCUSED ON --

3325
02:00:05,587 --> 02:00:06,788
ALL OF THESE CHANGES AND ALL THE

3326
02:00:06,788 --> 02:00:08,857
STUFF THAT YOU'VE FOCUSED ON

3327
02:00:08,857 --> 02:00:10,825
SINCE 2021, HOW HAS THAT GOTTEN

3328
02:00:10,825 --> 02:00:11,993
YOU, HOW HAVE WE DONE.

3329
02:00:11,993 --> 02:00:14,529
SO WE CAN GET HER FEEDBACK.

3330
02:00:14,529 --> 02:00:19,167
AS IT TURNS OUT COINCIDENTALLY,

3331
02:00:19,167 --> 02:00:20,735
WAS ABOUT TWO WEEKS BEFORE THE

3332
02:00:20,735 --> 02:00:21,703
SURVEY ACTUALLY CAME.

3333
02:00:21,703 --> 02:00:25,974
SO THAT WAS GO GOOD.

3334
02:00:25,974 --> 02:00:28,176
IN ADDITION WE HAD AN INTERNAL

3335
02:00:28,176 --> 02:00:29,577
MOCK SURVEY WHERE AGAIN KIM

3336
02:00:29,577 --> 02:00:30,545
HELPED ORGANIZE THIS AND WE SAID

3337
02:00:30,545 --> 02:00:32,180
WE'RE NOT GOING TO BRING IN

3338
02:00:32,180 --> 02:00:33,314
OUTSIDER, WE'RE GOING TO BE THE

3339
02:00:33,314 --> 02:00:33,581
SURVEYORS.

3340
02:00:33,581 --> 02:00:34,716
SO SOME OF US ACTED IN THE ROLE

3341
02:00:34,716 --> 02:00:36,851
OF SURVEYORS, OTHERS DID WHAT WE

3342
02:00:36,851 --> 02:00:40,021
WOULD DO IN THE REAL THING, AND

3343
02:00:40,021 --> 02:00:42,056
WE REALLY HAD A PRACTICE OF SOME

3344
02:00:42,056 --> 02:00:43,691
OF THE SESSIONS AGAIN, SO THAT

3345
02:00:43,691 --> 02:00:46,160
WHEN WE'RE TALKING, WHAT KIND OF

3346
02:00:46,160 --> 02:00:48,396
ANSWERS, NOT HOW TO ANSWER BUT

3347
02:00:48,396 --> 02:00:49,530
WHAT INFORMATION WILL THEY ASK

3348
02:00:49,530 --> 02:00:51,933
FOR SO THAT WE'RE READY TO

3349
02:00:51,933 --> 02:00:52,533
ANSWER APPROPRIATELY.

3350
02:00:52,533 --> 02:00:54,702
AND ALL THAT KIND OF WAS A WAY

3351
02:00:54,702 --> 02:00:56,104
TO GET US READY BOTH TO LOOK AT

3352
02:00:56,104 --> 02:00:57,639
WHERE WE WERE AS A HOSPITAL AND

3353
02:00:57,639 --> 02:01:00,475
ALSO TO BE KIND OF READY FOR THE

3354
02:01:00,475 --> 02:01:02,543
SHOW, SO TO SPEAK, THEN THE

3355
02:01:02,543 --> 02:01:03,645
JOINT COMMISSION WOUND UP

3356
02:01:03,645 --> 02:01:03,878
COMING.

3357
02:01:03,878 --> 02:01:06,347
IN ADDITION TO THIS, WE'VE HAD

3358
02:01:06,347 --> 02:01:06,915
LEADERSHIP SAFETY ROUNDS,

3359
02:01:06,915 --> 02:01:09,550
SOMETHING THAT THE EXECUTIVES

3360
02:01:09,550 --> 02:01:10,985
GO -- WE WERE GOING THREE GROUPS

3361
02:01:10,985 --> 02:01:14,088
WERE GOING IN PAIRS AROUND THE

3362
02:01:14,088 --> 02:01:15,423
HOSPITAL, EACH TUESDAY, WE WOULD

3363
02:01:15,423 --> 02:01:16,891
PICK A UNIT OR TWO FOR EACH

3364
02:01:16,891 --> 02:01:21,963
DWREUP TO GO TGROUP TO GO TO ANH

3365
02:01:21,963 --> 02:01:23,731
THE STAFF, ASK THEM WHAT ARE

3366
02:01:23,731 --> 02:01:25,767
YOUR SAFETY CONCERNS, WHERE DO

3367
02:01:25,767 --> 02:01:27,335
YOU SEE THAT WE NEED TO DO SOME

3368
02:01:27,335 --> 02:01:29,504
WORK, WHAT WOULD YOU LIKE TO

3369
02:01:29,504 --> 02:01:33,207
TELL US, AND ONE OF THE POINTS

3370
02:01:33,207 --> 02:01:35,376
OF EMPHASIS THAT WE'VE NOTICED

3371
02:01:35,376 --> 02:01:38,880
IS THIS MEDICATION MANAGEMENT,

3372
02:01:38,880 --> 02:01:40,748
OR THIS SUPPLY MANAGEMENT SO WE

3373
02:01:40,748 --> 02:01:42,083
WANT TO TALK TO YOU A LITTLE BIT

3374
02:01:42,083 --> 02:01:44,752
ABOUT THAT AS WELL, SO REALLY AN

3375
02:01:44,752 --> 02:01:45,620
INTERACTIVE CONVERSATION.

3376
02:01:45,620 --> 02:01:48,056
THAT'S NOW GOING ON AGAIN, WE

3377
02:01:48,056 --> 02:01:49,557
KIND OF TOOK A SMALL BREAK RIGHT

3378
02:01:49,557 --> 02:01:50,858
AFTER THE JOINT COMMISSION CAME

3379
02:01:50,858 --> 02:01:52,760
AND NOW WE'VE RESTARTED THAT.

3380
02:01:52,760 --> 02:01:57,732
TRACERS ARE WHERE THERE IS A

3381
02:01:57,732 --> 02:02:00,134
SPECIFIC LOCATION OR SPECIFIC

3382
02:02:00,134 --> 02:02:03,237
JOINT COMMISSION SET OF

3383
02:02:03,237 --> 02:02:04,305
STANDARDS, WE'RE GOING TO GO TO

3384
02:02:04,305 --> 02:02:06,708
THIS AREA AND REALLY GO THROUGH

3385
02:02:06,708 --> 02:02:07,408
WHAT HAPPENS IN THE KICH EB,

3386
02:02:07,408 --> 02:02:11,579
WHKITCHEN,WHAT HAPPENS IN THIS E

3387
02:02:11,579 --> 02:02:13,514
SAW THE LIFECYCLE OF A BLOOD

3388
02:02:13,514 --> 02:02:14,716
TRANSFUSION, DO A TRACER OF

3389
02:02:14,716 --> 02:02:19,754
THOSE AND THEN THE SURVEY -- TO

3390
02:02:19,754 --> 02:02:20,355
PROVIDE STAFF WITH INFORMATION

3391
02:02:20,355 --> 02:02:21,723
THEY NEEDED.

3392
02:02:21,723 --> 02:02:25,326
AND THEN THINGS MAYBE MORE

3393
02:02:25,326 --> 02:02:25,960
INDIVIDUALIZED, SO SAFETY

3394
02:02:25,960 --> 02:02:27,528
MOMENTS AT ALL SORTS OF

3395
02:02:27,528 --> 02:02:28,696
MEETINGS, POINTS OF EMPHASIS,

3396
02:02:28,696 --> 02:02:30,498
SENDING OUT EMAILS WITH

3397
02:02:30,498 --> 02:02:30,798
INFORMATION.

3398
02:02:30,798 --> 02:02:32,700
SO ALL THIS WAS LEADING TO OUR

3399
02:02:32,700 --> 02:02:36,004
PREPARATIONS, AND THEN WE ALSO

3400
02:02:36,004 --> 02:02:36,637
NOTICED THERE WERE SOME

3401
02:02:36,637 --> 02:02:37,872
REQUIREMENTS THAT WERE NEW

3402
02:02:37,872 --> 02:02:39,407
EITHER THIS YEAR OR NEW OVER THE

3403
02:02:39,407 --> 02:02:40,775
PAST FEW YEARS, BUT SINCE OUR

3404
02:02:40,775 --> 02:02:41,342
PRIOR SURVEY.

3405
02:02:41,342 --> 02:02:43,711
TWO OF THEM THAT I WANT TO

3406
02:02:43,711 --> 02:02:46,214
HIGHLIGHT IS THAT THERE WAS --

3407
02:02:46,214 --> 02:02:47,782
THE JOINT COMMISSION IS VERY

3408
02:02:47,782 --> 02:02:49,417
INTERESTED IN -- AND CONCERNED

3409
02:02:49,417 --> 02:02:50,318
ABOUT WORKPLACE VIOLENCE

3410
02:02:50,318 --> 02:02:52,353
PREVENTION AND THIS INCLUDES

3411
02:02:52,353 --> 02:02:55,356
BOTH PHYSICAL SAFETY BUT ALSO

3412
02:02:55,356 --> 02:02:57,358
PSYCHOLOGICAL SAFETY OF THE

3413
02:02:57,358 --> 02:02:58,026
STAFF.

3414
02:02:58,026 --> 02:02:59,794
WE'VE TALKED ABOUT BEING ON A

3415
02:02:59,794 --> 02:03:00,995
FEDERAL CAMPUS AND HAVING GATES

3416
02:03:00,995 --> 02:03:01,562
AND GUARDS.

3417
02:03:01,562 --> 02:03:04,565
WE MIGHT BE A LITTLE BIT LESS

3418
02:03:04,565 --> 02:03:05,333
SUSCEPTIBLE TO CERTAIN THINGS

3419
02:03:05,333 --> 02:03:06,968
THAT COULD HAPPEN AT OTHER

3420
02:03:06,968 --> 02:03:08,202
HOSPITALS, BUT FROM THE

3421
02:03:08,202 --> 02:03:09,404
PSYCHOLOGICAL SAFETY, IT'S

3422
02:03:09,404 --> 02:03:11,172
EQUALLY IMPORTANT AS WELL AS THE

3423
02:03:11,172 --> 02:03:12,106
PHYSICAL SAFETY.

3424
02:03:12,106 --> 02:03:13,841
SO THAT'S PART OF THE LEADERSHIP

3425
02:03:13,841 --> 02:03:17,712
CHAPTER, AND WE ACTUALLY HAVE

3426
02:03:17,712 --> 02:03:19,047
WHAT THE STANDARDS ARE,

3427
02:03:19,047 --> 02:03:20,648
INCLUDING HAVING A WORKPLACE

3428
02:03:20,648 --> 02:03:21,482
VIOLENCE PREVENTION PROGRAM

3429
02:03:21,482 --> 02:03:23,885
THAT'S LED BY A DESIGNATED

3430
02:03:23,885 --> 02:03:26,621
INDIVIDUAL, SO OUR COO AND OUR

3431
02:03:26,621 --> 02:03:28,456
CNO ARE THE CO-LEADERS OF THE

3432
02:03:28,456 --> 02:03:29,690
WORKPLACE VIOLENCE PREVENTION

3433
02:03:29,690 --> 02:03:32,093
PROGRAM.

3434
02:03:32,093 --> 02:03:34,462
AND THAT INCLUDES MANY -- WE MAY

3435
02:03:34,462 --> 02:03:36,664
HAVE A SEPARATE PRESENTATION ON

3436
02:03:36,664 --> 02:03:37,865
ALL THE THINGS THAT HAVE BEEN

3437
02:03:37,865 --> 02:03:38,833
PUT IN WITH THAT.

3438
02:03:38,833 --> 02:03:40,635
AND THEN HEALTHCARE DISPARITIES

3439
02:03:40,635 --> 02:03:43,604
IS A BIG INTEREST OF THE JOINT

3440
02:03:43,604 --> 02:03:47,575
COMMISSION AND ANOTHER ONE IS A

3441
02:03:47,575 --> 02:03:58,019
STANDARD OF A NATIONAL --

3442
02:03:58,453 --> 02:04:00,088
THERE'S SIX SEPARATE -- WE DID

3443
02:04:00,088 --> 02:04:00,755
HAVE A PRESENTATION AT THIS

3444
02:04:00,755 --> 02:04:03,157
BOARD BY OUR CMO BACK IN

3445
02:04:03,157 --> 02:04:04,125
FEBRUARY, I BELIEVE IT WAS, ON

3446
02:04:04,125 --> 02:04:05,660
SOME OF THE DATA THAT WE WERE

3447
02:04:05,660 --> 02:04:09,597
LOOKING AT.

3448
02:04:09,597 --> 02:04:11,099
SO JUST TO LOOK AT SOME OF THOSE

3449
02:04:11,099 --> 02:04:12,233
MOCK SURVEY FINDINGS AND WHAT WE

3450
02:04:12,233 --> 02:04:13,935
WERE WORKING ON AND DO NEED TO

3451
02:04:13,935 --> 02:04:15,903
WORK ON, SAID WE NEED TO WORK ON

3452
02:04:15,903 --> 02:04:18,739
WHETHER THE JOINT COMMISSION

3453
02:04:18,739 --> 02:04:19,841
NOTICED THEM OR NOT.

3454
02:04:19,841 --> 02:04:21,609
AS I SAID, IT'S AB ONGOING

3455
02:04:21,609 --> 02:04:22,543
JOURNEY WITH THE STERILE

3456
02:04:22,543 --> 02:04:23,111
INSTRUMENTS.

3457
02:04:23,111 --> 02:04:25,179
WE HAVE TREMENDOUS CHANGES,

3458
02:04:25,179 --> 02:04:26,380
TREMENDOUS IMPROVEMENTS SINCE

3459
02:04:26,380 --> 02:04:28,216
2021, BUT REALLY JUST

3460
02:04:28,216 --> 02:04:29,550
MAINTAINING THAT, MAKING SURE

3461
02:04:29,550 --> 02:04:34,088
THAT THE MANAGEMENT OF THE ITEMS

3462
02:04:34,088 --> 02:04:37,625
ON THE FLOOR, ONLY STUFF THAT'S

3463
02:04:37,625 --> 02:04:39,360
NOT EXPIRED AND APPROPRIATE FOR

3464
02:04:39,360 --> 02:04:41,028
USE WINDS UP ON THE FLOOR, AND

3465
02:04:41,028 --> 02:04:42,330
AS I MENTIONED, THERE WAS AN

3466
02:04:42,330 --> 02:04:43,364
UPDATED TRAINING THAT'S NOW PART

3467
02:04:43,364 --> 02:04:47,135
OF OUR ANNUAL TRAINING PRACTICE.

3468
02:04:47,135 --> 02:04:51,739
THE STERILE PROCESSING

3469
02:04:51,739 --> 02:04:52,874
DEPARTMENT HAS A BRAND NEW SPACE

3470
02:04:52,874 --> 02:04:53,774
AND THAT'S JUST HAPPENED OVER

3471
02:04:53,774 --> 02:04:55,209
THE PAST FEW MONTHS INCLUDING

3472
02:04:55,209 --> 02:04:57,478
SOME NEW EQUIPMENT.

3473
02:04:57,478 --> 02:04:58,446
THIS HAS TO DO WITH THE WORK

3474
02:04:58,446 --> 02:04:59,847
SPACE OF THE PEOPLE THAT ARE

3475
02:04:59,847 --> 02:05:00,648
INSPECTING INSTRUMENTS, THE

3476
02:05:00,648 --> 02:05:02,450
LIGHTING THAT THEY HAVE, THE

3477
02:05:02,450 --> 02:05:04,886
TYPES OF MAGNIFICATION THEY

3478
02:05:04,886 --> 02:05:07,288
HAVE, CERTAIN THINGS LIKE A

3479
02:05:07,288 --> 02:05:08,456
BOROSCOPE THAT ALLOWS EVEN A

3480
02:05:08,456 --> 02:05:11,025
BETTER LOOK INSIDE OF

3481
02:05:11,025 --> 02:05:11,726
INSTRUMENTS, SO REALLY A TOTAL

3482
02:05:11,726 --> 02:05:12,760
CHANGE OF THEIR PRACTICE THAT IS

3483
02:05:12,760 --> 02:05:13,794
GOING TO MAKE GREAT

3484
02:05:13,794 --> 02:05:14,328
IMPROVEMENTS.

3485
02:05:14,328 --> 02:05:15,062
AND THEN SOME OF THE OTHER

3486
02:05:15,062 --> 02:05:20,501
THINGS THAT WE HAD NOTICED

3487
02:05:20,501 --> 02:05:22,036
WEREN'T 100% CONSISTENT, SO HOW

3488
02:05:22,036 --> 02:05:23,137
WE DOCUMENT CERTAIN HOME

3489
02:05:23,137 --> 02:05:23,738
MEDICATION MANAGEMENT.

3490
02:05:23,738 --> 02:05:24,839
ONE OF THE THINGS THAT WAS FOUND

3491
02:05:24,839 --> 02:05:26,841
ON THE MOCK SURVEY WAS THAT EVEN

3492
02:05:26,841 --> 02:05:28,376
THOUGH THE ROOMS MIGHT LOOK

3493
02:05:28,376 --> 02:05:31,879
CLEAN, THERE WERE CERTAIN

3494
02:05:31,879 --> 02:05:33,848
CONSULTANTS CALLED HARD TO REACH

3495
02:05:33,848 --> 02:05:35,483
OR HARD TO SEE AREAS, SO THE

3496
02:05:35,483 --> 02:05:37,318
TOPS OF CERTAIN CABINS,

3497
02:05:37,318 --> 02:05:38,519
ESPECIALLY THOSE THAT HAVE LIPS

3498
02:05:38,519 --> 02:05:41,022
THAT YOU HAVE TO KIND OF GO OVER

3499
02:05:41,022 --> 02:05:42,256
AND MAKE SURE THOSE THINGS ARE

3500
02:05:42,256 --> 02:05:43,558
BEING CLEANED AND DUSTED WELL.

3501
02:05:43,558 --> 02:05:44,759
WE WERE IN THE PROCESS OF

3502
02:05:44,759 --> 02:05:46,160
UPDATING FOR OUR PATIENTS OUR

3503
02:05:46,160 --> 02:05:48,129
SUICIDE SCREENING, AND THAT'S --

3504
02:05:48,129 --> 02:05:49,664
THIS GOES BACK TO A YEAR AGO

3505
02:05:49,664 --> 02:05:51,532
NOW, SO THAT'S NOW SINCE BEEN

3506
02:05:51,532 --> 02:05:54,235
UPDATED, AND AS I MENTIONED,

3507
02:05:54,235 --> 02:05:55,770
THOSE NEW REQUIREMENTS THAT I

3508
02:05:55,770 --> 02:05:57,738
MENTIONED ON THE PRIOR SLIDE.

3509
02:05:57,738 --> 02:05:59,807
AND THEN WE DID OUR INTERNAL

3510
02:05:59,807 --> 02:06:03,477
MOCK SURVEY IN 2024, AND SOME OF

3511
02:06:03,477 --> 02:06:04,946
THE THINGS WE NOTICED AGAIN WERE

3512
02:06:04,946 --> 02:06:06,047
IN THAT ENVIRONMENT, THINGS GET

3513
02:06:06,047 --> 02:06:07,348
VERY DIFFICULT WITH LIMITED

3514
02:06:07,348 --> 02:06:09,650
SPACE, AND PEOPLE WILL SEE A

3515
02:06:09,650 --> 02:06:12,186
ROOM THAT DOESN'T SEEM TO HAVE A

3516
02:06:12,186 --> 02:06:13,821
LOT OF STUFF, WHERE DO I PUT

3517
02:06:13,821 --> 02:06:14,889
THIS, I'LL JUST PUT THIS THERE,

3518
02:06:14,889 --> 02:06:16,924
WE WANT TO BE CAREFUL AND BE

3519
02:06:16,924 --> 02:06:18,793
SURE THAT CLEANED ITEMS ARE

3520
02:06:18,793 --> 02:06:20,294
LABELED AS SUCH AND HOW WOULD I

3521
02:06:20,294 --> 02:06:21,529
KNOW THAT IF I LOOK AT THIS,

3522
02:06:21,529 --> 02:06:23,064
IT'S READY TO GO, VERSUS USED

3523
02:06:23,064 --> 02:06:25,166
ITEMS ARE SOMEWHERE ELSE AND HOW

3524
02:06:25,166 --> 02:06:27,134
DO I LOOK AT THIS AND KNOW IT'S

3525
02:06:27,134 --> 02:06:29,103
NOT READY TO GO, MAKING SURE

3526
02:06:29,103 --> 02:06:31,205
THAT EXPIRED THINGS ARE A WAY --

3527
02:06:31,205 --> 02:06:33,374
REALLY A LOT OF -- IN SOME WAYS

3528
02:06:33,374 --> 02:06:34,675
VERY SPECIFIC THINGS.

3529
02:06:34,675 --> 02:06:36,644
I WON'T SAY NITPICKY BUT VERY

3530
02:06:36,644 --> 02:06:37,345
SPECIFIC THINGS.

3531
02:06:37,345 --> 02:06:39,046
AS I MENTIONED PART OF OUR MOCK

3532
02:06:39,046 --> 02:06:42,984
SURVEY THAT WAS INTERNAL WAS HOW

3533
02:06:42,984 --> 02:06:44,318
ARE OUR SIT DOWN SESSIONS GOING

3534
02:06:44,318 --> 02:06:45,987
TO GO, HOW CAN WE ENSURE THAT WE

3535
02:06:45,987 --> 02:06:48,122
ARE BOTH DOING PROCESS

3536
02:06:48,122 --> 02:06:49,423
IMPROVEMENT PROJECTS BUT ALSO

3537
02:06:49,423 --> 02:06:50,424
ARTICULATING THEM AND THAT OUR

3538
02:06:50,424 --> 02:06:54,662
STAFF CAN ARTICULATE THEM.

3539
02:06:54,662 --> 02:06:55,429
SO THAT WAS PART OF OUR

3540
02:06:55,429 --> 02:06:55,863
PREPARATION.

3541
02:06:55,863 --> 02:06:59,900
THEN FINALLY THE JOINT

3542
02:06:59,900 --> 02:07:01,102
COMMISSION DID IN FACT ARRIVE A

3543
02:07:01,102 --> 02:07:02,570
LITTLE EARLIER THAN EXPECTED BUT

3544
02:07:02,570 --> 02:07:04,805
THAT WAS APRIL 9TH THROUGH 11TH.

3545
02:07:04,805 --> 02:07:06,107
THEY SENT A PHYSICIAN, A NURSE

3546
02:07:06,107 --> 02:07:08,075
AND A LIFE SAFETY EXPERT.

3547
02:07:08,075 --> 02:07:10,411
THE PHYSICIAN AND NURSE COMBINED

3548
02:07:10,411 --> 02:07:11,846
TO GO TO ALMOST ALL OF THE

3549
02:07:11,846 --> 02:07:13,314
CLINICAL LOCATIONS THROUGHOUT

3550
02:07:13,314 --> 02:07:15,082
THE HOSPITAL AND THE LIFE SAFETY

3551
02:07:15,082 --> 02:07:16,617
ENGINEER LOOKED AGAIN FOR

3552
02:07:16,617 --> 02:07:18,252
ENVIRONMENTAL LIFE SAFETY THINGS

3553
02:07:18,252 --> 02:07:20,755
REALLY EVERYWHERE.

3554
02:07:20,755 --> 02:07:22,623
SOMETIMES LIKE WOW, HE REALLY

3555
02:07:22,623 --> 02:07:24,592
DID GO EVERYWHERE AND WE'LL SEE.

3556
02:07:24,592 --> 02:07:26,327
AS IS THE JOINT COMMISSION'S

3557
02:07:26,327 --> 02:07:30,031
PRACTICE, THERE WAS SIT-DOWN

3558
02:07:30,031 --> 02:07:31,299
SESSIONS, THEY HAVE A NEW WAY OF

3559
02:07:31,299 --> 02:07:33,234
DOING IT CALLED THE ORGANIZATION

3560
02:07:33,234 --> 02:07:35,069
QUALITY AND PERFORMANCE

3561
02:07:35,069 --> 02:07:35,703
IMPROVEMENT SESSION WHERE THEY

3562
02:07:35,703 --> 02:07:38,105
ASK YOU WHAT KIND OF DATA TO WE

3563
02:07:38,105 --> 02:07:39,440
FOLLOW, HOW DO WE ENSURE THE

3564
02:07:39,440 --> 02:07:41,809
ORGANIZATION IS MEETING OUR

3565
02:07:41,809 --> 02:07:44,879
QUALITY GOALS, DISCUSSION WITH

3566
02:07:44,879 --> 02:07:47,248
LEADERSHIP ABOUT THE HOSPITAL

3567
02:07:47,248 --> 02:07:49,784
AND THE CULTURE, REALLY THE

3568
02:07:49,784 --> 02:07:51,819
CULTURE OF PATIENT SAFETY, AND

3569
02:07:51,819 --> 02:07:52,420
COMPETENCY AND EMERGENCY

3570
02:07:52,420 --> 02:07:52,920
MANAGEMENT.

3571
02:07:52,920 --> 02:07:54,355
SO THIS IS WHAT THEY CALL THE

3572
02:07:54,355 --> 02:07:57,825
SAFER MATRIX, WHERE YOU CAN SEE

3573
02:07:57,825 --> 02:07:58,726
THESE ARE THE STANDARDS FOR

3574
02:07:58,726 --> 02:08:01,228
WHICH THERE WAS AN OBSERVATION

3575
02:08:01,228 --> 02:08:04,298
THAT THEY SAID ONE OBSERVATION,

3576
02:08:04,298 --> 02:08:05,399
THIS DIDN'T MEET THE STANDARD.

3577
02:08:05,399 --> 02:08:08,235
SO THERE WERE 18 STANDARDS WITH

3578
02:08:08,235 --> 02:08:09,303
22 INDIVIDUAL OBSERVATIONS THAT

3579
02:08:09,303 --> 02:08:11,105
WERE FOUND, AND FOR THOSE WHO

3580
02:08:11,105 --> 02:08:13,140
AREN'T AS FAMILIAR WITH THIS, AS

3581
02:08:13,140 --> 02:08:16,444
YOU GET HIGHER UP ON THE

3582
02:08:16,444 --> 02:08:17,411
VERTICAL HERE, AS YOU GET TO THE

3583
02:08:17,411 --> 02:08:19,480
RED OR THE KETCHUP, THOSE ARE

3584
02:08:19,480 --> 02:08:22,016
CONSIDERED HIGH.

3585
02:08:22,016 --> 02:08:23,417
WE HAVE NONE IN THE INTIMATE

3586
02:08:23,417 --> 02:08:25,186
THREAT TO HEALTH OR SAFETY WHICH

3587
02:08:25,186 --> 02:08:28,723
IS SORT OF THE DEEP RED, SIRI

3588
02:08:28,723 --> 02:08:30,524
THERE, REALLY RELATIVELY FEW IN

3589
02:08:30,524 --> 02:08:32,360
THE HIGH, OVER TO THE LEFT TO

3590
02:08:32,360 --> 02:08:32,927
SOMETHING THAT'S MORE

3591
02:08:32,927 --> 02:08:33,461
WIDESPREAD.

3592
02:08:33,461 --> 02:08:34,595
SO I'M GOING TO GO OVER JUST

3593
02:08:34,595 --> 02:08:36,097
SOME OF THE CLINICAL ONES AND

3594
02:08:36,097 --> 02:08:37,098
THE HIGHER ONES.

3595
02:08:37,098 --> 02:08:38,299
I WILL SAY THAT ALTHOUGH

3596
02:08:38,299 --> 02:08:39,300
OBVIOUSLY CONCERNING TO HAVE

3597
02:08:39,300 --> 02:08:40,801
ANYTHING IN THOSE, THESE WERE

3598
02:08:40,801 --> 02:08:45,005
VERY TARGETED AND SPECIFIC ONES

3599
02:08:45,005 --> 02:08:46,374
THAT WE'VE ALREADY ADDRESSED.

3600
02:08:46,374 --> 02:08:48,042
WE'LL SEE THERE'S A LOT

3601
02:08:48,042 --> 02:08:49,009
RELATIVELY OF THE PROPORTION

3602
02:08:49,009 --> 02:08:51,078
SEEN, MANY OF THEM ARE IN THE EC

3603
02:08:51,078 --> 02:08:55,583
OR LS, WHICH IS ENVIRONMENT CURE

3604
02:08:55,583 --> 02:08:57,418
OR LIFE SAFETY CHAPTER.

3605
02:08:57,418 --> 02:09:00,321
THESE ARE EVERYTHING FROM A DOOR

3606
02:09:00,321 --> 02:09:01,689
THAT'S SUPPOSED TO BE

3607
02:09:01,689 --> 02:09:03,424
SELF-LOCKING NOT BEING

3608
02:09:03,424 --> 02:09:04,625
SELF-LATCHING AND THAT GOT FIXED

3609
02:09:04,625 --> 02:09:06,394
ON SITE, OR DUE TO CERTAIN

3610
02:09:06,394 --> 02:09:07,828
CONSTRUCTION THAT WAS GOING ON,

3611
02:09:07,828 --> 02:09:11,098
SOMEBODY PUT A BOX IN FRONT OF A

3612
02:09:11,098 --> 02:09:12,433
FIRE EXTINGUISHER AND THAT'S

3613
02:09:12,433 --> 02:09:13,501
OBVIOUSLY NOT GOOD, SO MAKING

3614
02:09:13,501 --> 02:09:17,438
SURE THAT THAT'S TAKEN CARE.

3615
02:09:17,438 --> 02:09:18,873
AND CERTAIN THINGS THAT WE ARE

3616
02:09:18,873 --> 02:09:21,375
TRYING TO ADDRESS WITH OUR

3617
02:09:21,375 --> 02:09:22,176
HOUSEHOLD PARTNERS.

3618
02:09:22,176 --> 02:09:23,444
THERE ARE SOME OFFICES AND CALL

3619
02:09:23,444 --> 02:09:24,745
ROOMS THAT ARE EITHER ON PATIENT

3620
02:09:24,745 --> 02:09:26,313
CARE UNITS OR ADJACENT TO

3621
02:09:26,313 --> 02:09:28,015
PATIENT CARE UNITS, AND BEING AS

3622
02:09:28,015 --> 02:09:29,817
SUCH EVEN THOUGH THEY MIGHT BE

3623
02:09:29,817 --> 02:09:30,885
SOMEBODY'S OFFICE, PAUSE OF

3624
02:09:30,885 --> 02:09:35,222
WHERE BECAUSE OFWHERE IT IS, ITE

3625
02:09:35,222 --> 02:09:36,090
HEALTHCARE SAFETY CODES THAT ARE

3626
02:09:36,090 --> 02:09:39,126
A LITTLE MORE STRINGENT AS FAR

3627
02:09:39,126 --> 02:09:40,494
AS FIRE PREVENTION AND THINGS

3628
02:09:40,494 --> 02:09:41,128
LIKE THAT.

3629
02:09:41,128 --> 02:09:44,432
SO WE'VE CLARIFIED -- YOU CAN'T

3630
02:09:44,432 --> 02:09:47,735
BRING THAT EXTENSION CORD IN FOR

3631
02:09:47,735 --> 02:09:49,670
YOUR -- YOU CAN'T HAVE THESE

3632
02:09:49,670 --> 02:09:50,738
TYPES OF THINGS OR WHAT CAN YOU

3633
02:09:50,738 --> 02:09:52,440
HAVE IN THOSE TYPES OF ROOMS.

3634
02:09:52,440 --> 02:09:53,841
THAT'S ACTUALLY AN

3635
02:09:53,841 --> 02:09:54,842
ADMINISTRATIVE POLICY THAT'S

3636
02:09:54,842 --> 02:09:56,110
BEEN UPDATED AND CLARIFIED AND

3637
02:09:56,110 --> 02:09:57,745
WE'LL HAVE TO BE SURE THAT THAT

3638
02:09:57,745 --> 02:09:59,413
IS GOING -- IT'S ONE OF THOSE

3639
02:09:59,413 --> 02:10:00,548
THINGS THAT REQUIRES CONTINUOUS

3640
02:10:00,548 --> 02:10:04,685
MOMONITORING BECAUSE THAT MIGHTE

3641
02:10:04,685 --> 02:10:06,420
SOMEBODY'S OFFICE WHO MIGHT NOT

3642
02:10:06,420 --> 02:10:07,755
BE THINKING MUCH ABOUT THIS,

3643
02:10:07,755 --> 02:10:08,923
CAN'T I JUST BRING THIS IN, SO

3644
02:10:08,923 --> 02:10:09,890
WE'LL HAVE TO LOOK AT THAT.

3645
02:10:09,890 --> 02:10:11,759
ON THE NEXT SLIDE, I'LL GO INTO

3646
02:10:11,759 --> 02:10:13,194
SOME OF THE HIGHER ON THE

3647
02:10:13,194 --> 02:10:14,829
CLINICAL ONES.

3648
02:10:14,829 --> 02:10:16,997
IN THE DATA AND PROCESS

3649
02:10:16,997 --> 02:10:18,132
IMPROVEMENT, I TALKED A LITTLE

3650
02:10:18,132 --> 02:10:20,668
ABOUT THIS BEFORE, THESE ARE THE

3651
02:10:20,668 --> 02:10:21,802
TYPES OF THINGS THEY ASKED US TO

3652
02:10:21,802 --> 02:10:23,804
SHARE WHAT OUR PRIORITIES ARE,

3653
02:10:23,804 --> 02:10:25,940
WHAT OUR PI PROJECTS ARE, TALK

3654
02:10:25,940 --> 02:10:27,475
ABOUT THE CULTURE OF SAFETY, AND

3655
02:10:27,475 --> 02:10:30,110
WE SHARED WITH THEM SOME OF OUR

3656
02:10:30,110 --> 02:10:32,079
IMPROVEMENT PROJECTS AND ONGOING

3657
02:10:32,079 --> 02:10:34,482
MONITORING OF THINGS LIKE FALLS,

3658
02:10:34,482 --> 02:10:36,817
INFECTION CONTROL, MEDICATION

3659
02:10:36,817 --> 02:10:37,985
MANAGEMENT, SURGICAL STATISTICS.

3660
02:10:37,985 --> 02:10:40,521
A LOT OF IT IS THE DATA THAT WE

3661
02:10:40,521 --> 02:10:42,490
PROVIDE THE BOARD EVERY QUARTER,

3662
02:10:42,490 --> 02:10:44,325
AND THAT GETS POSTED PUBLICLY ON

3663
02:10:44,325 --> 02:10:46,794
OUR WEBSITE EVERY QUARTER.

3664
02:10:46,794 --> 02:10:47,962
ONE, WE WERE VERY PROUD OF --

3665
02:10:47,962 --> 02:10:49,263
AND I THINK IT WAS ALSO

3666
02:10:49,263 --> 02:10:52,566
PREVIOUSLY PRESENTED HERE, OF

3667
02:10:52,566 --> 02:10:53,734
HOW ONE OF THE PEDIATRIC

3668
02:10:53,734 --> 02:10:55,269
BEHAVIORAL HEALTH UNITS REALLY

3669
02:10:55,269 --> 02:10:56,470
CHANGED THE PATIENT POPULATION

3670
02:10:56,470 --> 02:11:01,075
THAT THEY WERE SEEING WITH DR

3671
02:11:01,075 --> 02:11:03,577
DR. GINA MOONINGHAM AND HOW

3672
02:11:03,577 --> 02:11:06,146
BEFORE THAT HAPPENED, ALL THE

3673
02:11:06,146 --> 02:11:07,414
EVALUATION THAT WENT IN TO

3674
02:11:07,414 --> 02:11:09,383
IMPLEMENT THAT.

3675
02:11:09,383 --> 02:11:10,718
AND THEN THEY SHARED THESE

3676
02:11:10,718 --> 02:11:13,988
GENERAL OBSERVATIONS, VERY PROUD

3677
02:11:13,988 --> 02:11:16,991
AT THE END THEY HAD A CLOSEOUT

3678
02:11:16,991 --> 02:11:17,625
MEETING, THEY SAID WE'RE VERY

3679
02:11:17,625 --> 02:11:19,894
IMPRESSED WITH THE HOSPITAL AND

3680
02:11:19,894 --> 02:11:22,963
THE STAFF, THEY FELT INSPIRED BY

3681
02:11:22,963 --> 02:11:23,964
THE MISSION.

3682
02:11:23,964 --> 02:11:25,165
SOMEBODY SAID IT WAS THE

3683
02:11:25,165 --> 02:11:26,500
CLEANEST KITCHEN I HAVE EVER

3684
02:11:26,500 --> 02:11:28,002
SEEN, SO I WANTED TO HYPE THAT

3685
02:11:28,002 --> 02:11:29,236
FOR OUR NUTRITION STAFF.

3686
02:11:29,236 --> 02:11:31,071
AND EVEN WHEN THERE WAS A

3687
02:11:31,071 --> 02:11:32,439
PATIENT, AS YOU KNOW, ALL OF OUR

3688
02:11:32,439 --> 02:11:34,041
PATIENTS ARE GOING TO BE

3689
02:11:34,041 --> 02:11:34,708
COMPLICATED, SOME HAVE TO BE

3690
02:11:34,708 --> 02:11:35,876
TRANSFERRED TO ANOTHER HOSPITAL

3691
02:11:35,876 --> 02:11:37,077
AND THEY FOUND BASED ON THE

3692
02:11:37,077 --> 02:11:38,579
RECORD, IT WAS VERY IMPRESSIVE

3693
02:11:38,579 --> 02:11:39,613
HOW THAT WENT.

3694
02:11:39,613 --> 02:11:40,948
OVERALL, STAFF WAS VERY WELL

3695
02:11:40,948 --> 02:11:41,248
ENGAGED.

3696
02:11:41,248 --> 02:11:42,650
I SAW THIS MYSELF WHEN I WENT

3697
02:11:42,650 --> 02:11:45,185
WITH SOME OF THE -- WHEN I WENT

3698
02:11:45,185 --> 02:11:47,154
WITH ONE OF THE SURVEYORS, HOW

3699
02:11:47,154 --> 02:11:48,455
ENGAGED AND REALLY THE STAFF

3700
02:11:48,455 --> 02:11:49,990
WERE VERY WELL PREPARED TO SPEAK

3701
02:11:49,990 --> 02:11:51,425
ABOUT THEIR UNIT.

3702
02:11:51,425 --> 02:11:53,894
AND REALLY WERE ABLE TO SHOW OFF

3703
02:11:53,894 --> 02:11:55,229
THE EXCELLENT CARE BUT ALSO THE

3704
02:11:55,229 --> 02:11:58,332
TEAM WORK THAT WE HAD.

3705
02:11:58,332 --> 02:12:00,367
SO I WAS MYSELF MOST GRATIFIED

3706
02:12:00,367 --> 02:12:02,870
BY THE MULTI-DISCIPLINARY

3707
02:12:02,870 --> 02:12:03,671
COLLABORATION THAT WAS REALLY ON

3708
02:12:03,671 --> 02:12:04,672
DISPLAY ALL THE WAY AROUND.

3709
02:12:04,672 --> 02:12:06,507
SO ONE OF THE THINGS WE HAD TO

3710
02:12:06,507 --> 02:12:09,810
DO WAS PROVIDE TO THEM A

3711
02:12:09,810 --> 02:12:11,111
RESPONSE TO EACH OF THOSE ITEMS.

3712
02:12:11,111 --> 02:12:12,079
AGAIN I'M NOT GOING TO GO

3713
02:12:12,079 --> 02:12:13,480
THROUGH EVERY SINGLE ONE OF THEM

3714
02:12:13,480 --> 02:12:14,248
BUT SOME OF THE HIGHER LEVEL

3715
02:12:14,248 --> 02:12:14,515
ONES.

3716
02:12:14,515 --> 02:12:16,750
IN THE MEDICATION MANAGEMENT,

3717
02:12:16,750 --> 02:12:18,519
ONE WAS AN EXPIRED VIAL OF

3718
02:12:18,519 --> 02:12:21,088
CONTRAST THAT WAS FOUND SORRY

3719
02:12:21,088 --> 02:12:23,657
ABOUT THAT TYPO IN A CABINET.

3720
02:12:23,657 --> 02:12:25,593
AND BASICALLY THIS WAS SOMETHING

3721
02:12:25,593 --> 02:12:26,827
THAT WAS EASY TO FIX BECAUSE IT

3722
02:12:26,827 --> 02:12:27,995
WAS SOMETHING THAT WAS BEING

3723
02:12:27,995 --> 02:12:30,864
STORED OUTSIDE OF THE OMNICELL,

3724
02:12:30,864 --> 02:12:32,399
THE AUTOMATIC DISPENSING

3725
02:12:32,399 --> 02:12:33,934
CABINET, SO WHAT WE SAID WAS

3726
02:12:33,934 --> 02:12:34,602
UNLESS THERE'S A COMPELLING

3727
02:12:34,602 --> 02:12:35,903
REASON FOR THIS TO BE OUTSIDE OF

3728
02:12:35,903 --> 02:12:37,605
THE CABINET, THEN IT SHOULD BE

3729
02:12:37,605 --> 02:12:39,506
IN THE CABINET, AND FOR THINGS

3730
02:12:39,506 --> 02:12:42,042
FOR WHICH THERE IS A COMPELLING

3731
02:12:42,042 --> 02:12:43,444
REASON, FOR EXAMPLE, CERTAIN

3732
02:12:43,444 --> 02:12:45,012
EMERGENCY CARTS OR EMERGENCY

3733
02:12:45,012 --> 02:12:47,982
BOXES, THOSE NEED TO HAVE A

3734
02:12:47,982 --> 02:12:49,016
SPECIFIC LOG CHECKS.

3735
02:12:49,016 --> 02:12:50,884
SO THIS WAS -- THEY HAVE TO DO

3736
02:12:50,884 --> 02:12:52,920
WITH A TYPE OF CONTRAST, IT SORT

3737
02:12:52,920 --> 02:12:54,955
OF FELL OUTSIDE OF ALL OF THOSE,

3738
02:12:54,955 --> 02:12:57,791
AND IT WAS JUST MORE --

3739
02:12:57,791 --> 02:12:59,793
HISTORICALLY IT HAD BEEN STORED

3740
02:12:59,793 --> 02:13:01,195
IN A CABINET, SO NOW IT'S BACK

3741
02:13:01,195 --> 02:13:03,731
IN THE OMNI CELL SO THAT WON'T

3742
02:13:03,731 --> 02:13:05,432
BE A CONCERN ANYMORE, SO ONCE

3743
02:13:05,432 --> 02:13:07,134
IT'S THERE, IT'S PART OF THE

3744
02:13:07,134 --> 02:13:07,768
PHARMACY INVENTORY MANAGEMENT

3745
02:13:07,768 --> 02:13:09,103
AND ROTATION, AND AGAIN WE JUST

3746
02:13:09,103 --> 02:13:10,771
DOUBLED DOWN ON ENSURING

3747
02:13:10,771 --> 02:13:12,206
EVERYWHERE THAT THERE'S A

3748
02:13:12,206 --> 02:13:13,574
MEDICATION, THAT FOR WHICH THERE

3749
02:13:13,574 --> 02:13:15,709
IS A COMPELLING REASON NOT TO BE

3750
02:13:15,709 --> 02:13:19,380
IN THE OMNICELL TO MAKE SURE

3751
02:13:19,380 --> 02:13:26,286
THOSE ARE LOGGED AND CHECKED, SO

3752
02:13:26,286 --> 02:13:28,722
THE SECOND ONE GOT HIGHLY

3753
02:13:28,722 --> 02:13:29,923
TECHNICAL, SO WE'RE FORTUNATE TO

3754
02:13:29,923 --> 02:13:31,191
HAVE ENGINEERS BOTH ON THE BOARD

3755
02:13:31,191 --> 02:13:33,293
AND EVEN IN THE LEADERSHIP, BUT

3756
02:13:33,293 --> 02:13:34,895
THIS REQUIRED SOME WORK WITH OUR

3757
02:13:34,895 --> 02:13:37,898
NEW CHIEF OF PHARMACY,

3758
02:13:37,898 --> 02:13:39,767
DR. GABRIEL, AND OUR FACILITIES

3759
02:13:39,767 --> 02:13:43,303
FOLKS UNDER DAN WHEELAND, I

3760
02:13:43,303 --> 02:13:44,304
WON'T GO THROUGH ALL OF THE

3761
02:13:44,304 --> 02:13:45,706
DETAILS BUT WHAT THIS GETS TO IS

3762
02:13:45,706 --> 02:13:47,675
THAT FOR A PHARMACY ROOM WHERE

3763
02:13:47,675 --> 02:13:49,443
THEY'RE PROVIDING HAZARDOUS AND

3764
02:13:49,443 --> 02:13:50,778
STERILE -- SO MEDICATION THAT'S

3765
02:13:50,778 --> 02:13:53,147
BOTH HAZARDOUS AND STERILE, THE

3766
02:13:53,147 --> 02:13:55,916
AIR PRESSURE ALLOWABLE RANGE OF

3767
02:13:55,916 --> 02:13:58,452
THE PURE PRESSURE DIFFERENTIALS

3768
02:13:58,452 --> 02:13:59,987
IS VERY NARROW BECAUSE WE DON'T

3769
02:13:59,987 --> 02:14:01,722
WANT BAD STUFF GETTING OUT AND

3770
02:14:01,722 --> 02:14:02,589
POTENTIALLY HARMING OTHER

3771
02:14:02,589 --> 02:14:04,692
PEOPLE, BUT IF IT'S STERILE, WE

3772
02:14:04,692 --> 02:14:06,126
DON'T WANT ANYTHING GETTING IN

3773
02:14:06,126 --> 02:14:09,196
THAT CAN POTENTIALLY CONTAMINATE

3774
02:14:09,196 --> 02:14:11,498
THE MEDICATION.

3775
02:14:11,498 --> 02:14:15,069
SO THE USP800 HAS A VERY NARROW

3776
02:14:15,069 --> 02:14:15,703
RANGE.

3777
02:14:15,703 --> 02:14:19,440
IN OUR EXUR CURRENT FACILITY, IS

3778
02:14:19,440 --> 02:14:20,607
NOT 100% POSSIBLE TO MAKE SURE

3779
02:14:20,607 --> 02:14:21,975
THAT'S MET ALL THE TIME HOWEVER,

3780
02:14:21,975 --> 02:14:22,843
WE HAVE OTHER CONTROLS IN PLACE

3781
02:14:22,843 --> 02:14:26,413
THAT DO MEET THE GUIDELINES IN

3782
02:14:26,413 --> 02:14:27,614
USP800 THAT AS LONG AS THERE ARE

3783
02:14:27,614 --> 02:14:28,015
OTHER CONTROLS.

3784
02:14:28,015 --> 02:14:30,150
ONE, WE HAVE A MORE COMPLEX

3785
02:14:30,150 --> 02:14:32,619
SYSTEM SO BEFORE IT ARE GETS TO

3786
02:14:32,619 --> 02:14:34,154
THE MORE GENERAL PUBLIC, THERE'S

3787
02:14:34,154 --> 02:14:38,492
ANOTHER TYPE OF ROOM AND THAT,

3788
02:14:38,492 --> 02:14:40,027
BECAUSE OF HOW THAT'S

3789
02:14:40,027 --> 02:14:43,630
PRESSURIZED, THAT WOULD KEEP OUT

3790
02:14:43,630 --> 02:14:45,332
ANYTHING ANY FURTHER BUT ALSO

3791
02:14:45,332 --> 02:14:46,366
PREVENT ANYTHING FROM GETTING IN

3792
02:14:46,366 --> 02:14:47,067
FROM THE OUTSIDE.

3793
02:14:47,067 --> 02:14:48,302
SO ALL TOLD, IT WAS DETERMINED

3794
02:14:48,302 --> 02:14:49,837
THAT WE HAVE CONTROLS IN PLACE,

3795
02:14:49,837 --> 02:14:52,339
THE OTHER THING IS HOW WE USED

3796
02:14:52,339 --> 02:14:54,908
TO BE ON USE DAY CONSIDERATIONS,

3797
02:14:54,908 --> 02:14:56,543
AGAIN TO MITIGATE THE POTENTIAL

3798
02:14:56,543 --> 02:14:58,078
IMPACT ON THE PRODUCTS.

3799
02:14:58,078 --> 02:15:00,581
SO AGAIN, THE BOTTOM LINE IS

3800
02:15:00,581 --> 02:15:02,683
THAT WE'RE CONFIDENT THAT THE

3801
02:15:02,683 --> 02:15:04,151
PRODUCTS ARE MAINTAINING THE

3802
02:15:04,151 --> 02:15:06,086
APPROPRIATE LEVEL OF STERILITY

3803
02:15:06,086 --> 02:15:08,589
THAT THE SAFETY TO STAFF HAS

3804
02:15:08,589 --> 02:15:10,157
ALSO BEEN MAINTAINED, AND THEN

3805
02:15:10,157 --> 02:15:12,826
IN THE PI V ALL.

3806
02:15:12,826 --> 02:15:14,194
, THE SORT OF NEWER STANDARDS

3807
02:15:14,194 --> 02:15:17,064
WILL ALSO BE CONSIDERED, SO ALL

3808
02:15:17,064 --> 02:15:21,168
TOLD, THIS SITUATION IS UNDER

3809
02:15:21,168 --> 02:15:22,002
CONTROL.

3810
02:15:22,002 --> 02:15:24,972
AND TO SORT OF SHARE WITH ALL OF

3811
02:15:24,972 --> 02:15:26,507
THESE, THE RESPONSE WE SENT BACK

3812
02:15:26,507 --> 02:15:27,407
TO THE JOINT COMMISSION WAS DUE

3813
02:15:27,407 --> 02:15:28,809
EARLIER IN JUNE AND I JUST

3814
02:15:28,809 --> 02:15:31,245
LEARNED YESTERDAY THAT THEY HAD

3815
02:15:31,245 --> 02:15:34,414
ACCEPTED ALL OF OUR RESPONSES,

3816
02:15:34,414 --> 02:15:36,049
AND SORT OF GET TO THE PUNCH

3817
02:15:36,049 --> 02:15:37,451
LINE THAT ALL OF THOSE THINGS

3818
02:15:37,451 --> 02:15:39,419
THAT WERE LISTED ARE NOW LISTED

3819
02:15:39,419 --> 02:15:41,722
AS COMPLIANT, AND THERE ARE NO

3820
02:15:41,722 --> 02:15:43,157
OTHER -- THE JOINT COMMISSION

3821
02:15:43,157 --> 02:15:44,925
DID NOT COME BACK WITH ANY

3822
02:15:44,925 --> 02:15:46,460
FURTHER REQUEST FOR INFORMATION

3823
02:15:46,460 --> 02:15:47,327
OR IMPROVEMENT.

3824
02:15:47,327 --> 02:15:48,862
SO WE'RE IN GOOD SHAPE THERE.

3825
02:15:48,862 --> 02:15:50,631
AND THEN THE THIRD ONE HAD TO DO

3826
02:15:50,631 --> 02:15:53,033
WITH MEDICATION TITRATION

3827
02:15:53,033 --> 02:15:54,568
ORDERS, HOWL IT WAS FOLLOWED,

3828
02:15:54,568 --> 02:15:55,769
THAT'S SOMETHING THAT CLINICAL

3829
02:15:55,769 --> 02:16:00,040
CENTER NURSING DEPARTMENT AND

3830
02:16:00,040 --> 02:16:03,210
OUR -- WORKED TOGETHER TO ENSURE

3831
02:16:03,210 --> 02:16:04,444
THAT ORDERS ARE WRITTEN IN A

3832
02:16:04,444 --> 02:16:05,546
CLEAR WAY AND THAT THE PRACTICE

3833
02:16:05,546 --> 02:16:06,847
IS SUCH THAT THEY'LL BE FOLLOWED

3834
02:16:06,847 --> 02:16:10,651
APPROPRIATELY.

3835
02:16:10,651 --> 02:16:13,020
IN THE INFECTION CONTROL REALM,

3836
02:16:13,020 --> 02:16:14,855
THIS HAD TO DO WITH -- THERE'S

3837
02:16:14,855 --> 02:16:16,657
TEST STRIPS IN THE INSTRUMENT

3838
02:16:16,657 --> 02:16:18,058
WASHERS IN THE STERILE

3839
02:16:18,058 --> 02:16:20,360
PROCESSING, AND WHEN YOU SEE RED

3840
02:16:20,360 --> 02:16:21,295
SPATTERING, IT MEANS THERE'S

3841
02:16:21,295 --> 02:16:22,629
SOMETHING WRONG, YOU NEED TO FIX

3842
02:16:22,629 --> 02:16:24,064
SOME HOSES, CLEAN OUT SOME

3843
02:16:24,064 --> 02:16:26,667
HOSES, TEST IT AGAIN, AND WHEN

3844
02:16:26,667 --> 02:16:30,204
THEY'RE LILI WHITE, THEY'RE

3845
02:16:30,204 --> 02:16:31,038
FINE, AND THEN THE QUESTION IS

3846
02:16:31,038 --> 02:16:32,539
WHAT IF THERE'S LITERALLY ONE

3847
02:16:32,539 --> 02:16:33,807
SPEC OF PINK ON IT?

3848
02:16:33,807 --> 02:16:37,444
SO WE CONFERRED WITH THE

3849
02:16:37,444 --> 02:16:38,312
WASHER/VENDOR, THEY ACTUALLY

3850
02:16:38,312 --> 02:16:40,981
RECOMMENDED THAT THAT HAPPENS,

3851
02:16:40,981 --> 02:16:42,216
DEPENDING ON HOW THE STRIP IS

3852
02:16:42,216 --> 02:16:43,517
LOADED, IT CAN BE BENT A LITTLE

3853
02:16:43,517 --> 02:16:44,718
BIT, THAT SORT OF THING, SO

3854
02:16:44,718 --> 02:16:45,953
THEY'VE ADJUSTED THAT PRACTICE

3855
02:16:45,953 --> 02:16:47,721
AND ALSO MODIFIED THE PRACTICE

3856
02:16:47,721 --> 02:16:50,324
TO BE CLEAR THAT IF THERE'S

3857
02:16:50,324 --> 02:16:51,825
ANYTHING, EVEN A SINGLE SPEC,

3858
02:16:51,825 --> 02:16:52,826
THAT THEY DO THE STEPS

3859
02:16:52,826 --> 02:16:54,061
RECOMMENDED BY THE VEN, DO WHICH

3860
02:16:54,061 --> 02:16:55,262
TYPICALLY IS TO FIRST CHECK THE

3861
02:16:55,262 --> 02:16:56,663
HOSES AND THEN RE-TEST IT,

3862
02:16:56,663 --> 02:16:57,564
BECAUSE THAT USUALLY TAKES CARE

3863
02:16:57,564 --> 02:16:58,131
OF THEM.

3864
02:16:58,131 --> 02:16:59,766
AND THEN OF COURSE IF IT

3865
02:16:59,766 --> 02:17:01,802
CONTINUES TO SHOW THAT THERE'S A

3866
02:17:01,802 --> 02:17:03,170
PROBLEM, THEN YOU DID AHEAD AND

3867
02:17:03,170 --> 02:17:03,937
FIX THAT.

3868
02:17:03,937 --> 02:17:05,038
THAT PRACTICE HAS CHANGED.

3869
02:17:05,038 --> 02:17:06,940
AND THEN REHAB MEDICINE, THIS IS

3870
02:17:06,940 --> 02:17:07,908
ACTUALLY A LOWER LEVEL FINDING

3871
02:17:07,908 --> 02:17:09,543
BUT UNDER INFECTION CONTROL, IT

3872
02:17:09,543 --> 02:17:11,178
HAD TO DO WITH THAT THERE'S A

3873
02:17:11,178 --> 02:17:12,646
RULE THAT IF YOU'RE GIVING FOOD

3874
02:17:12,646 --> 02:17:17,584
TO PATIENTS THAT IT HAS TO MEET

3875
02:17:17,584 --> 02:17:18,919
CERTAIN INFECTION CONTROL

3876
02:17:18,919 --> 02:17:21,321
STANDARDS AND WHAT ABOUT IF IN

3877
02:17:21,321 --> 02:17:23,690
THERAPY, PART OF THERAPY IS TO

3878
02:17:23,690 --> 02:17:25,058
SEE IF WE SENT YOU HOME, WOULD

3879
02:17:25,058 --> 02:17:27,094
YOU BE ABLE TO MAKE YOUR OWN

3880
02:17:27,094 --> 02:17:28,829
FOOD OR IT MIGHT BE PART OF

3881
02:17:28,829 --> 02:17:30,831
MENTAL HEALTH THERAPY, SOME

3882
02:17:30,831 --> 02:17:32,900
OCCUPATIONAL THERAPY, SO FOR

3883
02:17:32,900 --> 02:17:35,002
NOW, WE'RE NOT LETTING FOLKS EAT

3884
02:17:35,002 --> 02:17:36,737
THAT BECAUSE THAT'S CONSIDERED

3885
02:17:36,737 --> 02:17:38,205
FOOD PROVIDED BY THE HOSPITAL

3886
02:17:38,205 --> 02:17:39,606
UNTIL WE CAN BE SURE THAT WILL

3887
02:17:39,606 --> 02:17:41,141
IT WOULD MEET THE SAME STANDARDS

3888
02:17:41,141 --> 02:17:42,809
OF THAT COMING OUT OF OUR

3889
02:17:42,809 --> 02:17:45,279
KITCHEN.

3890
02:17:45,279 --> 02:17:46,680
IF AND THEN THE PROVISION OF

3891
02:17:46,680 --> 02:17:47,915
CARE, THIS HAD TO DO WITH RULES

3892
02:17:47,915 --> 02:17:51,418
THAT IF A PERSON IS HAVING AN

3893
02:17:51,418 --> 02:17:54,955
OUTPATIENT PROCEDURE, IF THEY'RE

3894
02:17:54,955 --> 02:17:56,123
IN THE HOSPITAL, THE PRESUMPTION

3895
02:17:56,123 --> 02:17:57,991
IS WE'VE SEEN THEM, DOING

3896
02:17:57,991 --> 02:17:59,526
HISTORY AND PHYSICAL, WE'RE

3897
02:17:59,526 --> 02:18:01,061
DOING DAILY PROGRESS NOTES, WE

3898
02:18:01,061 --> 02:18:02,496
KNOW WHAT'S HAPPENING WITH THEM.

3899
02:18:02,496 --> 02:18:03,764
IF THEY'RE AN OUTPATIENT, EVEN

3900
02:18:03,764 --> 02:18:05,799
IF I SAW THEM LAST WEEK AND THEN

3901
02:18:05,799 --> 02:18:07,100
THEY COME IN TODAY FOR A

3902
02:18:07,100 --> 02:18:08,335
PROCEDURE, HOW DO I KNOW

3903
02:18:08,335 --> 02:18:09,236
SOMETHING DIDN'T HAPPEN IN THE

3904
02:18:09,236 --> 02:18:09,503
PAST WEEK?

3905
02:18:09,503 --> 02:18:11,371
I'M SUPPOSED TO VERIFY THAT

3906
02:18:11,371 --> 02:18:11,805
TODAY.

3907
02:18:11,805 --> 02:18:14,041
WE HAD ONE WHERE IT HAD BEEN

3908
02:18:14,041 --> 02:18:15,609
VERIFIED THE EVENING BEFORE, SO

3909
02:18:15,609 --> 02:18:16,977
AGAIN MAYBE A LITTLE NITPICKY

3910
02:18:16,977 --> 02:18:19,479
BUT TO MEET THE STANDARD, OUR

3911
02:18:19,479 --> 02:18:21,281
HOSPITAL INFORMATION MANAGEMENT

3912
02:18:21,281 --> 02:18:23,684
FOLKS ARE ENSURING ONE

3913
02:18:23,684 --> 02:18:24,985
REINFORCING THE POLICY BUT ALSO

3914
02:18:24,985 --> 02:18:26,186
THERE'S AN OPPORTUNITY TO

3915
02:18:26,186 --> 02:18:28,155
DOCUMENT THAT WE REVIEWED THE

3916
02:18:28,155 --> 02:18:29,589
H & P AND THERE'S EITHER NO

3917
02:18:29,589 --> 02:18:30,791
UPDATES OR THESE ARE THE

3918
02:18:30,791 --> 02:18:34,761
UPDATES.

3919
02:18:34,761 --> 02:18:37,331
SO JUST SOME CLOSING THOUGHTS.

3920
02:18:37,331 --> 02:18:39,099
ACCREDITATION IS A VALIDATION OF

3921
02:18:39,099 --> 02:18:42,069
OUR OUTSTANDING WORK, AND ALL

3922
02:18:42,069 --> 02:18:43,637
THE IMPROVEMENTS AND DILIGENCE

3923
02:18:43,637 --> 02:18:45,038
WERE EVIDENT IN THAT THE SURVEY

3924
02:18:45,038 --> 02:18:48,775
WAS SUCCESSFUL, BUT ALSO WE

3925
02:18:48,775 --> 02:18:50,077
RECOGNIZE FROM OUR OWN WORK AND

3926
02:18:50,077 --> 02:18:51,845
OUR OWN CONSULTANT THAT THERE'S

3927
02:18:51,845 --> 02:18:53,013
A LOT OF THINGS, IT'S REALLY

3928
02:18:53,013 --> 02:18:55,015
ABOUT A MAINTENANCE OF

3929
02:18:55,015 --> 02:18:56,116
IMPROVEMENTS, IT'S NO THE A

3930
02:18:56,116 --> 02:18:56,783
SINGLE TIME THING.

3931
02:18:56,783 --> 02:18:58,418
SO EVEN THOUGH THE SURVEY ITSELF

3932
02:18:58,418 --> 02:19:00,287
IS A SINGLE THREE-DAY PERIOD,

3933
02:19:00,287 --> 02:19:02,589
IT'S NOT MEANT TO BE A SINGLE

3934
02:19:02,589 --> 02:19:04,458
POINT IN TIME BUT AN ONGOING

3935
02:19:04,458 --> 02:19:05,592
THING, AND REALLY WE'RE NOT HERE

3936
02:19:05,592 --> 02:19:06,960
TO SAY WE PASSED A TEST, BUT

3937
02:19:06,960 --> 02:19:08,495
REALLY TO BE SURE THAT WE'RE

3938
02:19:08,495 --> 02:19:09,496
GIVING OUR PATIENTS THE NEXT

3939
02:19:09,496 --> 02:19:13,567
CARE POSSIBLE.

3940
02:19:13,567 --> 02:19:16,203
SO OUR MESSAGE IS GOING TO BE TO

3941
02:19:16,203 --> 02:19:17,170
EVERYBODY, TO THE BOARD AND TO

3942
02:19:17,170 --> 02:19:19,106
OUR STAFF AND TO OUR LEADERSHIP,

3943
02:19:19,106 --> 02:19:20,640
IS THAT IT'S NOT ABOUT OKAY,

3944
02:19:20,640 --> 02:19:22,009
WE'RE DONE, BUT WHAT ARE WE

3945
02:19:22,009 --> 02:19:25,178
GOING TO CONTINUE TO DO?

3946
02:19:25,178 --> 02:19:27,681
THAT WE HAVE CLEAR COMMUNICATION

3947
02:19:27,681 --> 02:19:29,316
DOCUMENTATION, CONTINUING THESE

3948
02:19:29,316 --> 02:19:30,183
IMPROVED PROCESSES THAT WE'VE

3949
02:19:30,183 --> 02:19:32,085
PUT IN PLACE, MAKING SURE THE

3950
02:19:32,085 --> 02:19:33,286
TRAINING AND PREPARATIONS ARE

3951
02:19:33,286 --> 02:19:35,155
ONGOING, AND PROCESS IMPROVEMENT

3952
02:19:35,155 --> 02:19:36,390
IS ONGOING AND MOST IMPORTANTLY,

3953
02:19:36,390 --> 02:19:37,891
CONTINUING OUR ENGAGEMENT AND

3954
02:19:37,891 --> 02:19:39,359
COLLABORATION.

3955
02:19:39,359 --> 02:19:40,427
WITH THAT, I THINK THAT WAS MY

3956
02:19:40,427 --> 02:19:44,898
LAST SLIDE.

3957
02:19:44,898 --> 02:19:45,766
>> GREAT.

3958
02:19:45,766 --> 02:19:49,169
QUESTIONS FOR DR. LANG?

3959
02:19:49,169 --> 02:19:50,937
>> THIS MAY NOT BE A
QUESTION

3960
02:19:50,937 --> 02:19:56,343
YOU CAN ANSWER BUT HOW DO WE

3961
02:19:56,343 --> 02:19:58,278
KNOW EVERYTHING -- THAT THERE'S

3962
02:19:58,278 --> 02:20:01,014
NOTHING THAT'S EXPIRED HERE?

3963
02:20:01,014 --> 02:20:06,420
IT'S OBVIOUS --

3964
02:20:06,420 --> 02:20:08,588
>> SO THE PHARMACY HAS AN

3965
02:20:08,588 --> 02:20:11,324
INVENTORY MANAGEMENT PROGRAM

3966
02:20:11,324 --> 02:20:13,326
THAT -- OR PROCESS.

3967
02:20:13,326 --> 02:20:16,630
SO I MEAN, HOW CAN YOU GUARANTEE

3968
02:20:16,630 --> 02:20:19,766
EVERYTHING, BUT THEY HAVE A --

3969
02:20:19,766 --> 02:20:26,306
YEAH.

3970
02:20:26,306 --> 02:20:31,111
OTHER QUESTIONS?

3971
02:20:31,111 --> 02:20:31,478
OKAY.

3972
02:20:31,478 --> 02:20:31,878
THANKS VERY MUCH.

3973
02:20:31,878 --> 02:20:40,320
>> THANK YOU VERY MUCH.

3974
02:20:40,320 --> 02:20:41,955
>> WE ARE SCHEDULED TO
TAKE A

3975
02:20:41,955 --> 02:20:44,491
BREAK AT THIS POINT, SO I WOULD

3976
02:20:44,491 --> 02:20:46,827
SAY AT 11:40, ABOUT 20 MINUTES

3977
02:20:46,827 --> 02:20:51,891
FROM NOW, WE WILL RESUME.

3978
02:20:51,891 --> 02:20:57,931
WE ARE RECOULD RECONVENING AS

3979
02:20:57,931 --> 02:20:59,832
POINT AND WE ARE GOING TO HAVE A

3980
02:20:59,832 --> 02:21:02,268
REPORT FROM JUSTIN COHEN ABOUT

3981
02:21:02,268 --> 02:21:04,137
THE REDESIGN OF THE CLINICAL

3982
02:21:04,137 --> 02:21:08,141
CENTER WEBSITE.

3983
02:21:08,141 --> 02:21:10,710
>> HELLO, I'M JUSTIN
COHEN,

3984
02:21:10,710 --> 02:21:13,746
CHIEF OF COMMUNICATIONS, MEDIA

3985
02:21:13,746 --> 02:21:14,948
RELATIONS AND PATIENT

3986
02:21:14,948 --> 02:21:16,082
RECRUITMENT AT THE CLINICAL

3987
02:21:16,082 --> 02:21:17,717
CENTER, HERE TO GIVE YOU AN

3988
02:21:17,717 --> 02:21:18,952
ADVANCED PEEK AT OUR NEW

3989
02:21:18,952 --> 02:21:19,185
WEBSITE.

3990
02:21:19,185 --> 02:21:21,154
THANK YOU FOR THE OPPORTUNITY TO

3991
02:21:21,154 --> 02:21:23,756
SHARE OUR WORK WITH ALL OF YOU.

3992
02:21:23,756 --> 02:21:27,493
AND I EMPHASIZE "OUR" BECAUSE IT

3993
02:21:27,493 --> 02:21:28,628
REALLY IS A BIG GROUP EFFORT,

3994
02:21:28,628 --> 02:21:29,796
BOTH WITHIN MY TEAM AND

3995
02:21:29,796 --> 02:21:31,030
THROUGHOUT THE CLINICAL CENTER.

3996
02:21:31,030 --> 02:21:32,999
AND SO WITH THAT, I ALSO WANT TO

3997
02:21:32,999 --> 02:21:34,968
HIGHLIGHT THAT IN THE ROOM IS MY

3998
02:21:34,968 --> 02:21:37,804
DEPUTY, DONOVAN KEENE, IN THE

3999
02:21:37,804 --> 02:21:39,172
DRIVER'S SEAT OPERATING THE

4000
02:21:39,172 --> 02:21:40,473
SLIDES, THOUGH SHE DOES A HECK

4001
02:21:40,473 --> 02:21:42,308
OF A LOT MORE, IS CINDY FISHER,

4002
02:21:42,308 --> 02:21:47,380
OUR WEB AND SOCIAL MEDIA LEAD.

4003
02:21:47,380 --> 02:21:49,082
I'VE ENCOURAGED THEM TO CHIME IN

4004
02:21:49,082 --> 02:21:50,550
IF I MISSPEAK OR IF THERE'S

4005
02:21:50,550 --> 02:21:54,354
QUESTIONS AT THE END THAT ARE

4006
02:21:54,354 --> 02:21:55,221
OVER MY HEAD, THEY'LL BE ABLE TO

4007
02:21:55,221 --> 02:22:05,431
CONTRIBUTE.

4008
02:22:13,239 --> 02:22:14,307
MY FOCUS WILL BE REALLY ON THE

4009
02:22:14,307 --> 02:22:15,742
FIRST COUPLE OF THINGS, GIVING

4010
02:22:15,742 --> 02:22:18,811
YOU THE FRAMEWORK FOR OUR NEW

4011
02:22:18,811 --> 02:22:20,546
WEBSITE, AND A DEMO OF THE HOME

4012
02:22:20,546 --> 02:22:22,048
PAGE.

4013
02:22:22,048 --> 02:22:24,484
AND I'LL BREEZE THROUGH THE LAST

4014
02:22:24,484 --> 02:22:32,358
TWO YOU BULLETS.

4015
02:22:32,358 --> 02:22:33,393
OUR WORK STARTED IN OCTOBER.

4016
02:22:33,393 --> 02:22:36,329
WE HAD AWARDED A CONTRACT TO A

4017
02:22:36,329 --> 02:22:39,666
VENDOR KNOWN AS ARCH IN THE

4018
02:22:39,666 --> 02:22:43,836
EARLY FALL.

4019
02:22:43,836 --> 02:22:45,171
IT WAS COMPETED THROUGH WOMEN

4020
02:22:45,171 --> 02:22:46,806
AND MINORITY OWNED SPECIAL

4021
02:22:46,806 --> 02:22:48,374
CONTRACTING VEHICLE.

4022
02:22:48,374 --> 02:22:49,809
ARCH HAS BEEN A FANTASTIC

4023
02:22:49,809 --> 02:22:57,016
PARTNER IN THIS PROCESS SO FAR.

4024
02:22:57,016 --> 02:22:58,651
SO THERE'S A LOT OF WILL AND

4025
02:22:58,651 --> 02:23:03,456
INITIATIVE BEHIND THIS REDESIGN,

4026
02:23:03,456 --> 02:23:06,959
BUT THERE'S ALSO SOME FORCING

4027
02:23:06,959 --> 02:23:07,660
FUNCTIONS.

4028
02:23:07,660 --> 02:23:09,095
NAMELY, ADHERENCE TO NEW

4029
02:23:09,095 --> 02:23:10,029
GOVERNMENT POLICIES ON WEB

4030
02:23:10,029 --> 02:23:12,799
DESIGN AND EVOLVING 508

4031
02:23:12,799 --> 02:23:16,269
COMPLIANCE.

4032
02:23:16,269 --> 02:23:17,370
THE GOVERNMENT POLICIES I'M

4033
02:23:17,370 --> 02:23:22,742
REFERRING TO IS THE PASSAGE IN

4034
02:23:22,742 --> 02:23:26,245
2018 OF THE 21ST CENTURY IDEA

4035
02:23:26,245 --> 02:23:28,014
ACT.

4036
02:23:28,014 --> 02:23:29,849
THE INTEGRATED DIGITAL

4037
02:23:29,849 --> 02:23:33,486
EXPERIENCE ACT.

4038
02:23:33,486 --> 02:23:35,621
THAT ACT WAS DESIGNED TO MAKE

4039
02:23:35,621 --> 02:23:38,658
FEDERAL WEBSITES WORK TOGETHER

4040
02:23:38,658 --> 02:23:41,294
SIMILARLY TO IMPROVE THE MOBILE

4041
02:23:41,294 --> 02:23:44,564
EXPERIENCE FOR THE WEBSITES, AND

4042
02:23:44,564 --> 02:23:45,431
TO IMPROVE ACCESSIBILITY

4043
02:23:45,431 --> 02:23:47,100
THROUGHOUT THOSE WEBSITES.

4044
02:23:47,100 --> 02:23:48,434
AND AMONG THE WAYS IN WHICH IT

4045
02:23:48,434 --> 02:23:50,303
DOES THAT IS BY REQUIRING A

4046
02:23:50,303 --> 02:23:55,041
COMMON SET OF CODE KNOWN AS THE

4047
02:23:55,041 --> 02:23:56,075
USWDS, UNITED STATES WEB DESIGN

4048
02:23:56,075 --> 02:23:59,779
SYSTEM.

4049
02:23:59,779 --> 02:24:01,714
AGAIN ALL TO MAKE IT AN EASIER

4050
02:24:01,714 --> 02:24:03,583
CUSTOMER EXPERIENCE.

4051
02:24:03,583 --> 02:24:04,650
CURRENTLY WE'RE NOT IN

4052
02:24:04,650 --> 02:24:08,921
COMPLIANCE WITH THAT.

4053
02:24:08,921 --> 02:24:14,727
ARCHED JUSJUST TO CLARIFY FOR TT

4054
02:24:14,727 --> 02:24:19,699
ARE NOT FAMILY, THE 508 WAS

4055
02:24:19,699 --> 02:24:21,634
REQUIRING ALL FEDERAL ELECTRONIC

4056
02:24:21,634 --> 02:24:22,535
CONTENT TO BE ACCESSIBLE TO

4057
02:24:22,535 --> 02:24:24,404
THOSE WITH DISABILITIES.

4058
02:24:24,404 --> 02:24:25,705
THE OTHER POINT I WANT TO

4059
02:24:25,705 --> 02:24:28,374
HIGHLIGHT ON THIS SLIDE IS THAT

4060
02:24:28,374 --> 02:24:30,610
WE'RE OPTIMIZING THE

4061
02:24:30,610 --> 02:24:32,745
RESPONSIVENESS OF OUR WEBSITE.

4062
02:24:32,745 --> 02:24:35,515
IT IS CURRENTLY RESPONSIVE, BY

4063
02:24:35,515 --> 02:24:38,484
THAT, WE MEAN THAT YOUR

4064
02:24:38,484 --> 02:24:39,752
EXPERIENCE, THE WEBSITE DESIGN

4065
02:24:39,752 --> 02:24:42,388
WILL ADJUST TO WHATEVER SIZE

4066
02:24:42,388 --> 02:24:44,490
DEVICE YOU'RE USING, BUT WE GOT

4067
02:24:44,490 --> 02:24:46,025
THERE BY RETROFITTING OUR

4068
02:24:46,025 --> 02:24:48,528
CURRENT WEBSITE FOR THAT,

4069
02:24:48,528 --> 02:24:49,729
WHEREAS THE NEW WEBSITE WILL BE

4070
02:24:49,729 --> 02:24:51,864
BUILT WITH THAT IN MIND FROM THE

4071
02:24:51,864 --> 02:24:53,466
GROUND UP, SO IT WILL BE AN EVEN

4072
02:24:53,466 --> 02:24:55,334
BETTER EXPERIENCE FOR THOSE THAT

4073
02:24:55,334 --> 02:24:57,003
ARE VISITING OUR SITE NOT ON A

4074
02:24:57,003 --> 02:25:02,575
DESKTOP.

4075
02:25:02,575 --> 02:25:03,776
AND I WILL TALK A LITTLE BIT

4076
02:25:03,776 --> 02:25:05,111
MORE ABOUT THE SEARCH FUNCTION.

4077
02:25:05,111 --> 02:25:12,285
NEXT SLIDE, CINDY.

4078
02:25:12,285 --> 02:25:15,788
WE USE A STANDARD SEARCH TOOL

4079
02:25:15,788 --> 02:25:18,424
ACROSS THE GOVERNMENT, IT'S

4080
02:25:18,424 --> 02:25:23,329
CALLED SEARCH.USA, AND IT

4081
02:25:23,329 --> 02:25:24,630
ACTUALLY WORKS PRETTY WELL, IT'S

4082
02:25:24,630 --> 02:25:25,298
PRETTY ROBUST.

4083
02:25:25,298 --> 02:25:27,633
WHAT WE FOUND IS THAT OUR

4084
02:25:27,633 --> 02:25:29,135
WEBSITE ISN'T ENGINEERED VERY

4085
02:25:29,135 --> 02:25:30,269
WELL TO SUPPORT THAT SEARCH

4086
02:25:30,269 --> 02:25:34,307
FUNCTION.

4087
02:25:34,307 --> 02:25:35,475
SO SOME OF THE EXAMPLES I'M

4088
02:25:35,475 --> 02:25:39,812
TALKING ABOUT HERE ARE USING

4089
02:25:39,812 --> 02:25:41,481
BETTER SEARCH ENGINE

4090
02:25:41,481 --> 02:25:43,416
OPTIMIZATION, CHANGING -- MAKING

4091
02:25:43,416 --> 02:25:45,418
SURE THAT ALL OF OUR URLs, ALL

4092
02:25:45,418 --> 02:25:48,688
OF OUR WEBSITE ADDRESSES, ARE UP

4093
02:25:48,688 --> 02:25:51,123
TO DATE, SO FOR EXAMPLE, IT

4094
02:25:51,123 --> 02:25:53,860
TRICKS THE SEARCH FUNCTION IF

4095
02:25:53,860 --> 02:25:55,261
OUR DEPARTMENT OF LAB MEDICINE

4096
02:25:55,261 --> 02:26:00,466
RIGHT NOW USES CP, A AN ACRONYM

4097
02:26:00,466 --> 02:26:02,435
FOR A PREVIOUS NAME IN THE

4098
02:26:02,435 --> 02:26:05,037
DEPARTMENT, IN ITS WEB ADDRESS.

4099
02:26:05,037 --> 02:26:06,739
SO THAT MAKES IT HARDER WHEN

4100
02:26:06,739 --> 02:26:08,708
SOMEBODY SEARCHES FOR DLM ON OUR

4101
02:26:08,708 --> 02:26:10,209
SEARCH FUNCTION TO LOCATE THAT

4102
02:26:10,209 --> 02:26:12,311
DEPARTMENT.

4103
02:26:12,311 --> 02:26:14,647
SO A LITTLE BIT OF INSIDE

4104
02:26:14,647 --> 02:26:16,082
BASEBALL THERE, BUT BY UPDATING

4105
02:26:16,082 --> 02:26:18,618
THESE WEB ADDRESSES, IT WILL

4106
02:26:18,618 --> 02:26:19,852
IMPROVE THE SEARCH OUTCOMES.

4107
02:26:19,852 --> 02:26:21,153
THE OTHER THING I WANT TO POINT

4108
02:26:21,153 --> 02:26:24,357
OUT HERE IS IN REMOVING OUTDATED

4109
02:26:24,357 --> 02:26:26,392
PAGES AND CONSOLIDATING

4110
02:26:26,392 --> 02:26:27,860
DUPLICATE CONTENT.

4111
02:26:27,860 --> 02:26:30,429
CURRENTLY WE HAVE 2300 WEBPAGES

4112
02:26:30,429 --> 02:26:32,532
ON OUR PUBLIC WEBSITE.

4113
02:26:32,532 --> 02:26:36,702
WE HAVE MORE WEBPAGES THAN WE DO

4114
02:26:36,702 --> 02:26:39,438
CLINICAL CENTER FTEs.

4115
02:26:39,438 --> 02:26:40,540
GOVERNMENT FTEs.

4116
02:26:40,540 --> 02:26:41,641
WHEN WE'RE DONE WITH THIS

4117
02:26:41,641 --> 02:26:44,143
PROJECT IN JUST A COUPLE OF

4118
02:26:44,143 --> 02:26:46,946
MONTHS, WE'LL HAVE CUT 500 OF

4119
02:26:46,946 --> 02:26:47,713
THOSE PAGES.

4120
02:26:47,713 --> 02:26:49,315
AND WE'LL STAY MINDFUL AND KEEP

4121
02:26:49,315 --> 02:26:50,850
GOING AFTER THAT.

4122
02:26:50,850 --> 02:26:53,219
BUT THERE WILL BE A REDUCTION OF

4123
02:26:53,219 --> 02:26:53,386
21%.

4124
02:26:53,386 --> 02:26:54,921
THAT WILL GET RID OF A LOT OF

4125
02:26:54,921 --> 02:27:05,064
CLUTTER.

4126
02:27:05,364 --> 02:27:06,566
BUT AS I SAID, WE WANT TO MAKE

4127
02:27:06,566 --> 02:27:07,767
THE MOST OF THIS OPPORTUNITY.

4128
02:27:07,767 --> 02:27:09,068
IT'S NOT JUST A COMPLIANCE

4129
02:27:09,068 --> 02:27:12,171
EXERCISE.

4130
02:27:12,171 --> 02:27:13,873
WE WANT TO MAKE OUR WEBSITE MORE

4131
02:27:13,873 --> 02:27:15,007
COMPETITIVE WITH ACADEMIC

4132
02:27:15,007 --> 02:27:17,743
MEDICAL CENTERS THAT OTHER STAFF

4133
02:27:17,743 --> 02:27:22,315
MAY CONSIDER WORKING AT AND

4134
02:27:22,315 --> 02:27:23,716
PATIENTS MY CONSIDER

4135
02:27:23,716 --> 02:27:24,717
PARTICIPATING IN A TRIAL THERE.

4136
02:27:24,717 --> 02:27:28,588
WE GET THAT CUSTOMERS THAT COME

4137
02:27:28,588 --> 02:27:32,425
TO OUR WEBSITE, VISITORS,

4138
02:27:32,425 --> 02:27:33,926
THEY'RE NOT GOING TO GIVE US

4139
02:27:33,926 --> 02:27:35,061
HANDICAP POINTS BECAUSE WE'RE

4140
02:27:35,061 --> 02:27:37,029
GOVERNMENT OR WE HAVE LESS OF A

4141
02:27:37,029 --> 02:27:37,830
MARKETING BUDGET.

4142
02:27:37,830 --> 02:27:39,398
THEY'RE EXPECTING THE SAME HIGH

4143
02:27:39,398 --> 02:27:40,166
QUALITY EXPERIENCE THAT THEY

4144
02:27:40,166 --> 02:27:47,707
WOULD GET FROM A LARGE AMC.

4145
02:27:47,707 --> 02:27:49,442
THE OTHER POINT I WANT TO

4146
02:27:49,442 --> 02:27:50,476
EMPHASIZE IN THIS SLIDE IS THE

4147
02:27:50,476 --> 02:27:52,478
REDUCTION OF PDFs, WHICH ARE

4148
02:27:52,478 --> 02:27:55,014
NOT VERY SEARCH-FRIENDLY, AND

4149
02:27:55,014 --> 02:27:56,549
ARE NOT VERY

4150
02:27:56,549 --> 02:28:00,720
ACCESSIBILITY-FRIENDLY.

4151
02:28:00,720 --> 02:28:01,988
HOWEVER, AND THE POINT DAVID WAS

4152
02:28:01,988 --> 02:28:03,422
JUST RAISING WITH ME, WE'RE

4153
02:28:03,422 --> 02:28:05,024
STILL GOING TO EXPLORE MANY

4154
02:28:05,024 --> 02:28:06,959
OPTIONS IN WHICH PEOPLE WHO WANT

4155
02:28:06,959 --> 02:28:09,161
TO DOWNLOAD AND PRINT PAGES FROM

4156
02:28:09,161 --> 02:28:11,530
OUR WEBSITE ARE ABLE TO DO SO.

4157
02:28:11,530 --> 02:28:13,366
THERE ARE PRINT OPTIONS OUT

4158
02:28:13,366 --> 02:28:16,035
THERE THAT AREN'T NECESSARILY

4159
02:28:16,035 --> 02:28:17,470
PDF THAT WE CAN EQUIP OUR

4160
02:28:17,470 --> 02:28:18,804
WEBSITE WITH, AND WE'RE

4161
02:28:18,804 --> 02:28:23,376
EXPLORING THAT.

4162
02:28:23,376 --> 02:28:26,045
AND OF COURSE MORE CONSISTENCY.

4163
02:28:26,045 --> 02:28:26,812
OKAY.

4164
02:28:26,812 --> 02:28:30,983
SO LET'S GET INTO THE WEBSITE.

4165
02:28:30,983 --> 02:28:31,984
SO THAT'S WHAT THE WEBSITE

4166
02:28:31,984 --> 02:28:32,985
LOOKED LIKE WHEN I FIRST GOT

4167
02:28:32,985 --> 02:28:35,821
HERE.

4168
02:28:35,821 --> 02:28:36,389
10 YEARS AGO.

4169
02:28:36,389 --> 02:28:38,124
WE PUT A FRESH COAT OF PAINT ON

4170
02:28:38,124 --> 02:28:39,125
IT A FEW YEARS LATER.

4171
02:28:39,125 --> 02:28:40,660
WE DIDN'T REBUILD IT LIKE WE'RE

4172
02:28:40,660 --> 02:28:40,926
DOING NOW.

4173
02:28:40,926 --> 02:28:42,662
WE WORKED WITH THE EXISTING CODE

4174
02:28:42,662 --> 02:28:45,931
AND STRUCTURE, BUT WE GAVE IT A

4175
02:28:45,931 --> 02:28:50,036
DIFFERENT LOOK.

4176
02:28:50,036 --> 02:28:52,538
NOW I AM GOING TO GIVE YOU A

4177
02:28:52,538 --> 02:28:56,275
SNEAK PEEK AT OUR REDESIGNED

4178
02:28:56,275 --> 02:29:03,783
HOME PAGE.

4179
02:29:03,783 --> 02:29:04,850
I'LL GIVE YOU A MOMENT TO

4180
02:29:04,850 --> 02:29:05,518
PROCESS IT.

4181
02:29:05,518 --> 02:29:06,719
THERE'S A LOT THAT WE'RE EXCITED

4182
02:29:06,719 --> 02:29:07,353
ABOUT THIS.

4183
02:29:07,353 --> 02:29:09,288
NOW OUR HOME PAGE GETS ABOUT A

4184
02:29:09,288 --> 02:29:15,828
MILLION VISITS A YEAR.

4185
02:29:15,828 --> 02:29:19,465
WE'RE THE CROWN JEWEL WITHIN THE

4186
02:29:19,465 --> 02:29:20,299
GOVERNMENT.

4187
02:29:20,299 --> 02:29:22,535
WE'RE OFTEN CALLED THAT, THE

4188
02:29:22,535 --> 02:29:24,403
CLINICAL CENTER.

4189
02:29:24,403 --> 02:29:25,671
WE'RE A WORLD RENOWNED RESEARCH

4190
02:29:25,671 --> 02:29:27,239
HOSPITAL.

4191
02:29:27,239 --> 02:29:28,507
WE WANT TO MAKE SURE THAT WHEN

4192
02:29:28,507 --> 02:29:31,143
PEOPLE COME TO OUR FRONT PORCH,

4193
02:29:31,143 --> 02:29:32,678
EXPERIENCE US FOR THE FIRST

4194
02:29:32,678 --> 02:29:34,346
TIME, THAT WE HAVE A WEBSITE

4195
02:29:34,346 --> 02:29:36,015
THAT WE MAKE AN IMPRESSION THAT

4196
02:29:36,015 --> 02:29:37,516
CONVEYS THAT WE'RE A WORLD

4197
02:29:37,516 --> 02:29:39,952
RENOWNED ENTITY.

4198
02:29:39,952 --> 02:29:42,421
WE THINK THIS WILL HELP US GET

4199
02:29:42,421 --> 02:29:45,224
THERE A WHOLE LOT CLOSER.

4200
02:29:45,224 --> 02:29:46,826
THERE'S A FEW ELEMENTS I WANT TO

4201
02:29:46,826 --> 02:29:48,961
POINT OUT ABOUT THIS.

4202
02:29:48,961 --> 02:29:51,263
NOTICE AT THE VERY TOP LEFT, IT

4203
02:29:51,263 --> 02:29:52,665
SAYS OFFICIAL WEBSITE OF THE

4204
02:29:52,665 --> 02:29:53,199
UNITED STATES GOVERNMENT.

4205
02:29:53,199 --> 02:29:54,734
WE DON'T CURRENTLY HAVE THAT ON

4206
02:29:54,734 --> 02:29:56,669
OUR WEBSITE, BECAUSE YOU'RE ONLY

4207
02:29:56,669 --> 02:29:58,537
PERMIT TODAY HAVE THAT ON YOUR

4208
02:29:58,537 --> 02:30:00,606
WEBSITE IF YOU'RE IN COMPLIANCE

4209
02:30:00,606 --> 02:30:01,741
WITH THE IDEA ACT.

4210
02:30:01,741 --> 02:30:03,743
SO WHEN YOU VISIT A GOVERNMENT

4211
02:30:03,743 --> 02:30:05,377
WEBSITE, YOU SEE IT, IT MEANS

4212
02:30:05,377 --> 02:30:06,145
THEY'VE GOTTEN THERE.

4213
02:30:06,145 --> 02:30:07,680
IF YOU DON'T SEE IT, IT MEANS

4214
02:30:07,680 --> 02:30:08,581
THEY'RE STILL TRYING TO GET

4215
02:30:08,581 --> 02:30:14,386
THERE.

4216
02:30:14,386 --> 02:30:16,021
ANOTHER THING I'LL POINT OUT IS

4217
02:30:16,021 --> 02:30:19,792
PROMINENCE OF MAIRG AMERICA'S RH

4218
02:30:19,792 --> 02:30:20,659
HOSPITAL, NOT GETTING INTO

4219
02:30:20,659 --> 02:30:21,527
SPECIFIC TEXT TODAY BUT RATHER

4220
02:30:21,527 --> 02:30:22,661
THE CONCEPT, AND THIS IS

4221
02:30:22,661 --> 02:30:24,330
SOMETHING THAT'S BEEN IMPRESSED

4222
02:30:24,330 --> 02:30:25,898
UPON ME BY JACK LESLIE, ONE OF

4223
02:30:25,898 --> 02:30:30,636
THE BOARD MEMBERS, THE POINT,

4224
02:30:30,636 --> 02:30:32,471
WITH NIH CLINICAL CENTER PEOPLE

4225
02:30:32,471 --> 02:30:33,539
NOT INTUITIVELY KNOWING EXACTLY

4226
02:30:33,539 --> 02:30:38,310
WHAT WE DO, HAVING A TAGLINE

4227
02:30:38,310 --> 02:30:41,714
ATTACHED TO OUR BRAND IS

4228
02:30:41,714 --> 02:30:43,015
ESPECIALLY IMPORTANT TO EXPLAIN

4229
02:30:43,015 --> 02:30:43,449
THAT.

4230
02:30:43,449 --> 02:30:44,817
SO RIGHT NOW I'M WORKING WITH

4231
02:30:44,817 --> 02:30:49,088
THE OFFICE OF GENERAL COUNSEL TO

4232
02:30:49,088 --> 02:30:50,489
EXPLORE TRADEMARK OPTIONS FOR

4233
02:30:50,489 --> 02:30:51,390
VARIOUS PHRASES.

4234
02:30:51,390 --> 02:30:52,525
WE HAVE TO SEE WHAT'S ALREADY

4235
02:30:52,525 --> 02:30:56,362
BEEN CLAIM, WHAT HASN'T, AND

4236
02:30:56,362 --> 02:31:00,733
BASED ON THOSE OUTCOMES, WE'LL

4237
02:31:00,733 --> 02:31:02,401
BE ABLE TO EVEN USE IT MORE

4238
02:31:02,401 --> 02:31:03,869
PROMINENTLY OR ATTACH IT CLOSER

4239
02:31:03,869 --> 02:31:04,703
TO OUR LOGO.

4240
02:31:04,703 --> 02:31:06,338
THE EMERGENCY ALERT MESSAGE, WE

4241
02:31:06,338 --> 02:31:07,606
HAVE THAT CAPABILITY NOW, THIS

4242
02:31:07,606 --> 02:31:09,575
IS JUST A REDESIGN OF IT.

4243
02:31:09,575 --> 02:31:11,977
WE PUT UP INCLEMENT WEATHER

4244
02:31:11,977 --> 02:31:13,579
MESSAGES AND THINGS LIKE THAT

4245
02:31:13,579 --> 02:31:14,880
THERE WHEN THERE IS AN

4246
02:31:14,880 --> 02:31:25,925
EMERGENCYISN'T ANEMERGENCY, THA.

4247
02:31:25,925 --> 02:31:27,159
NOW I WANT TO POINT OUT THE

4248
02:31:27,159 --> 02:31:28,394
NAVIGATIONS HERE.

4249
02:31:28,394 --> 02:31:29,261
CURRENTLY, IF YOU GO TO OUR

4250
02:31:29,261 --> 02:31:30,696
CURRENT WEBSITE IS IT WOULD JUST

4251
02:31:30,696 --> 02:31:31,831
TAKE YOU TO A SINGLE PAGE.

4252
02:31:31,831 --> 02:31:35,768
IT'S NOT EVEN A DROPDOWN.

4253
02:31:35,768 --> 02:31:39,305
DROPDOWNS MIGHT BE KIND OF 20/20

4254
02:31:39,305 --> 02:31:40,840
WHERE YOU GO STRAIGHT DOWN.

4255
02:31:40,840 --> 02:31:42,641
BUT BEING 2024, WE'RE USING

4256
02:31:42,641 --> 02:31:44,610
WHAT'S CALLED MEGA MENUS, WHICH

4257
02:31:44,610 --> 02:31:45,477
MEANS RATHER THAN DROPPING DOWN,

4258
02:31:45,477 --> 02:31:49,782
THEY GO ACROSS THE SCREEN.

4259
02:31:49,782 --> 02:31:50,816
IT'S MORE NATURAL TO READ AND

4260
02:31:50,816 --> 02:31:52,785
PROCESS INFORMATION THAT WAY

4261
02:31:52,785 --> 02:31:54,653
THAN TO LOOK DOWN A LIST.

4262
02:31:54,653 --> 02:31:56,055
IT ALSO GIVES YOU A LITTLE MORE

4263
02:31:56,055 --> 02:31:57,756
REAL ESTATE TO PROVIDE OPTIONS,

4264
02:31:57,756 --> 02:31:59,258
SO THINGS ARE A HECK OF A LOT

4265
02:31:59,258 --> 02:32:00,492
EASIER TO FIND.

4266
02:32:00,492 --> 02:32:02,194
AGAIN, WE DON'T HAVE ANY OF

4267
02:32:02,194 --> 02:32:04,096
THOSE OPTIONS CURRENTLY

4268
02:32:04,096 --> 02:32:04,630
AVAILABLE.

4269
02:32:04,630 --> 02:32:07,433
WE JUST HAVE DIRECT LINKS TO

4270
02:32:07,433 --> 02:32:09,068
SPECIFIC PAGE IN OUR CURRENT TOP

4271
02:32:09,068 --> 02:32:14,406
MAP.

4272
02:32:14,406 --> 02:32:16,008
WE HAVE THIS BIG WHAT WE CALL A

4273
02:32:16,008 --> 02:32:17,009
HERO IMAGE IN THE FRONT.

4274
02:32:17,009 --> 02:32:19,545
RIGHT NOW WE HAVE A ROTATING

4275
02:32:19,545 --> 02:32:19,812
CAROUSEL.

4276
02:32:19,812 --> 02:32:20,479
WHAT WE FIND IS THAT PEOPLE

4277
02:32:20,479 --> 02:32:24,083
DON'T REALLY LINGER ON A WEBPAGE

4278
02:32:24,083 --> 02:32:27,519
TO WATCH THE CAROUSEL ROTATE.

4279
02:32:27,519 --> 02:32:29,054
RATHER, WHAT THEY NEED IS WHEN

4280
02:32:29,054 --> 02:32:34,093
THEY APPROACH THE WEBSITE, TO

4281
02:32:34,093 --> 02:32:35,394
EXPERIENCE AN IMAGE THAT PULLS

4282
02:32:35,394 --> 02:32:36,528
THEM INTO THE PAGE RIGHT AWAY

4283
02:32:36,528 --> 02:32:38,564
AND GRABS THEM.

4284
02:32:38,564 --> 02:32:39,999
AND LIKE I SAID, MAYBE THOSE

4285
02:32:39,999 --> 02:32:43,636
IMAGES WILL CHANGE OVER TIME,

4286
02:32:43,636 --> 02:32:47,039
BUT IT'S ACTUALLY A DEPARTURE

4287
02:32:47,039 --> 02:32:48,574
FROM OUR OLD WEBSITE TO NOT HAVE

4288
02:32:48,574 --> 02:32:51,277
THAT ROTATING INFORMATION.

4289
02:32:51,277 --> 02:32:53,779
JACK HAD ACTUALLY SUGGESTED THAT

4290
02:32:53,779 --> 02:32:55,514
WE KIND OF ANIMATE THAT IMAGE,

4291
02:32:55,514 --> 02:32:57,383
PUT IT IN MOTION, WHICH IS

4292
02:32:57,383 --> 02:32:58,350
INCREASINGLY POPULAR IN THE

4293
02:32:58,350 --> 02:32:59,618
COMMERCIAL SECTOR.

4294
02:32:59,618 --> 02:33:02,554
WE'RE STILL WORKING THROUGH,

4295
02:33:02,554 --> 02:33:04,957
THOUGH, WHETHER WE CAN DO SO IN

4296
02:33:04,957 --> 02:33:06,959
AN ACCESSIBLE WAY.

4297
02:33:06,959 --> 02:33:08,060
RIGHT NOW WE HAVEN'T BEEN ABLE

4298
02:33:08,060 --> 02:33:10,029
TO DO THAT IN A WAY THAT WILL

4299
02:33:10,029 --> 02:33:11,463
COMPLY WITH 508 REQUIREMENTS,

4300
02:33:11,463 --> 02:33:12,564
BUT WE'LL CONTINUE TO EXPLORE

4301
02:33:12,564 --> 02:33:18,237
THAT.

4302
02:33:18,237 --> 02:33:19,705
IF YOU SCROLL DOWN A LITTLE BIT,

4303
02:33:19,705 --> 02:33:20,706
AGAIN DON'T WORRY ABOUT THE

4304
02:33:20,706 --> 02:33:21,974
SPECIFIC TEXT BUT WE WANT TO

4305
02:33:21,974 --> 02:33:22,942
MAKE SURE THAT EACH OF OUR

4306
02:33:22,942 --> 02:33:24,076
WEBPAGES FRONT AND CENTER HAVE

4307
02:33:24,076 --> 02:33:25,244
SOME KIND OF CALL TO ACTION FOR

4308
02:33:25,244 --> 02:33:28,013
EACH DEPARTMENT.

4309
02:33:28,013 --> 02:33:29,214
STARTING WITH HOW TO JOIN A

4310
02:33:29,214 --> 02:33:29,882
STUDY.

4311
02:33:29,882 --> 02:33:31,083
BUT THEN IF YOU SCROLL DOWN A

4312
02:33:31,083 --> 02:33:35,287
LITTLE FURTHER, YOU'LL SEE

4313
02:33:35,287 --> 02:33:36,488
THERE'S ACCESS LINKS TO KEY

4314
02:33:36,488 --> 02:33:39,892
PATIENT RESOURCES, SUCH AS THE

4315
02:33:39,892 --> 02:33:41,427
PATIENT PORTAL, PATIENT SERVICES

4316
02:33:41,427 --> 02:33:41,660
PAGE.

4317
02:33:41,660 --> 02:33:43,562
RIGHT NOW ON OUR HOME PAGE, NONE

4318
02:33:43,562 --> 02:33:47,032
OF THAT'S AVAILABLE.

4319
02:33:47,032 --> 02:33:48,901
AND WHAT WE'LL DO IS, YOU'LL SEE

4320
02:33:48,901 --> 02:33:51,270
THAT THE TOP HALF OR WHAT WE

4321
02:33:51,270 --> 02:33:53,005
CALL ABOVE THE FOLD, IS ALL

4322
02:33:53,005 --> 02:33:54,406
PATIENT FOCUSED.

4323
02:33:54,406 --> 02:33:55,975
PUBLIC FOCUSED.

4324
02:33:55,975 --> 02:33:58,911
WE WANT TO MAKE SURE THAT WE

4325
02:33:58,911 --> 02:34:01,613
TAKE CARE OF THAT AUDIENCE FIRST

4326
02:34:01,613 --> 02:34:04,450
AND FOREMOST.

4327
02:34:04,450 --> 02:34:05,751
AND THEN JUST WANT TO GO DOWN TO

4328
02:34:05,751 --> 02:34:10,055
THE BOTTOM, YOU CAN SEE WHAT THE

4329
02:34:10,055 --> 02:34:11,357
SEARCHES AT THE BOTTOM LOOK LIKE

4330
02:34:11,357 --> 02:34:14,326
AS WELL.

4331
02:34:14,326 --> 02:34:15,794
BUT OKAY, SO YOU'VE MADE TO THE

4332
02:34:15,794 --> 02:34:16,328
BOTTOM OF THE PAGE.

4333
02:34:16,328 --> 02:34:17,963
THIS IS KIND OF A COOL FEE TEU

4334
02:34:17,963 --> 02:34:19,732
GET BACK TO THE MIC.

4335
02:34:19,732 --> 02:34:21,100
THE BACK TO TOP TABITHA YOU SEE

4336
02:34:21,100 --> 02:34:25,871
IN THE LOWER RIGHT CORNER, IF

4337
02:34:25,871 --> 02:34:27,106
YOU CLICK ON THAT, IT WILL JUMP

4338
02:34:27,106 --> 02:34:28,474
YOU TO THE TOP OF THE PAGE SO

4339
02:34:28,474 --> 02:34:29,274
YOU DON'T HAVE TO SCROLL ALL THE

4340
02:34:29,274 --> 02:34:33,112
WAY UP.

4341
02:34:33,112 --> 02:34:35,080
MANUALLY.

4342
02:34:35,080 --> 02:34:37,583
IT'S ALSO JUST TO IMPROVE YOUR

4343
02:34:37,583 --> 02:34:48,060
EXPERIENCE WITH THE WEBPAGE.

4344
02:34:49,728 --> 02:34:57,403
ANWE ALSO WANT TO SHOW YOU THAT

4345
02:34:57,403 --> 02:34:59,004
EVEN THOUGH THAT WASN'T

4346
02:34:59,004 --> 02:35:00,205
AVAILABLE ON THE DYNAMIC PAGE,

4347
02:35:00,205 --> 02:35:04,810
WE'RE ACTUALLY GOING TO EXTEND

4348
02:35:04,810 --> 02:35:05,778
THE LENGTH OF THE HOME PAGE,

4349
02:35:05,778 --> 02:35:07,179
WE'RE GOING TO ELONGATE IT.

4350
02:35:07,179 --> 02:35:10,082
THIS WAS ANOTHER SUGGESTION THAT

4351
02:35:10,082 --> 02:35:13,485
JACK GAVE US THAT'S MORE COMMON

4352
02:35:13,485 --> 02:35:14,486
IN THE COMMERCIAL SECTOR.

4353
02:35:14,486 --> 02:35:16,055
THAT WAY, PEOPLE DON'T

4354
02:35:16,055 --> 02:35:17,790
NECESSARILY HAVE TO START

4355
02:35:17,790 --> 02:35:19,391
GUESSING WITH THEIR CLICKS, BUT

4356
02:35:19,391 --> 02:35:21,760
RATHER CAN SCROLL DOWN AND

4357
02:35:21,760 --> 02:35:23,228
EYEBALL TO LOOK FOR WHAT THEY

4358
02:35:23,228 --> 02:35:24,329
WANT WITHOUT HAVING TO CLICK

4359
02:35:24,329 --> 02:35:26,065
THROUGH OR DIG INTO YOUR WEBSITE

4360
02:35:26,065 --> 02:35:27,933
RIGHT AWAY.

4361
02:35:27,933 --> 02:35:29,635
SO WHILE ABOVE THE FOLD WILL BE

4362
02:35:29,635 --> 02:35:31,270
PATIENT FOCUSED, WE WANT TO PUT

4363
02:35:31,270 --> 02:35:32,371
A WHOLE LOT MORE INFORMATION

4364
02:35:32,371 --> 02:35:34,807
AVAILABLE FOR STAFF AND

4365
02:35:34,807 --> 02:35:37,242
RESEARCHERS BELOW THE FOLD AS

4366
02:35:37,242 --> 02:35:38,010
WELL.

4367
02:35:38,010 --> 02:35:39,745
AND INCLUDE LINKS ON THE HOME

4368
02:35:39,745 --> 02:35:41,914
PAGE THERE THAT WE DIDN'T HAVE

4369
02:35:41,914 --> 02:35:44,316
BEFORE SUCH AS TO OUR SPANISH

4370
02:35:44,316 --> 02:35:51,723
LANGUAGE CONTENT.

4371
02:35:51,723 --> 02:35:52,791
OKAY, I'M JUST GOING TO RUN

4372
02:35:52,791 --> 02:35:55,861
THROUGH A FEW EXAMPLES OF HOW IT

4373
02:35:55,861 --> 02:35:56,995
MIGHT LOOK INTERIOR.

4374
02:35:56,995 --> 02:35:58,997
THIS IS OUR CURRENT "ABOUT US"

4375
02:35:58,997 --> 02:35:59,765
PAGES.

4376
02:35:59,765 --> 02:36:01,900
THE CLINICAL CENTER HAS GROWN AN

4377
02:36:01,900 --> 02:36:03,068
AWFUL LOT OVER THE YEARS.

4378
02:36:03,068 --> 02:36:05,037
ONE BUILDING TO THREE ATTACHED

4379
02:36:05,037 --> 02:36:05,471
BUILDINGS.

4380
02:36:05,471 --> 02:36:06,805
OUR MISSION HAS GROWN QUITE A

4381
02:36:06,805 --> 02:36:07,606
BIT.

4382
02:36:07,606 --> 02:36:09,808
AND WE JUST KEPT ADDING PAGES TO

4383
02:36:09,808 --> 02:36:12,878
THE "ABOUT US" PAGE.

4384
02:36:12,878 --> 02:36:15,247
WE'VE STREAMLINED THAT WITH OUR

4385
02:36:15,247 --> 02:36:15,881
NEW WEBSITE.

4386
02:36:15,881 --> 02:36:17,082
IT WILL LOOK SOMETHING LIKE

4387
02:36:17,082 --> 02:36:18,951
THIS, JUST ONE PAGE.

4388
02:36:18,951 --> 02:36:29,495
WHERE IT'S ALL AVAILABLE TO YOU.

4389
02:36:32,531 --> 02:36:33,265
YOU CAN SEE IN TOTALITY.

4390
02:36:33,265 --> 02:36:34,399
NEXT SLIDE, PLEAS.

4391
02:36:34,399 --> 02:36:36,034
ANOTHER EXAMPLE IS OUR BLOOD

4392
02:36:36,034 --> 02:36:37,069
BANK PAGE, VERY IMPORTANT

4393
02:36:37,069 --> 02:36:39,705
FUNCTION WITHIN THE CLINICAL

4394
02:36:39,705 --> 02:36:40,739
CENTER.

4395
02:36:40,739 --> 02:36:42,541
IF YOU COME TO THAT PAGE, YOU'RE

4396
02:36:42,541 --> 02:36:44,643
PRESENTED WITH AN ESSAY.

4397
02:36:44,643 --> 02:36:49,548
UNDER OUR NEW REDESIGN APPROACH,

4398
02:36:49,548 --> 02:36:51,850
WE WORKED VERY CLOSELY WITH THE

4399
02:36:51,850 --> 02:36:53,952
BLOOD BANK FOLKS, SEE IT WILL BE

4400
02:36:53,952 --> 02:36:55,154
FAR MORE STREAMLINED, THIS WILL

4401
02:36:55,154 --> 02:36:56,088
BE VERY DYNAMIC.

4402
02:36:56,088 --> 02:36:57,055
YOU'LL NOTICE AT THE TOP THERE,

4403
02:36:57,055 --> 02:37:01,293
WE'RE ACTUALLY ABLE TO HIGHLIGHT

4404
02:37:01,293 --> 02:37:03,562
WHAT BLOOD TYPES WERE WE'RE IN

4405
02:37:03,562 --> 02:37:04,963
PARTICULAR NEED FOR AT ANY GIVEN

4406
02:37:04,963 --> 02:37:09,168
TIME, AND THAT WILL BE UPDATED

4407
02:37:09,168 --> 02:37:10,836
BY THE BLOOD BANK EACH WEEK.

4408
02:37:10,836 --> 02:37:12,137
I WANT TO EMPHASIZE THAT

4409
02:37:12,137 --> 02:37:15,207
THROUGHOUT THIS ENTIRE PROCESS,

4410
02:37:15,207 --> 02:37:17,676
WE CONSULTED WITH THE INDIVIDUAL

4411
02:37:17,676 --> 02:37:19,211
DEPARTMENTS, PATIENT ADVISORY

4412
02:37:19,211 --> 02:37:24,016
GROUP, VARIOUS STAKEHOLDERS TO

4413
02:37:24,016 --> 02:37:24,550
ENSURE INPUT.

4414
02:37:24,550 --> 02:37:26,585
WE'RE NOT JUST RELYING ON OUR

4415
02:37:26,585 --> 02:37:28,353
OWN PROFESSIONAL JUDGMENT OR

4416
02:37:28,353 --> 02:37:30,088
MARKET RESEARCH ON OTHER

4417
02:37:30,088 --> 02:37:31,857
ACADEMIC MEDICAL CENTERS'

4418
02:37:31,857 --> 02:37:38,564
WEBSITES.

4419
02:37:38,564 --> 02:37:39,631
ANOTHER EXAMPLE WHERE WE HAVE

4420
02:37:39,631 --> 02:37:41,066
MULTIPLE CALENDAR PAGES ACROSS

4421
02:37:41,066 --> 02:37:45,003
OUR WEBSITE.

4422
02:37:45,003 --> 02:37:45,971
THEY'RE ALL PRETTY HANDY.

4423
02:37:45,971 --> 02:37:47,039
ONE THING THAT'S BEEN A LITTLE

4424
02:37:47,039 --> 02:37:49,675
BIT HEARTENING THROUGH THIS

4425
02:37:49,675 --> 02:37:52,077
PROCESS IS WE'VE SPOKEN TO

4426
02:37:52,077 --> 02:37:53,011
STAKEHOLDERS, THEY FOUND OUR

4427
02:37:53,011 --> 02:37:54,980
WEBSITE SERVICEABLE.

4428
02:37:54,980 --> 02:37:57,916
IT WASN'T THAT IT WAS A

4429
02:37:57,916 --> 02:37:58,250
DISASTER.

4430
02:37:58,250 --> 02:37:59,585
WE'RE MAKING A GOOD THING BETTER

4431
02:37:59,585 --> 02:38:02,688
THROUGH THIS PROCESS.

4432
02:38:02,688 --> 02:38:03,589
BUT ONE OF THE WAYS IN WHICH

4433
02:38:03,589 --> 02:38:05,891
WE'RE DOING THAT, MAKE THINGS

4434
02:38:05,891 --> 02:38:06,892
EASIER FOR PEOPLE TO FIND,

4435
02:38:06,892 --> 02:38:11,263
INCLUDING OUR STAFF, YOU WOULD

4436
02:38:11,263 --> 02:38:12,598
HAVE TO KNOW THAT GRAND ROUNDS,

4437
02:38:12,598 --> 02:38:15,133
FOR EXAMPLE, JUST GO BACK ONE,

4438
02:38:15,133 --> 02:38:19,238
CINDY, THE GRAND ROUNDS OPERATES

4439
02:38:19,238 --> 02:38:21,974
UNDER OUR TRAINING PROGRAM,

4440
02:38:21,974 --> 02:38:22,941
OCRTME, WHEREAS MUSIC IN THE

4441
02:38:22,941 --> 02:38:25,811
ATRIUM, THAT CALENDAR IS UNDER

4442
02:38:25,811 --> 02:38:27,012
COMMUNICATIONS, MY SHOP THAT

4443
02:38:27,012 --> 02:38:29,615
OVERSEES IT, SO THERE ISN'T ONE

4444
02:38:29,615 --> 02:38:31,316
CONSOLIDATED PLACE FOR ALL OF

4445
02:38:31,316 --> 02:38:32,150
THIS INFORMATION THAT SOMEBODY

4446
02:38:32,150 --> 02:38:41,693
WOULD KNOW TO GO TO GENERALLY.

4447
02:38:41,693 --> 02:38:43,095
SO WE'LL REPLACE THAT MENAGERIE

4448
02:38:43,095 --> 02:38:48,433
OF CAL DEARS  CALENDARS WITH A E

4449
02:38:48,433 --> 02:38:49,067
WHERE ALL OF THE INFORMATION IS

4450
02:38:49,067 --> 02:38:49,501
PRESENTED THERE.

4451
02:38:49,501 --> 02:38:51,336
IT WON'T BE BROKEN OUT BY

4452
02:38:51,336 --> 02:38:56,008
SEPARATE DEPARTMENTS.

4453
02:38:56,008 --> 02:38:57,743
OUR SENIOR STAFF PAGES, LAUNDRY

4454
02:38:57,743 --> 02:39:00,345
LIST.

4455
02:39:00,345 --> 02:39:00,979
 RIGHT NOW.

4456
02:39:00,979 --> 02:39:03,682
BUT WITH THE NEW WEBSITE, WE'RE

4457
02:39:03,682 --> 02:39:05,517
GOING TO ADD A WHOLE BUNCH OF

4458
02:39:05,517 --> 02:39:06,652
SEARCH FUNCTIONALITIES TO IT SO

4459
02:39:06,652 --> 02:39:12,591
YOU CAN LOOK UP NAMES.

4460
02:39:12,591 --> 02:39:13,458
SO YOU SEE A COUPLE OF DIFFERENT

4461
02:39:13,458 --> 02:39:14,826
WAYS, WE'LL HAVE ACTUAL PICTURES

4462
02:39:14,826 --> 02:39:23,935
OF THE PEOPLE, THE 6T 66 FL 6 FR

4463
02:39:23,935 --> 02:39:25,671
LEADERS, BUT THERE WON'T BE

4464
02:39:25,671 --> 02:39:28,173
MULTIPLE SENIOR LEADERSHIP PAGES

4465
02:39:28,173 --> 02:39:29,174
SCATTERED ACROSS THE CLINICAL

4466
02:39:29,174 --> 02:39:33,011
CENTER WEBSITE.

4467
02:39:33,011 --> 02:39:37,449
AND JUST A QUICK -- OH, BY THE

4468
02:39:37,449 --> 02:39:40,218
WAY BEFORE I TURN OVER TO MY

4469
02:39:40,218 --> 02:39:43,588
GOOD FRIEND DR. GAHL, YOU'RE IN

4470
02:39:43,588 --> 02:39:45,457
FOR A TREAT HEARING FROM HIM SO

4471
02:39:45,457 --> 02:39:47,059
I DEFINITELY WANT TO MAKE SURE I

4472
02:39:47,059 --> 02:39:47,859
FINISH ON TIME.

4473
02:39:47,859 --> 02:39:50,796
THE NEW WEBSITE WILL OFFER THIS

4474
02:39:50,796 --> 02:39:51,630
AUTO SURVEY OPTION.

4475
02:39:51,630 --> 02:39:53,065
YOU MIGHT HAVE EXPERIENCED THAT

4476
02:39:53,065 --> 02:39:54,466
ON WEBSITES YOU VISITED WHERE IF

4477
02:39:54,466 --> 02:39:57,836
YOU LINGER ON A PAGE FOR A

4478
02:39:57,836 --> 02:39:59,271
WHILE, IT ASKS IF YOU WANT TO

4479
02:39:59,271 --> 02:40:01,807
PROVIDE A COMMENT OR FEEDBACK ON

4480
02:40:01,807 --> 02:40:03,208
THE WEBPAGE.

4481
02:40:03,208 --> 02:40:05,210
AND THAT FEEDBACK WOULD THEN

4482
02:40:05,210 --> 02:40:06,044
COME TO US.

4483
02:40:06,044 --> 02:40:07,312
SO AFTER A FEW SECONDS, THAT

4484
02:40:07,312 --> 02:40:08,513
WILL POP UP AND PEOPLE WILL HAVE

4485
02:40:08,513 --> 02:40:12,184
THAT OPTION TO DO THAT.

4486
02:40:12,184 --> 02:40:13,719
OUR NEW WEBSITE WILL HAVE AI

4487
02:40:13,719 --> 02:40:14,286
CAPABILITY.

4488
02:40:14,286 --> 02:40:17,322
IT'S PARTICULARLY EXCITING TO

4489
02:40:17,322 --> 02:40:18,824
ME, AS SOMEBODY WHO ALSO

4490
02:40:18,824 --> 02:40:21,993
RECEIVES PATIENT RECRUITMENT,

4491
02:40:21,993 --> 02:40:25,597
BUT WE'RE NOT LAUNCHING WITH AI

4492
02:40:25,597 --> 02:40:26,898
FUNCTIONALITY, WE JUST HAVE THAT

4493
02:40:26,898 --> 02:40:27,999
CAPABILITY BECAUSE WE REALLY

4494
02:40:27,999 --> 02:40:30,402
WANT TO DO OUR HOMEWORK BEFORE

4495
02:40:30,402 --> 02:40:33,438
WE GO THERE.

4496
02:40:33,438 --> 02:40:35,173
AND PARTICULARLY, FOR EXAMPLE,

4497
02:40:35,173 --> 02:40:36,208
ON THE PATIENT RECRUITMENT SIDE,

4498
02:40:36,208 --> 02:40:37,609
THERE'S A LOT OF PRIVACY AND

4499
02:40:37,609 --> 02:40:40,612
SECURITY ISSUES THAT WE NEED TO

4500
02:40:40,612 --> 02:40:41,646
WORK THROUGH BEFORE WE LAUNCH

4501
02:40:41,646 --> 02:40:42,013
THAT.

4502
02:40:42,013 --> 02:40:43,782
BUT WE KNOW IT'S INEVITABLE THAT

4503
02:40:43,782 --> 02:40:47,719
THERE WILL BE SOME REALLY RICH

4504
02:40:47,719 --> 02:40:49,087
OPPORTUNITIES TO USE THAT

4505
02:40:49,087 --> 02:40:51,056
TECHNOLOGY.

4506
02:40:51,056 --> 02:40:52,391
I MENTIONED THE FLOATING

4507
02:40:52,391 --> 02:40:56,261
NAVIGATION.

4508
02:40:56,261 --> 02:40:57,929
AND SO THAT WRAPS UP MY

4509
02:40:57,929 --> 02:41:02,234
RUNTHROUGH OF OUR NEW WEBSITE IN

4510
02:41:02,234 --> 02:41:03,402
PROGRESS, AND IF ANYBODY HAS

4511
02:41:03,402 --> 02:41:05,270
QUESTIONS OR COMMENTS, WE'D BE

4512
02:41:05,270 --> 02:41:08,640
HAPPY TO HEAR IT OR WE CAN TAKE

4513
02:41:08,640 --> 02:41:11,676
IT BACK AND FOLLOW UP WITH YOU.

4514
02:41:11,676 --> 02:41:13,011
FIRE AWAY, DAVID.

4515
02:41:13,011 --> 02:41:15,480
>> FIRST OF ALL, LET ME
TELL YOU

4516
02:41:15,480 --> 02:41:19,317
THAT IT'S EXTRAORDINARILY HAPPY

4517
02:41:19,317 --> 02:41:21,420
TO SEE THE TYPE OF INNOVATION

4518
02:41:21,420 --> 02:41:23,722
THAT'S GOING INTO THIS, AND THAT

4519
02:41:23,722 --> 02:41:25,524
THE REASON IS TO MAKE IT EASIER

4520
02:41:25,524 --> 02:41:28,260
AND TO MAKE INFORMATION MORE

4521
02:41:28,260 --> 02:41:32,063
ACCESSIBLE AND TO ELIMINATE THE

4522
02:41:32,063 --> 02:41:32,831
SCAVENGER HUNT THAT YOU HAVE TO

4523
02:41:32,831 --> 02:41:33,932
GO THROUGH ON THE CURRENT

4524
02:41:33,932 --> 02:41:34,866
WEBSITE.

4525
02:41:34,866 --> 02:41:36,101
A QUESTION ABOUT THE SEARCH.

4526
02:41:36,101 --> 02:41:37,269
>> YES, SIR.

4527
02:41:37,269 --> 02:41:40,138
>> DIFFERENT AGENCIES I'VE

4528
02:41:40,138 --> 02:41:41,540
NOTICED, THEIR SEARCH BAR IS

4529
02:41:41,540 --> 02:41:44,576
LIMITED TO JUST SEARCHING ON

4530
02:41:44,576 --> 02:41:47,078
THEIR WEBSITE IN TERMS OF THE

4531
02:41:47,078 --> 02:41:48,180
RETURNS, AND IN OTHER CASES, IT

4532
02:41:48,180 --> 02:41:50,682
DOES A COMPLETE WORLDWIDE WEB

4533
02:41:50,682 --> 02:41:51,917
GOOGLE SEARCH.

4534
02:41:51,917 --> 02:41:55,587
SO ARE WE GOING TO LIMIT OUR

4535
02:41:55,587 --> 02:41:58,824
SEARCH JUST TO THE CL CLINICAL

4536
02:41:58,824 --> 02:42:00,158
CENTER, JUST TO THE NIH, ARE WE

4537
02:42:00,158 --> 02:42:02,961
GOING TO HAVE MULTIPLE SEARCH

4538
02:42:02,961 --> 02:42:03,195
OPTIONS?

4539
02:42:03,195 --> 02:42:05,363
>> PRESENTLY, OUR SEARCH
WOULD

4540
02:42:05,363 --> 02:42:08,500
JUST BE LIMITED TO THE CLINICAL

4541
02:42:08,500 --> 02:42:10,035
CENTER WEBSITE.

4542
02:42:10,035 --> 02:42:13,638
AS YOU POINTED OUT, FINDING WHAT

4543
02:42:13,638 --> 02:42:14,973
YOU WANT AMONG OUR PAGES ALONE

4544
02:42:14,973 --> 02:42:16,675
IS HARD ENOUGH, LET ALONE IF WE

4545
02:42:16,675 --> 02:42:19,411
WERE TO OPEN IT UP TO THE ENTIRE

4546
02:42:19,411 --> 02:42:21,146
WEB UNIVERSE.

4547
02:42:21,146 --> 02:42:23,748
BUT WE ARE RESEARCHING OTHER

4548
02:42:23,748 --> 02:42:26,618
SEARCH FUNCTIONS, WE'RE TRYING

4549
02:42:26,618 --> 02:42:27,652
TO KEEP UP WITH THAT BECAUSE WE

4550
02:42:27,652 --> 02:42:28,987
KNOW IT'S INCREDIBLY IMPORTANT.

4551
02:42:28,987 --> 02:42:31,223
WE KNOW MOST PEOPLE DON'T

4552
02:42:31,223 --> 02:42:32,157
BOOKMARK THE INTERIOR PAGES OF

4553
02:42:32,157 --> 02:42:33,925
THE CLINICAL CENTER.

4554
02:42:33,925 --> 02:42:36,528
THEY'LL FIND IT BY SEARCH.

4555
02:42:36,528 --> 02:42:37,929
AND ACTUALLY AN AREA THAT'S NOT

4556
02:42:37,929 --> 02:42:41,299
PART OF THIS PROJECT BUT THAT'S

4557
02:42:41,299 --> 02:42:43,034
COMING NEXT WOULD BE OUR

4558
02:42:43,034 --> 02:42:44,836
INTRANET, WHERE OUR STAFF GO TO

4559
02:42:44,836 --> 02:42:47,639
FIND A LOT OF OUR RESOURCES, AND

4560
02:42:47,639 --> 02:42:50,141
WE'RE GOING TO SEEK OUT A VERY

4561
02:42:50,141 --> 02:42:52,410
ELEGANT SEARCH OPTION FOR THAT

4562
02:42:52,410 --> 02:42:55,046
BECAUSE THEY USE TO FIND

4563
02:42:55,046 --> 02:42:57,682
POLICIES AND VERY GRANULAR

4564
02:42:57,682 --> 02:42:58,783
INFORMATION, AND I'D LOVE TO BE

4565
02:42:58,783 --> 02:43:01,486
ABLE TO CONSULT WITH YOU ALONG

4566
02:43:01,486 --> 02:43:02,153
THE WAY.

4567
02:43:02,153 --> 02:43:03,755
>> THAT WAS MY NEXT
QUESTION, I

4568
02:43:03,755 --> 02:43:06,725
NOTICE THE INTRANET, THE "GO-TO"

4569
02:43:06,725 --> 02:43:07,559
INTRANET LINK IS GONE.

4570
02:43:07,559 --> 02:43:08,527
WE'RE GOING TO LEAVE THAT OFF

4571
02:43:08,527 --> 02:43:09,294
FOR THE TIME BEING?

4572
02:43:09,294 --> 02:43:12,531
>> NO, WE'LL HAVE THE
INTRANET

4573
02:43:12,531 --> 02:43:15,267
PAGE LINK UP THERE.

4574
02:43:15,267 --> 02:43:16,468
IT SHOULD BE ON THE HOME PAGE.

4575
02:43:16,468 --> 02:43:19,304
>> IT LOOKS REALLY GREAT.

4576
02:43:19,304 --> 02:43:20,939
I CANNOT EMPHASIZE THAT ENOUGH.

4577
02:43:20,939 --> 02:43:21,873
>> THANK YOU.

4578
02:43:21,873 --> 02:43:24,409
WELL, IT'S BEEN A REAL TEAM

4579
02:43:24,409 --> 02:43:25,610
EFFORT, AND LIKE I SAID, THERE'S

4580
02:43:25,610 --> 02:43:27,012
BEEN MANY STAKEHOLDERS

4581
02:43:27,012 --> 02:43:29,047
THROUGHOUT THE CLINICAL CENTER,

4582
02:43:29,047 --> 02:43:30,715
INCLUDING FROM THE PATIENT

4583
02:43:30,715 --> 02:43:32,083
ADVISORY GROUP THAT HAS HELPED

4584
02:43:32,083 --> 02:43:32,951
US GET THERE.

4585
02:43:32,951 --> 02:43:34,185
BUT DONOVAN AND CINDY HAVE

4586
02:43:34,185 --> 02:43:34,786
REALLY LED THE WAY.

4587
02:43:34,786 --> 02:43:39,691
THANK YOU FOR SAYING THAT, SIR.

4588
02:43:39,691 --> 02:43:49,134
>> ANTOINETTE?

4589
02:43:49,134 --> 02:43:51,069
>> THE WEBSITE LOOKS
GREAT.

4590
02:43:51,069 --> 02:43:53,338
IT'S LESS BUSY AND CROWDED AND

4591
02:43:53,338 --> 02:43:54,739
JUNKED UP.

4592
02:43:54,739 --> 02:43:58,677
AND IT IS INVITING TO LOOK AT.

4593
02:43:58,677 --> 02:44:03,381
I REALLY APPRECIATE YOU ALL

4594
02:44:03,381 --> 02:44:07,886
SELECTING A PICTURE, THAT IMAGE,

4595
02:44:07,886 --> 02:44:09,120
AND IN THE FUTURE DO THAT AS

4596
02:44:09,120 --> 02:44:11,990
WELL, THAT HAS PEOPLE FROM THE

4597
02:44:11,990 --> 02:44:14,225
BIPOC COMMUNITY, BLACK,

4598
02:44:14,225 --> 02:44:16,294
INDIGENOUS PEOPLE OF COLOR,

4599
02:44:16,294 --> 02:44:18,496
BECAUSE EVEN THOUGH WE CALL THIS

4600
02:44:18,496 --> 02:44:21,499
AMERICA'S RESEARCH HOSPITAL,

4601
02:44:21,499 --> 02:44:28,640
LIKE I SAID, IT'S HARD TO GET

4602
02:44:28,640 --> 02:44:29,341
BLACK, AFRICAN AMERICAN BLACK

4603
02:44:29,341 --> 02:44:31,810
AND SOME OTHER PEOPLE OF COLOR

4604
02:44:31,810 --> 02:44:33,912
INTERESTED IN RESEARCH BECAUSE

4605
02:44:33,912 --> 02:44:35,814
THEY DON'T FEEL IT A PLACE OR

4606
02:44:35,814 --> 02:44:38,984
SPACE FOR THEM, OR IT'S JUST A

4607
02:44:38,984 --> 02:44:41,186
FEAR, A BIG FEAR, BASED ON

4608
02:44:41,186 --> 02:44:42,520
THINGS THAT HAVE HAPPENED IN THE

4609
02:44:42,520 --> 02:44:46,725
PAST.

4610
02:44:46,725 --> 02:44:48,259
SO I'M GLAD YOU SELECTED THAT

4611
02:44:48,259 --> 02:44:48,460
PHOTO.

4612
02:44:48,460 --> 02:44:50,428
IN THE FUTURE, LIKE I SAID,

4613
02:44:50,428 --> 02:44:51,696
PLEASE -- IF YOU'RE GOING TO

4614
02:44:51,696 --> 02:44:53,698
ROTATE THAT OUT, BECAUSE WHEN

4615
02:44:53,698 --> 02:44:55,000
YOU FIRST GO THERE, LIKE I SAID,

4616
02:44:55,000 --> 02:44:57,068
I'VE BEEN TRYING TO GET PEOPLE

4617
02:44:57,068 --> 02:45:00,372
TO TAKE ADVANTAGE OF THE

4618
02:45:00,372 --> 02:45:07,012
CLINICAL RESEARCH PROGRAMS HERE

4619
02:45:07,012 --> 02:45:12,250
AT NIH, AND IT'S FEAR, IT'S A

4620
02:45:12,250 --> 02:45:14,052
BIG FEAR OF THAT, THAT THEY JUST

4621
02:45:14,052 --> 02:45:15,153
DON'T KNOW.

4622
02:45:15,153 --> 02:45:17,489
AND BELIEVE IT OR NOT, SOME

4623
02:45:17,489 --> 02:45:24,996
DOCTORS THAT I'VE HAD DID NOT

4624
02:45:24,996 --> 02:45:26,798
KNOW THE GRAVITY OR WHAT NIH

4625
02:45:26,798 --> 02:45:28,266
ACTUALLY IS ENGAGED IN, BELIEVE

4626
02:45:28,266 --> 02:45:31,102
IT OR NOT.

4627
02:45:31,102 --> 02:45:31,970
THEY'RE STILL UNDER THE

4628
02:45:31,970 --> 02:45:34,239
IMPRESSION THAT RESEARCH-WISE,

4629
02:45:34,239 --> 02:45:36,074
WE JUST DEAL WITH RATS AND

4630
02:45:36,074 --> 02:45:37,842
MONKEYS AND Y'ALL HAVE A

4631
02:45:37,842 --> 02:45:38,610
HOSPITAL HERE?

4632
02:45:38,610 --> 02:45:41,546
COME ON, THEY'RE NOT THERE YET.

4633
02:45:41,546 --> 02:45:44,282
SO I'M GLAD THAT YOU HAVE

4634
02:45:44,282 --> 02:45:45,483
SOMETHING THAT'S SIMPLE THAT

4635
02:45:45,483 --> 02:45:48,353
PEOPLE CAN LOOK AT AND SEE THAT

4636
02:45:48,353 --> 02:45:50,955
IT'S MORE THAN JUST RATS AND

4637
02:45:50,955 --> 02:45:52,457
MONKEYS AND RABBITS YOU'RE

4638
02:45:52,457 --> 02:45:53,658
DEALING WITH HERE.

4639
02:45:53,658 --> 02:45:54,726
YOU'RE DEALING WITH HUMAN

4640
02:45:54,726 --> 02:45:55,427
BEINGS.

4641
02:45:55,427 --> 02:45:55,660
THANKS.

4642
02:45:55,660 --> 02:46:03,068
>> THANK YOU.

4643
02:46:03,068 --> 02:46:03,935
>> GREAT.

4644
02:46:03,935 --> 02:46:04,903
WELL, THANK YOU AND

4645
02:46:04,903 --> 02:46:06,237
CONGRATULATIONS TO YOU AND YOUR

4646
02:46:06,237 --> 02:46:06,671
TEAM.

4647
02:46:06,671 --> 02:46:09,908
I MEAN, REALLY TO ME, THE WORD

4648
02:46:09,908 --> 02:46:13,611
THAT KEPT COMING TO MY MIND WAS

4649
02:46:13,611 --> 02:46:14,079
"UNCLUTTERED."

4650
02:46:14,079 --> 02:46:16,681
IT WAS JUST ACCESSIBLE BECAUSE

4651
02:46:16,681 --> 02:46:17,882
EVERYTHING IS VISIBLE ON THE

4652
02:46:17,882 --> 02:46:18,717
SITE.

4653
02:46:18,717 --> 02:46:19,417
SO THANK YOU.

4654
02:46:19,417 --> 02:46:22,721
>> THANK YOU FOR SAYING
THAT.

4655
02:46:22,721 --> 02:46:23,321
>> GREAT.

4656
02:46:23,321 --> 02:46:26,224
AND NOW WE'RE GOING TO HEAR A

4657
02:46:26,224 --> 02:46:29,527
PRESENTATION, REALLY AN UPDATE

4658
02:46:29,527 --> 02:46:32,864
ON THE UNDIAGNOSED DISEASES

4659
02:46:32,864 --> 02:46:35,600
PROGRAM FROM DR. WILLIAM GAHL.

4660
02:46:35,600 --> 02:46:39,971
>> THANKS FOR THE
OPPORTUNITY TO

4661
02:46:39,971 --> 02:46:41,072
SPEAK ABOUT THE UNDIAGNOSED

4662
02:46:41,072 --> 02:46:45,677
DISEASES PROGRAM.

4663
02:46:45,677 --> 02:46:47,946
AND SO I WANT TO MENTION, TOO,

4664
02:46:47,946 --> 02:46:49,814
THAT WE HAVE DIFFERENT PEOPLE

4665
02:46:49,814 --> 02:46:51,015
CONTRIBUTING TO THIS.

4666
02:46:51,015 --> 02:46:53,084
THE DIRECTOR OF THE PEDIATRIC

4667
02:46:53,084 --> 02:47:00,592
PORTION IS DR. TIFFT, DR. ADAMS,

4668
02:47:00,592 --> 02:47:02,627
DR. TORO AND DR. ACOSTA, A

4669
02:47:02,627 --> 02:47:07,565
COUPLE OF GREAT INTERNISTS,

4670
02:47:07,565 --> 02:47:13,204
DR. NOVACIC AND DR. ROSSIGNOL.

4671
02:47:13,204 --> 02:47:15,173
THERE ARE A LOT OF PEOPLE TO

4672
02:47:15,173 --> 02:47:17,342
THANK FOR THIS EXPANSION TO AN

4673
02:47:17,342 --> 02:47:18,076
EXTRAMURAL PROGRAM.

4674
02:47:18,076 --> 02:47:19,611
WHY DO WE HAVE AN UNDIAGNOSED

4675
02:47:19,611 --> 02:47:20,078
DISEASES PROGRAM?

4676
02:47:20,078 --> 02:47:22,080
WELL, THERE ARE ESTIMATED TO BE

4677
02:47:22,080 --> 02:47:22,947
25 MILLION PEOPLE IN THE UNITED

4678
02:47:22,947 --> 02:47:24,149
STATES WITH A RARE DISEASE.

4679
02:47:24,149 --> 02:47:26,451
THOSE PEOPLE TOOK A LONG TIME TO

4680
02:47:26,451 --> 02:47:27,418
GET THEIR DIAGNOSIS.

4681
02:47:27,418 --> 02:47:29,020
WE'D LIKE TO HASTEN THAT.

4682
02:47:29,020 --> 02:47:30,922
IN ADDITION, AROUND THE TIME OF

4683
02:47:30,922 --> 02:47:33,725
2007 OR SO, WHEN THIS STARTED,

4684
02:47:33,725 --> 02:47:35,426
IT ACTUALLY OFFICIALLY STARTED

4685
02:47:35,426 --> 02:47:38,730
IN 2008, BUT AT THAT TIME, 6% OF

4686
02:47:38,730 --> 02:47:39,998
ALL THE CALLS THAT CAME TO THE

4687
02:47:39,998 --> 02:47:41,366
OFFICE OF RARE DISEASES, WHICH

4688
02:47:41,366 --> 02:47:42,534
WAS IN THE OFFICE OF THE NIH

4689
02:47:42,534 --> 02:47:45,470
DIRECTOR AT THE TIME, WERE FROM

4690
02:47:45,470 --> 02:47:46,771
PEOPLE WHO DIDN'T HAVE A KNOWN

4691
02:47:46,771 --> 02:47:48,907
DIAGNOSIS OF A RARE DISEASE.

4692
02:47:48,907 --> 02:47:52,310
THEY WERE UNDIAGNOSED

4693
02:47:52,310 --> 02:47:52,877
ESSENTIALLY.

4694
02:47:52,877 --> 02:47:53,978
SO WE WANT TO HELP THOSE PEOPLE

4695
02:47:53,978 --> 02:47:55,814
COME TO A DIAGNOSIS, AND ALSO

4696
02:47:55,814 --> 02:47:57,115
BECAUSE WE'RE A RESEARCH

4697
02:47:57,115 --> 02:47:59,417
INSTITUTE AND WE'RE SCIENTISTS,

4698
02:47:59,417 --> 02:48:00,919
WE WANT TO DISCOVER NEW

4699
02:48:00,919 --> 02:48:03,354
DISEASES, NEW BIOCHEMISTRY, CELL

4700
02:48:03,354 --> 02:48:04,556
BIOLOGY, PHYSIOLOGY, ET CETERA.

4701
02:48:04,556 --> 02:48:07,926
SO THE WAY THIS PROGRAM WORKS IS

4702
02:48:07,926 --> 02:48:09,294
THAT APPLICANTS WILL SUBMIT

4703
02:48:09,294 --> 02:48:10,094
THEIR MEDICAL RECORDS AND ANYONE

4704
02:48:10,094 --> 02:48:14,532
CAN APPLY AND THERE'S A

4705
02:48:14,532 --> 02:48:16,734
REGISTRATION ONLINE SITE, AND

4706
02:48:16,734 --> 02:48:18,536
THE REFERRING PHYSICIAN SENDS A

4707
02:48:18,536 --> 02:48:20,004
SUMMARY LETTER AND THEN I FOR

4708
02:48:20,004 --> 02:48:21,940
THE ADULTS AND DR. TIFFT FOR THE

4709
02:48:21,940 --> 02:48:23,208
CHILDREN WILL LOOK AT THESE

4710
02:48:23,208 --> 02:48:25,076
RECORDS AND TRIAGE THEM TO OTHER

4711
02:48:25,076 --> 02:48:26,177
INTRAMURAL INVESTIGATORS WHO ARE

4712
02:48:26,177 --> 02:48:27,979
SPECIALISTS IN THE FIELD.

4713
02:48:27,979 --> 02:48:29,681
AND WE ACCEPT ABOUT ONE-THIRD OF

4714
02:48:29,681 --> 02:48:33,184
THE APPLICANTS, AND WE TURN DOWN

4715
02:48:33,184 --> 02:48:35,086
THE OTHERS WHO OFTEN GIVE ADVICE

4716
02:48:35,086 --> 02:48:36,855
TO THE OTHERS, BUT WHEN WE

4717
02:48:36,855 --> 02:48:38,156
ACCEPT A PATIENT, WE LARGELY

4718
02:48:38,156 --> 02:48:39,390
BRING THEM IN TO THE CLINICAL

4719
02:48:39,390 --> 02:48:41,593
CENTER AT NO COST TO THEM FOR

4720
02:48:41,593 --> 02:48:42,393
ONE WEEK, AND DURING THAT WEEK,

4721
02:48:42,393 --> 02:48:44,662
WE CAN GENERALLY GET DONE WHAT

4722
02:48:44,662 --> 02:48:46,364
TAKES MAYBE A YEAR OR TWO YEARS

4723
02:48:46,364 --> 02:48:47,398
ON THE OUTSIDE BECAUSE THERE'S

4724
02:48:47,398 --> 02:48:48,466
NO INSURANCE COSTS.

4725
02:48:48,466 --> 02:48:49,701
WE DON'T HAVE TO GET PERMISSION

4726
02:48:49,701 --> 02:48:51,603
TO DO THE NEXT OUTPATIENT MRI,

4727
02:48:51,603 --> 02:48:52,070
ET CETERA, ET CETERA.

4728
02:48:52,070 --> 02:48:53,571
SO IT'S REALLY AN INCREDIBLE

4729
02:48:53,571 --> 02:48:55,240
ADVANTAGE.

4730
02:48:55,240 --> 02:48:57,876
OVER THE YEARS, WE'VE HAD OVER

4731
02:48:57,876 --> 02:48:59,711
6,000 APPLICATIONS ACCEPTED AND

4732
02:48:59,711 --> 02:49:03,214
SEEN HERE OVER 1600 INDIVIDUALS.

4733
02:49:03,214 --> 02:49:04,482
A LOT OF CHILDREN.

4734
02:49:04,482 --> 02:49:07,318
A HUGE AMOUNT OF NEUROLOGY.

4735
02:49:07,318 --> 02:49:11,689
AND WE DO EXCELLENCE IN GENOMES,

4736
02:49:11,689 --> 02:49:13,224
LARGELY GENETICISTS, BUT PEOPLE

4737
02:49:13,224 --> 02:49:16,194
DON'T HAVE TO HAVE A GENETIC

4738
02:49:16,194 --> 02:49:17,562
DISEASE TO SEE US IN THIS

4739
02:49:17,562 --> 02:49:18,596
PROGRAM.

4740
02:49:18,596 --> 02:49:20,098
WE'VE MADE OVER 400 DIAGNOSES

4741
02:49:20,098 --> 02:49:22,901
AND HAVE A LOT OF PUBLICATIONS

4742
02:49:22,901 --> 02:49:26,170
AND MTAs, MATERIAL TRANSFER

4743
02:49:26,170 --> 02:49:27,038
AGREEMENTS WHICH MEANS WE'VE

4744
02:49:27,038 --> 02:49:28,573
SENT SPECIMENS FROM THESE

4745
02:49:28,573 --> 02:49:30,875
INDIVIDUALS WHO ARE SO WELL

4746
02:49:30,875 --> 02:49:33,278
PHENOTYPED WE'VE SENT SPECIMENS

4747
02:49:33,278 --> 02:49:35,313
IN A DE-IDENTIFIED FASHION

4748
02:49:35,313 --> 02:49:37,815
THROUGH OUR COLLABORATORS, WE

4749
02:49:37,815 --> 02:49:39,350
HAVE SOME PAPERS EVEN IN SOME

4750
02:49:39,350 --> 02:49:40,151
GOOD JOURNALS.

4751
02:49:40,151 --> 02:49:42,754
I USUALLY GIVE A LOT OF TALKS

4752
02:49:42,754 --> 02:49:44,255
ABOUT NUMBERS, ET CETERA, AND

4753
02:49:44,255 --> 02:49:45,757
THAT'S A BURDEN, BUT IT'S NOT A

4754
02:49:45,757 --> 02:49:46,324
BURDEN TO TALK ABOUT THE

4755
02:49:46,324 --> 02:49:47,525
PARTICULAR CASES BECAUSE THEY'RE

4756
02:49:47,525 --> 02:49:49,060
SO INTERESTING AND FASCINATING,

4757
02:49:49,060 --> 02:49:50,228
AT LEAST TO ME.

4758
02:49:50,228 --> 02:49:51,596
SO WE SAW FIVE ADULTS WHO ARE

4759
02:49:51,596 --> 02:49:56,167
FROM THE KENTUCKY, OHIO REGION,

4760
02:49:56,167 --> 02:49:57,368
AND THEIR SIBLINGS, MAYBE IN

4761
02:49:57,368 --> 02:49:58,870
THEIR 50s OR SO, AND THEY HAD

4762
02:49:58,870 --> 02:50:00,872
CLAUDICATION IN THEIR LOWER

4763
02:50:00,872 --> 02:50:02,106
EXTREMITIES WITH ISCHEMIC PAIN

4764
02:50:02,106 --> 02:50:04,042
IN THEIR FEET AND JOINT PAIN AS

4765
02:50:04,042 --> 02:50:05,076
WELL IN THEIR HANDS.

4766
02:50:05,076 --> 02:50:09,347
AND I'LL SHOW YOU THE PICTURE OF

4767
02:50:09,347 --> 02:50:13,685
THEIR FAMILIAR RA FEMORAL AND PL

4768
02:50:13,685 --> 02:50:18,489
ARTERIES.

4769
02:50:18,489 --> 02:50:19,691
THIS IS NOT CONTRAST.

4770
02:50:19,691 --> 02:50:23,761
THIS IS JUST THEIR DILATED

4771
02:50:23,761 --> 02:50:25,396
ARTERIES, AND IT EXPLAINS WHY

4772
02:50:25,396 --> 02:50:27,332
THEY HAVE CLAUDICATION.

4773
02:50:27,332 --> 02:50:29,834
HERE'S A PA VIEW.

4774
02:50:29,834 --> 02:50:33,004
HERE'S THE DORSALS PEDIS.

4775
02:50:33,004 --> 02:50:38,776
AND THEY ALSO HAD THIS

4776
02:50:38,776 --> 02:50:40,545
CALCIFICATION -- WHERE -- RIGHT

4777
02:50:40,545 --> 02:50:43,581
ABOUT HERE IN THEIR JOINTS,

4778
02:50:43,581 --> 02:50:47,618
THEIR META CARPAL PHALANGEAL

4779
02:50:47,618 --> 02:50:48,052
JOINT.

4780
02:50:48,052 --> 02:50:50,355
WELL, WE DID A SNP ARRAY

4781
02:50:50,355 --> 02:50:51,622
ANALYSIS BECAUSE WE KNEW THE

4782
02:50:51,622 --> 02:50:52,657
PARENTS WERE THIRD COUSINS.

4783
02:50:52,657 --> 02:50:54,425
YOU KNOW THAT FIRST COUSINS

4784
02:50:54,425 --> 02:50:55,727
SHARE ONE EIGHTH OF THEIR GENES

4785
02:50:55,727 --> 02:50:59,397
AND SECOND COUSINS SHARE 1/32 OF

4786
02:50:59,397 --> 02:51:03,801
THEIR GENES AND THIRD COUSINS

4787
02:51:03,801 --> 02:51:05,937
SHARE 1/128 OF THEIR GENES.

4788
02:51:05,937 --> 02:51:08,573
IF YOU FIND A REGION OF

4789
02:51:08,573 --> 02:51:09,941
HOMOZYGOSITY, IT'S AXIOMATIC, IF

4790
02:51:09,941 --> 02:51:11,709
YOU HAVE ONE VARIANT OR

4791
02:51:11,709 --> 02:51:14,178
POTENTIAL MUTATION IN ONE OF THE

4792
02:51:14,178 --> 02:51:15,613
COPIES OF THE GENE, NAMELY ONE

4793
02:51:15,613 --> 02:51:17,348
ALLELE, YOU WILL HAVE IT IN BOTH

4794
02:51:17,348 --> 02:51:18,649
ALLELES BECAUSE THEY'RE

4795
02:51:18,649 --> 02:51:20,385
HOMOZYGOUS IN THAT REGION, SORT

4796
02:51:20,385 --> 02:51:23,988
OF BY DEFINITION.

4797
02:51:23,988 --> 02:51:24,522
THE 3.2 BILLION BASES AND

4798
02:51:24,522 --> 02:51:25,623
COMPANIES WHO WHO HAVE PICKED

4799
02:51:25,623 --> 02:51:28,126
OUT THOSE BASES ARE WHAT THEY

4800
02:51:28,126 --> 02:51:29,761
CALL POLYMORPHIC.

4801
02:51:29,761 --> 02:51:32,630
THEY'RE POLYMORPHIC IN A RATIO

4802
02:51:32,630 --> 02:51:36,134
OF 60/40, 70/30 OR SOMETHING OF

4803
02:51:36,134 --> 02:51:37,735
THAT SORT SO THAT PEOPLE WILL

4804
02:51:37,735 --> 02:51:38,870
HAVE COMMONLY EITHER AN A OR A C

4805
02:51:38,870 --> 02:51:42,340
OR A T OR A G OR ONE OR THE

4806
02:51:42,340 --> 02:51:43,107
OTHER IN THAT PARTICULAR

4807
02:51:43,107 --> 02:51:44,075
LOCATION.

4808
02:51:44,075 --> 02:51:47,979
AND THEY CONSIDER THESE AS HAV

4809
02:51:47,979 --> 02:51:49,414
HAVING AA IF THEY'RE HOMOZYGOUS

4810
02:51:49,414 --> 02:51:51,482
FOR THE MORE COMMON ALLELE, BB

4811
02:51:51,482 --> 02:51:52,683
IF THEY'RE HOMOZYGOUS FOR THE

4812
02:51:52,683 --> 02:51:54,886
LESS COMMON ALLELE, AND AB IF

4813
02:51:54,886 --> 02:51:57,388
THEY'RE HETEROZYGOUS.

4814
02:51:57,388 --> 02:52:02,093
THIS IS A PICTURE OF CHROMOSOME

4815
02:52:02,093 --> 02:52:06,330
6 IN WHICH EACH DOT IS ONE OF

4816
02:52:06,330 --> 02:52:10,068
THOSE SNPs, SINGLE NUCLEOTIDE

4817
02:52:10,068 --> 02:52:10,401
POLYMORPHISM.

4818
02:52:10,401 --> 02:52:12,670
EACH DOT ON AVERAGE IS ABOUT

4819
02:52:12,670 --> 02:52:13,104
3,000 BASES APART.

4820
02:52:13,104 --> 02:52:14,338
SO THIS COVERS A LOT OF GROUND

4821
02:52:14,338 --> 02:52:16,074
RIGHT HERE.

4822
02:52:16,074 --> 02:52:17,575
AND EVERY ONES OF THESE DOTS IS

4823
02:52:17,575 --> 02:52:18,009
THE AB.

4824
02:52:18,009 --> 02:52:21,846
IN OTHER WORDS, THE HETEROZY 

4825
02:52:21,846 --> 02:52:22,180
HETEROZYGOUS.

4826
02:52:22,180 --> 02:52:23,815
AND THIS, THE TOP IS FOR THE

4827
02:52:23,815 --> 02:52:26,017
MOTHER, THE NEXT ONE IS FOR THE

4828
02:52:26,017 --> 02:52:27,185
FATHER, AND THESE ARE FOR THE

4829
02:52:27,185 --> 02:52:28,453
CHILDREN.

4830
02:52:28,453 --> 02:52:29,720
THAT WILL ALL AFFECTED.

4831
02:52:29,720 --> 02:52:34,625
AND THIS ONE REGION HAS NO

4832
02:52:34,625 --> 02:52:35,426
HETEROZYGOSITY.

4833
02:52:35,426 --> 02:52:36,928
IT MEANS THEY'RE ALL HOMOZYGOUS.

4834
02:52:36,928 --> 02:52:38,896
THIS IS A REGION THAT WE SHOULD

4835
02:52:38,896 --> 02:52:40,164
LOOK FOR A VARIANT BECAUSE WE

4836
02:52:40,164 --> 02:52:41,833
KNOW IT'S GOING TO BE HOMOZYGOUS

4837
02:52:41,833 --> 02:52:42,800
IN THAT REGION.

4838
02:52:42,800 --> 02:52:45,336
WELL, THERE WAS A VARIANT IN

4839
02:52:45,336 --> 02:52:46,537
THIS 22 MEGA BASE REGION, THERE

4840
02:52:46,537 --> 02:52:49,006
WERE 92 GENES, AND OUR HEART,

4841
02:52:49,006 --> 02:52:54,745
LUNG AND BLOOD SOACIALG SOARVEGD

4842
02:52:54,745 --> 02:52:57,115
AT THE GENE AND SAID NT5E MIGHT

4843
02:52:57,115 --> 02:52:58,850
BE SOMETHING FOR YOU TO LOOK AT,

4844
02:52:58,850 --> 02:53:03,221
IT ENCODES CD73, DEGRADES AMP TO

4845
02:53:03,221 --> 02:53:04,422
ADENOSINE AND INORGANIC

4846
02:53:04,422 --> 02:53:04,789
PHOSPHATE.

4847
02:53:04,789 --> 02:53:06,691
SO WE LOOKED THERE FOR VARIANTS,

4848
02:53:06,691 --> 02:53:10,795
AND IT TURNS OUT THAT OUR FAMILY

4849
02:53:10,795 --> 02:53:12,163
HAD -- I GUESS I CAN DO IT ON

4850
02:53:12,163 --> 02:53:12,964
HERE TOO.

4851
02:53:12,964 --> 02:53:14,265
YEAH THAT, WORKS.

4852
02:53:14,265 --> 02:53:24,275
OUR FAMILY, WHICH YOU SEE HAD

4853
02:53:24,275 --> 02:53:25,910
HOMOZYGOUS ARE -- THE THIRD

4854
02:53:25,910 --> 02:53:27,645
FAMILY WAS COMPOUND

4855
02:53:27,645 --> 02:53:28,012
HETEROZYGOUS.

4856
02:53:28,012 --> 02:53:31,616
SO WHAT IS IT, NINE INDIVIDUALS

4857
02:53:31,616 --> 02:53:34,652
IN THREE FAMILIES ALL WITH

4858
02:53:34,652 --> 02:53:35,753
BIALLELIC LOSS OF FUNCTION

4859
02:53:35,753 --> 02:53:37,755
MUTATIONS IN THIS PARTICULAR

4860
02:53:37,755 --> 02:53:38,789
GENE INDICATING THAT THIS IS

4861
02:53:38,789 --> 02:53:39,824
LIKELY TO BE THE CAUSE OF THE

4862
02:53:39,824 --> 02:53:42,226
DISORDER.

4863
02:53:42,226 --> 02:53:45,029
WE ALSO, BECAUSE WE COLLECT SKIN

4864
02:53:45,029 --> 02:53:47,331
FIBROBLASTS AND GROW THEIR CELLS

4865
02:53:47,331 --> 02:53:48,966
ON ABOUT 70% OF OUR PATIENTS, WE

4866
02:53:48,966 --> 02:53:53,337
ALSO HAD THE SKIN CELLS OR

4867
02:53:53,337 --> 02:53:54,739
FIBROBLASTS IN CULTURE AND THEY

4868
02:53:54,739 --> 02:53:55,406
EXPRESSED THE GENE.

4869
02:53:55,406 --> 02:53:56,908
YOU CAN SEE HERE THE EXPRESSION

4870
02:53:56,908 --> 02:53:59,410
OF THE NT5E WAS VERY LOW IN THE

4871
02:53:59,410 --> 02:54:00,478
TWO AFFECTED INDIVIDUALS

4872
02:54:00,478 --> 02:54:03,748
COMPARED TO THE CONTROLS.

4873
02:54:03,748 --> 02:54:05,983
THE ENZYME ACTIVITY WAS VERY

4874
02:54:05,983 --> 02:54:08,186
LOW, WE MEASURED THAT AS WELL IN

4875
02:54:08,186 --> 02:54:17,962
THE LAB OF DR. MANFRED BAUM, DRD

4876
02:54:17,962 --> 02:54:19,130
THIS BY TRANSDUCTION WITH A

4877
02:54:19,130 --> 02:54:21,265
VECTOR THAT CONTAINS CD73 AND

4878
02:54:21,265 --> 02:54:25,369
GOT BACK THE ENZYMATIC ACTIVITY.

4879
02:54:25,369 --> 02:54:27,905
IN ADDITION, THESE FIBROBLASTS

4880
02:54:27,905 --> 02:54:28,539
EXPRESSED A PHENOTYPE.

4881
02:54:28,539 --> 02:54:32,243
AND THE PHENOTYPE WAS INCREASED

4882
02:54:32,243 --> 02:54:33,444
ALKALINE PHOSPHATASE ACTIVITY.

4883
02:54:33,444 --> 02:54:37,248
SO HERE'S A STAIN FOR ALKALINE

4884
02:54:37,248 --> 02:54:40,618
PHOSPHATASE IN THE INAFFECTED

4885
02:54:40,618 --> 02:54:41,953
CELLS COMPARED TO CONTROL.

4886
02:54:41,953 --> 02:54:44,155
THE AMOUNT OF THAT ALKALINE

4887
02:54:44,155 --> 02:54:45,456
PHOSPHATASE WAS REDUCED OR

4888
02:54:45,456 --> 02:54:48,059
MITIGATED BY GIVING ADENOSINE.

4889
02:54:48,059 --> 02:54:51,796
ADENOSINE THE PRODUCT OF THE

4890
02:54:51,796 --> 02:54:55,499
ENZYME THEAZ MISSING.

4891
02:54:55,499 --> 02:54:56,567
ENZYME THAT'S MISSING.

4892
02:54:56,567 --> 02:54:58,669
NOT ONLY WAS THERE A PHENOTYPE

4893
02:54:58,669 --> 02:55:00,972
OF INCREASED PHOSPHATASE

4894
02:55:00,972 --> 02:55:01,606
ACTIVITY, THERE'S ALSO A

4895
02:55:01,606 --> 02:55:03,007
PHENOTYPE IN THESE CELLS OF

4896
02:55:03,007 --> 02:55:03,674
INCREASED CALCIFICATION.

4897
02:55:03,674 --> 02:55:08,012
AND THIS I IS A RED STAIN THAT

4898
02:55:08,012 --> 02:55:10,715
SHOWS THE CALCIFICATION OF THE

4899
02:55:10,715 --> 02:55:15,019
PATIENT'S CELLS COMPARED TO THE

4900
02:55:15,019 --> 02:55:17,555
CONTROL WHEN YOU TRANSDUCE WITH

4901
02:55:17,555 --> 02:55:19,190
A CONTROL LENTIVIRUS THAT HAS

4902
02:55:19,190 --> 02:55:20,091
NOTHING IN IT, YOU STILL HAVE

4903
02:55:20,091 --> 02:55:22,727
THE RED, SO CALCIFICATION.

4904
02:55:22,727 --> 02:55:24,829
IF YOU TRANSDUCE WITH THE

4905
02:55:24,829 --> 02:55:26,797
LENTIVIRUS THAT HAS CD73 IN IT,

4906
02:55:26,797 --> 02:55:28,232
YOU RESCUE IT, YOU ALSO RESCUE

4907
02:55:28,232 --> 02:55:33,204
IT WITH ADENOSINE, AND WITH

4908
02:55:33,204 --> 02:55:36,774
LEVAMISOLE, AN ALFIN PHOSPHATASE

4909
02:55:36,774 --> 02:55:37,074
INHIBITOR.

4910
02:55:37,074 --> 02:55:38,776
SO IS THIS THE EXPLANATION FOR

4911
02:55:38,776 --> 02:55:41,212
WHY THESE INDIVIDUALS HAVE LOWER

4912
02:55:41,212 --> 02:55:43,347
EXTREMITY A ARTERIAL

4913
02:55:43,347 --> 02:55:43,681
CALCIFICATION.

4914
02:55:43,681 --> 02:55:46,050
AND THE EXPLANATION IS THAT

4915
02:55:46,050 --> 02:55:51,155
THERE ARE -- THERE'S A PURINE

4916
02:55:51,155 --> 02:55:53,257
ENZYMATIC PATHWAY ON THE SURFACE

4917
02:55:53,257 --> 02:55:54,659
OF THE VASCULAR ENDOTHELIAL

4918
02:55:54,659 --> 02:55:56,827
CELLS THAT INCLUDES

4919
02:55:56,827 --> 02:55:58,629
CD73 CONVERTING AMP TO ADENOSINE

4920
02:55:58,629 --> 02:55:59,897
AND INORGANIC PHOSPHATE.

4921
02:55:59,897 --> 02:56:01,198
NORMALLY THE ADENOSINE REACTS

4922
02:56:01,198 --> 02:56:03,768
WITH ADENOSINE RECEPTORS AT THE

4923
02:56:03,768 --> 02:56:06,370
CELL SURFACE, WHICH CAUSE

4924
02:56:06,370 --> 02:56:08,105
INTRACELLULAR SIGNALING THAT

4925
02:56:08,105 --> 02:56:10,508
TROPHICALLY INHIBITS TISSUE

4926
02:56:10,508 --> 02:56:11,809
NONSPECIFIC ALKALINE

4927
02:56:11,809 --> 02:56:12,109
PHOSPHATASE.

4928
02:56:12,109 --> 02:56:12,910
WHEN THAT DOESN'T OCCUR BECAUSE

4929
02:56:12,910 --> 02:56:14,378
YOU'RE NOT PRODUCING THE

4930
02:56:14,378 --> 02:56:15,646
ADENOSINE, BECAUSE THIS IS

4931
02:56:15,646 --> 02:56:21,252
MISSING, THEN YOU HAVE INCREASED

4932
02:56:21,252 --> 02:56:22,853
ALFIN PHOSPHATASE THAT GOES TO

4933
02:56:22,853 --> 02:56:25,489
THE OUTSIDE OF THE CELL AND IT

4934
02:56:25,489 --> 02:56:26,824
CONVERTS PYRO PHOSPHATE TO

4935
02:56:26,824 --> 02:56:29,894
INORGANIC PHOSPHATE.

4936
02:56:29,894 --> 02:56:32,196
PYRO PHOSPHATE INHIBITS

4937
02:56:32,196 --> 02:56:33,631
CALCIFICATION, INORGANIC

4938
02:56:33,631 --> 02:56:34,732
PHOSPHATE STIMULATES IT.

4939
02:56:34,732 --> 02:56:35,566
INCIDENTALLY, THERE'S ANOTHER

4940
02:56:35,566 --> 02:56:37,268
DISEASE THAT WE'RE SORT OF

4941
02:56:37,268 --> 02:56:40,371
STUDYING TOO, ENPP1 DEFICIENCY,

4942
02:56:40,371 --> 02:56:44,475
THIS CAUSES GENERALIZED ARTERIAL

4943
02:56:44,475 --> 02:56:46,210
CALCIFICATION OF INFANCY, FATAL

4944
02:56:46,210 --> 02:56:47,645
IN THE FIRST SIX MONTHS OF LIFE

4945
02:56:47,645 --> 02:56:48,279
GENERALLY.

4946
02:56:48,279 --> 02:56:50,281
SO WE CALL THIS DISEASE ARTERIAL

4947
02:56:50,281 --> 02:56:55,953
CALCIFICATION DUE TO CD73, WHICH

4948
02:56:55,953 --> 02:56:58,823
WE CALL AC/DC, WHICH

4949
02:56:58,823 --> 02:56:59,757
INCIDENTALLY THE NEW ENGLAND

4950
02:56:59,757 --> 02:57:00,725
JOURNAL DID NOT WANT, BUT WHEN

4951
02:57:00,725 --> 02:57:01,859
YOU SUBMIT SOMETHING LIKE THAT

4952
02:57:01,859 --> 02:57:04,829
AND THEY OBJECT, FINE, EVERY

4953
02:57:04,829 --> 02:57:07,665
SUBSEQUENT PUBLICATION IS AC/DC,

4954
02:57:07,665 --> 02:57:08,799
THAT'S JUST THE NEW ENGLAND

4955
02:57:08,799 --> 02:57:09,734
JOURNAL THAT DOESN'T ALLOW IT.

4956
02:57:09,734 --> 02:57:10,034
OKAY.

4957
02:57:10,034 --> 02:57:12,002
SO THAT'S A NEW DISEASE.

4958
02:57:12,002 --> 02:57:13,371
THIS DIDN'T LINE UP SO GREAT BUT

4959
02:57:13,371 --> 02:57:15,639
IT DOESN'T MATTER, YOU CAN SEE

4960
02:57:15,639 --> 02:57:17,074
IT.

4961
02:57:17,074 --> 02:57:19,009
WE HAVE SINCE MADE ABOUT 30 NEW

4962
02:57:19,009 --> 02:57:20,644
DISEASE DISCOVERIES, THAT IS TO

4963
02:57:20,644 --> 02:57:24,315
SAY A PHENOTYPE THAT'S UNIQUE,

4964
02:57:24,315 --> 02:57:26,550
AND THEN A GENE WHOSE VARIANTS

4965
02:57:26,550 --> 02:57:32,857
ARE CONSIDERED CAUSAL BECAUSE WE

4966
02:57:32,857 --> 02:57:33,457
FOUND THAT ASSOCIATION IN MORE

4967
02:57:33,457 --> 02:57:33,824
THAN ONE FAMILY.

4968
02:57:33,824 --> 02:57:35,192
OF COURSE THESE THINGS ARE ALL

4969
02:57:35,192 --> 02:57:35,493
PUBLISHED.

4970
02:57:35,493 --> 02:57:38,729
YOU HAVE IT TO HAVE TWO FAMILIES

4971
02:57:38,729 --> 02:57:39,530
IN ORDER TO HAVE IT PUBLISHED,

4972
02:57:39,530 --> 02:57:40,998
BUT YOU CAN SEE THIS IS A BUNCH

4973
02:57:40,998 --> 02:57:42,600
OF THEM, THIS IS A BUNCH OF

4974
02:57:42,600 --> 02:57:43,000
OTHER ONES.

4975
02:57:43,000 --> 02:57:44,335
AND JUST IN THE LAST TWO YEARS,

4976
02:57:44,335 --> 02:57:47,772
WE'VE MADE THESE DISCOVERIES AND

4977
02:57:47,772 --> 02:57:49,240
PUT IT IN THESE JOURNALS.

4978
02:57:49,240 --> 02:57:50,674
A COUPLE OF THEM ARE STILL SORT

4979
02:57:50,674 --> 02:57:53,611
OF PENDING, ET CETERA.

4980
02:57:53,611 --> 02:57:55,780
WE'VE ALSO MADE A LOT OF

4981
02:57:55,780 --> 02:57:56,313
DIAGNOSES AS I MENTIONED.

4982
02:57:56,313 --> 02:57:57,782
AND I HAVE A BUNCH OF SLIDES

4983
02:57:57,782 --> 02:57:59,216
HERE THAT I'M GOING TO GO THREUM

4984
02:57:59,216 --> 02:58:02,253
VERY RAPIDLY.

4985
02:58:02,253 --> 02:58:03,020
VERY RARE DIAGNOSES.

4986
02:58:03,020 --> 02:58:03,954
SO MAYBE YOU'VE NEVER HEARD OF

4987
02:58:03,954 --> 02:58:07,925
SOME OF THESE THINGS.

4988
02:58:07,925 --> 02:58:08,993
HERE'S ONE, ONLY THE SECOND AND

4989
02:58:08,993 --> 02:58:09,927
THIRD CASES IN THE WORLD.

4990
02:58:09,927 --> 02:58:11,228
FIRST CASE IN THE UNITED STATES.

4991
02:58:11,228 --> 02:58:13,164
ET CETERA.

4992
02:58:13,164 --> 02:58:14,165
, ET CETERA.

4993
02:58:14,165 --> 02:58:15,466
SOME RECENT DIAGNOSES.

4994
02:58:15,466 --> 02:58:16,333
SOME OF THESE, YOU'LL RECOGNIZE,

4995
02:58:16,333 --> 02:58:18,002
BUT I GENERALLY SAY BECAUSE I

4996
02:58:18,002 --> 02:58:20,404
GIVE THIS TALK TO GENETICISTS

4997
02:58:20,404 --> 02:58:24,809
AND MEDICAL STUDENTS, IT'S

4998
02:58:24,809 --> 02:58:25,743
ALWAYS A DIFFERENT TALK A LITTLE

4999
02:58:25,743 --> 02:58:27,378
BIT, BUT I SAY IF YOU KNOW MOST

5000
02:58:27,378 --> 02:58:28,846
OF THESE DISEASES, YOU NEED TO

5001
02:58:28,846 --> 02:58:29,547
GET A LIFE.

5002
02:58:29,547 --> 02:58:31,749
THESE ARE REALLY RARE, UNUSUAL

5003
02:58:31,749 --> 02:58:36,787
THINGS.

5004
02:58:36,787 --> 02:58:37,388
OKAY, FINE.

5005
02:58:37,388 --> 02:58:38,556
THEN I'M GOING TO GIVE YOU A

5006
02:58:38,556 --> 02:58:39,657
COUPLE EXAMPLES OF WHERE WE

5007
02:58:39,657 --> 02:58:40,224
ACTUALLY HELP PEOPLE.

5008
02:58:40,224 --> 02:58:42,726
SO I WOULD SAY THAT WE PRETTY

5009
02:58:42,726 --> 02:58:45,663
MUCH ALWAYS HELP PEOPLE BECAUSE

5010
02:58:45,663 --> 02:58:48,866
WHEN MAKING A DIAGNOSIS, THEY

5011
02:58:48,866 --> 02:58:51,936
NOW HAVE -- THEY DON'T HAVE TO

5012
02:58:51,936 --> 02:58:53,237
SEARCH ANYMORE FOR ONE THING.

5013
02:58:53,237 --> 02:58:54,338
SOMETIMES THEY HAVE A THERAPY,

5014
02:58:54,338 --> 02:58:56,874
SOMETIMES THEY HAVE A PROGNOSIS

5015
02:58:56,874 --> 02:58:59,043
THAT'S ASSOCIATED WITH IT.

5016
02:58:59,043 --> 02:59:00,444
AND THEY'RE GIVEN A LOT MORE

5017
02:59:00,444 --> 02:59:01,679
CREDIBILITY WHEN THEY CAN PUT A

5018
02:59:01,679 --> 02:59:03,113
NAME ON THE PARTICULAR DISORDER

5019
02:59:03,113 --> 02:59:05,983
THAT THEY HAVE.

5020
02:59:05,983 --> 02:59:07,451
SO THERE'S BENEFIT FOR EVERYONE,

5021
02:59:07,451 --> 02:59:08,385
BUT HERE ARE A COUPLE OF

5022
02:59:08,385 --> 02:59:09,753
EXAMPLES WHERE THERE'S SOME

5023
02:59:09,753 --> 02:59:10,955
INCREASED BENEFIT.

5024
02:59:10,955 --> 02:59:12,456
14-YEAR-OLD YOUNG LADY FROM NIGH

5025
02:59:12,456 --> 02:59:17,595
JEERL YA WHO HAD GENU VALGUM,

5026
02:59:17,595 --> 02:59:19,763
POOR WALKING, GROWTH DELAY,

5027
02:59:19,763 --> 02:59:20,331
FRACTURES, ESSENTIALLY.

5028
02:59:20,331 --> 02:59:22,066
AND THEY MADE A DIAGNOSIS OF

5029
02:59:22,066 --> 02:59:23,467
RICKETS AND TREATED HER WITH

5030
02:59:23,467 --> 02:59:25,903
SURGERY AND WITH VITAMIN D.

5031
02:59:25,903 --> 02:59:29,540
HERE ARE SOME OF HER FRACTURES.

5032
02:59:29,540 --> 02:59:30,641
WE DIDN'T SEE THIS PATIENT

5033
02:59:30,641 --> 02:59:32,810
ACTUALLY BUT WE SAW ALL THE

5034
02:59:32,810 --> 02:59:34,245
STUFF WHEN WE CONSENTED THE

5035
02:59:34,245 --> 02:59:36,514
PERSON AND I GOT THE DNA, ET

5036
02:59:36,514 --> 02:59:36,981
CETERA.

5037
02:59:36,981 --> 02:59:40,351
YOU'LL SEE.

5038
02:59:40,351 --> 02:59:42,319
HERE SHE IS, SHE SPENT A LARGE

5039
02:59:42,319 --> 02:59:45,956
PORTION OF HER LIFE IN CASTS.

5040
02:59:45,956 --> 02:59:47,258
SO THERE'S A DIFFERENTIAL

5041
02:59:47,258 --> 02:59:48,792
DIAGNOSIS, VITAMIN D DEFICIENCY.

5042
02:59:48,792 --> 02:59:50,194
NOT GOING TO LIKELY BE THAT

5043
02:59:50,194 --> 02:59:51,495
BECAUSE SHE WAS ALREADY TREATED

5044
02:59:51,495 --> 02:59:54,431
WITH VITAMIN D.

5045
02:59:54,431 --> 03:00:03,307
HYPOFOSHYPOPHOSPHATEMIA, METABOC

5046
03:00:03,307 --> 03:00:03,841
ACIDOSIS.

5047
03:00:03,841 --> 03:00:07,044
SHE HAD LOW SERUM BICARB AND LOW

5048
03:00:07,044 --> 03:00:07,344
POTASSIUM.

5049
03:00:07,344 --> 03:00:09,213
SO WE DID A GEE NOASM AND FOUND

5050
03:00:09,213 --> 03:00:12,283
A PATHOGENIC VARIANT IN SLC4A1.

5051
03:00:12,283 --> 03:00:15,452
ANY GENE THAT'S GOT AN SLC IN IT

5052
03:00:15,452 --> 03:00:19,189
MEANS IT'S A TRANSPORTER, EITHER

5053
03:00:19,189 --> 03:00:22,760
AT THE PLASMA MEMBRANE, SO THIS

5054
03:00:22,760 --> 03:00:23,994
IS A TRANSPORTER AND IT'S A

5055
03:00:23,994 --> 03:00:25,396
KNOWN CAUSE OF METABOLIC

5056
03:00:25,396 --> 03:00:26,263
ACIDOSIS.

5057
03:00:26,263 --> 03:00:28,566
NAMELY, RENAL TUBULAR ACIDOSIS.

5058
03:00:28,566 --> 03:00:30,301
WHICH IS A KNOWN CAUSE OF

5059
03:00:30,301 --> 03:00:30,568
RICKETS.

5060
03:00:30,568 --> 03:00:33,737
SO THE TREATMENT IS ALKALI WITH

5061
03:00:33,737 --> 03:00:35,673
BICARBONATE OR CITRATE PLUS

5062
03:00:35,673 --> 03:00:38,075
POTASSIUM BECAUSE THIS IS THE

5063
03:00:38,075 --> 03:00:38,909
CHLORIDE BICARBONATE EXCHANGER

5064
03:00:38,909 --> 03:00:40,578
IN THE DISTAL TUBULE.

5065
03:00:40,578 --> 03:00:43,547
SO SHE'S BEING TREATED NOW IN

5066
03:00:43,547 --> 03:00:45,282
NIGERIA.

5067
03:00:45,282 --> 03:00:49,019
SECOND CASE I'LL SHOW YOU IS A

5068
03:00:49,019 --> 03:00:50,020
27-YEAR-OLD WOMAN WHO HAD

5069
03:00:50,020 --> 03:00:50,654
DYSTONIA.

5070
03:00:50,654 --> 03:00:53,290
SHE HELD HER PEN IN GRADE SCHOOL

5071
03:00:53,290 --> 03:00:53,924
LIKE THIS.

5072
03:00:53,924 --> 03:00:55,793
AND YOU KNOW HOW TEACHERS GET

5073
03:00:55,793 --> 03:00:57,428
MAD AT YOU WHEN YOU DO THAT?

5074
03:00:57,428 --> 03:00:58,963
AND THEY SAY HOLD YOUR PEN

5075
03:00:58,963 --> 03:01:00,264
PROPERLY, ET CETERA, ET CETERA.

5076
03:01:00,264 --> 03:01:01,398
SHE COULDN'T HELP IT.

5077
03:01:01,398 --> 03:01:02,900
SHE HAD DYSTONIA.

5078
03:01:02,900 --> 03:01:05,002
AND LATER SHE HAD GAIT

5079
03:01:05,002 --> 03:01:08,138
ABNORMALITIES, AND ALSO,

5080
03:01:08,138 --> 03:01:08,939
INVOLUNTARY TONGUE MOVEMENT

5081
03:01:08,939 --> 03:01:10,641
WHICH SHE COULD NOT CONTROL.

5082
03:01:10,641 --> 03:01:11,842
AND THAT AFFECTED HER SPEECH AND

5083
03:01:11,842 --> 03:01:13,577
HER SWALLOWING, AND HER

5084
03:01:13,577 --> 03:01:14,578
NUTRITION.

5085
03:01:14,578 --> 03:01:19,717
AND WHEN SHE CAME TO US, SHE WAS

5086
03:01:19,717 --> 03:01:20,484
ABOUT 82 POUNDS OR SOMETHING OF

5087
03:01:20,484 --> 03:01:21,352
THAT SORT.

5088
03:01:21,352 --> 03:01:24,088
SHE JUST COULDN'T EAT.

5089
03:01:24,088 --> 03:01:26,323
WE FOUND SHE HAD A HETEROZYGOUS

5090
03:01:26,323 --> 03:01:28,492
KM T2 B VARIANT AND THIS ENCODES

5091
03:01:28,492 --> 03:01:29,560
A METHYL TRANS PHRASE, SO IT'S

5092
03:01:29,560 --> 03:01:32,196
GOING TO HAVE SOME EPIGENETIC

5093
03:01:32,196 --> 03:01:35,899
EFFECTS AND SOME METHYLATION

5094
03:01:35,899 --> 03:01:36,734
EFFECTS ON EXPRESSION, ET

5095
03:01:36,734 --> 03:01:37,001
CETERA.

5096
03:01:37,001 --> 03:01:39,970
BUT NOT ASSOCIATED WITH A KNOWN

5097
03:01:39,970 --> 03:01:40,704
DISEASE.

5098
03:01:40,704 --> 03:01:43,407
THIS IS A WHILE AGO, I DON'T

5099
03:01:43,407 --> 03:01:45,075
KNOW, MAYBE EIGHT YEARS AGO OR

5100
03:01:45,075 --> 03:01:49,880
SO, BUT WE WERE PUTTING THE

5101
03:01:49,880 --> 03:01:50,614
VARIANTS OR I WOULD SAY THE

5102
03:01:50,614 --> 03:01:53,450
GENES THAT WE HAD VARIANTS IN

5103
03:01:53,450 --> 03:01:56,286
THAT WE KNEW WERE ASSOCIATED,

5104
03:01:56,286 --> 03:01:58,722
LIKELY ASSOCIATED WITH A NEW

5105
03:01:58,722 --> 03:02:01,692
DISEASE, WE WERE PUTTING THAT ON

5106
03:02:01,692 --> 03:02:02,259
OUR WEBSITE.

5107
03:02:02,259 --> 03:02:04,862
WHEN WE DID THAT, I ONE DAY GOT

5108
03:02:04,862 --> 03:02:10,668
A CALL FROM DR. MANJU KURIAN WHO

5109
03:02:10,668 --> 03:02:12,202
RUNS A DYSTONIA CLINIC IN

5110
03:02:12,202 --> 03:02:13,637
LONDON, AND SHE SAID I NOTICED

5111
03:02:13,637 --> 03:02:17,908
KM T2 B ON YOUR WEBSITE.

5112
03:02:17,908 --> 03:02:20,010
AND I HAVE THREE PATIENTS WHO

5113
03:02:20,010 --> 03:02:23,147
HAVE KMT2B VARIANTS.

5114
03:02:23,147 --> 03:02:24,481
THEY ALL HAVE DYSTONIA, JUST

5115
03:02:24,481 --> 03:02:25,683
LIKE YOUR PATIENT, AND THEY

5116
03:02:25,683 --> 03:02:26,750
RESPONDED TO DEEP BRAIN

5117
03:02:26,750 --> 03:02:29,787
STIMULATION.

5118
03:02:29,787 --> 03:02:31,088
AND THEN WE WERE COLLABORATORS

5119
03:02:31,088 --> 03:02:33,824
WITH HER IN SOME RESPECTS.

5120
03:02:33,824 --> 03:02:37,528
LATER, WE SAW ANOTHER PATIENT

5121
03:02:37,528 --> 03:02:41,699
WITH DYSTONIA, DR. ARIANA

5122
03:02:41,699 --> 03:02:43,233
SOLDATOS SAW THIS PATIENT, AND

5123
03:02:43,233 --> 03:02:45,002
AGAIN TOE WALKING, SO GAIT

5124
03:02:45,002 --> 03:02:47,738
ISSUES, MOTOR SPEECH PROBLEMS,

5125
03:02:47,738 --> 03:02:50,441
TREATED WITH BACLOFEN PUMP,

5126
03:02:50,441 --> 03:02:52,543
COULDN'T WRITE BECAUSE OF HER

5127
03:02:52,543 --> 03:03:03,220
FINGERS, AND SHE HAD -- NORMAL

5128
03:03:03,220 --> 03:03:03,821
INTELLIGENCE BUT COULDN'T DO THE

5129
03:03:03,821 --> 03:03:09,960
THINGS SHE WANTED TO DO.

5130
03:03:09,960 --> 03:03:12,596
>> WHAT'S YOUR FAVORITE
TAYLOR

5131
03:03:12,596 --> 03:03:14,765
SWIFT SONG?

5132
03:03:14,765 --> 03:03:21,472
>> Y, O, U, B, E, L, O, N,
G.

5133
03:03:21,472 --> 03:03:24,308
>> YOU BELONG TO ME?

5134
03:03:24,308 --> 03:03:27,044
IS THAT IT?

5135
03:03:27,044 --> 03:03:28,479
>> SING IT HERE WITH ME.

5136
03:03:28,479 --> 03:03:29,646
>> SO SHE CAN ANSWER, BUT
SHE

5137
03:03:29,646 --> 03:03:32,583
CAN'T SPEAK.

5138
03:03:32,583 --> 03:03:34,351
I DON'T KNOW WHO THIS TAYLOR

5139
03:03:34,351 --> 03:03:35,886
SWIFT PERSON IS.

5140
03:03:35,886 --> 03:03:41,458
BUT APPARENTLY SHE LIKES HER.

5141
03:03:41,458 --> 03:03:42,426
WELL, SHE GOT DEEP BRAIN

5142
03:03:42,426 --> 03:03:44,194
STIMULATION, AND NOW SHE'S

5143
03:03:44,194 --> 03:03:50,434
WALKING.

5144
03:03:50,434 --> 03:03:51,535
I GUESS WHEN YOU SEE SOMEONE

5145
03:03:51,535 --> 03:03:54,805
WHO'S AFFECTED THAT MUCH, THEN

5146
03:03:54,805 --> 03:03:56,440
EVEN INCREASES IN ACTIVITIES OF

5147
03:03:56,440 --> 03:03:59,510
DAILY LIVING TO THIS EXTENT HAVE

5148
03:03:59,510 --> 03:04:00,944
AN ENORMOUS EFFECT ON THE

5149
03:04:00,944 --> 03:04:03,847
PATIENT'S QUALITY OF LIFE, AND

5150
03:04:03,847 --> 03:04:07,251
ALSO ON THE FAMILY'S QUALITY OF

5151
03:04:07,251 --> 03:04:07,684
LIFE.

5152
03:04:07,684 --> 03:04:09,219
REALLY POINTING OUT HOW

5153
03:04:09,219 --> 03:04:10,187
IMPORTANT DATA SHARING IS.

5154
03:04:10,187 --> 03:04:11,822
BUT NOT JUST DATA SHARING.

5155
03:04:11,822 --> 03:04:15,692
STORYTELLING.

5156
03:04:15,692 --> 03:04:16,326
COMMUNICATION.

5157
03:04:16,326 --> 03:04:23,767
THE WORK THAT JUSTIN DOES.

5158
03:04:23,767 --> 03:04:27,070
SO SHE CAN DO STEPS, ET CETERA.

5159
03:04:27,070 --> 03:04:28,605
AND THEN JUST A FEW DAYS AGO, I

5160
03:04:28,605 --> 03:04:31,008
THINK IT WAS MONDAY OR SO, WE

5161
03:04:31,008 --> 03:04:33,744
GET AN EMAIL FROM THE DAD.

5162
03:04:33,744 --> 03:04:35,145
AND I'M GOING TO LET YOU READ

5163
03:04:35,145 --> 03:04:38,649
THIS.

5164
03:04:38,649 --> 03:04:49,159
AND HERE'S THE VIDEO HE SENT.

5165
03:04:57,901 --> 03:05:00,771
OKAY, ENOUGH SAID.

5166
03:05:00,771 --> 03:05:02,172
WE ALSO DO TRAINING.

5167
03:05:02,172 --> 03:05:03,707
SO THE THING THAT I'M REALLY

5168
03:05:03,707 --> 03:05:06,109
HAPPY ABOUT IS ON THURSDAY

5169
03:05:06,109 --> 03:05:07,444
MORNINGS, ALMOST ALWAYS, MAYBE

5170
03:05:07,444 --> 03:05:09,279
ABOUT 80% OF THE TIME, ABOUT

5171
03:05:09,279 --> 03:05:12,349
9:00, WE HAVE ROUNDS, AND THE

5172
03:05:12,349 --> 03:05:13,517
ROUNDS ARE IN THE AUDITORIUM

5173
03:05:13,517 --> 03:05:13,951
NOW.

5174
03:05:13,951 --> 03:05:17,087
THE CLINICAL CENTER IS GIVING US

5175
03:05:17,087 --> 03:05:18,589
MASUR AUDITORIUM, JIM, BY THE

5176
03:05:18,589 --> 03:05:19,790
WAY TO DO OUR ROUNDS AND THERE

5177
03:05:19,790 --> 03:05:22,326
ARE ABOUT 60, 70 YOUNG PEOPLE.

5178
03:05:22,326 --> 03:05:26,330
THESE ARE POSTBAC LARGELY,

5179
03:05:26,330 --> 03:05:27,631
ALMOST ALL OF THEM ARE, SO

5180
03:05:27,631 --> 03:05:29,233
THEY'VE DONE COLLEGE AND ARE

5181
03:05:29,233 --> 03:05:30,000
SPENDING ONE YEAR OR TWO YEARS

5182
03:05:30,000 --> 03:05:31,401
HERE AND MOST OF THEM WANT TO

5183
03:05:31,401 --> 03:05:32,069
BECOME PHYSICIANS.

5184
03:05:32,069 --> 03:05:33,570
I INTERVIEW A PATIENT IN THE UDP

5185
03:05:33,570 --> 03:05:34,471
OR SOMEONE ELSE I KNOW IN THE

5186
03:05:34,471 --> 03:05:36,006
COMMUNITY OR SO, AND INTERVIEW

5187
03:05:36,006 --> 03:05:36,974
THE PATIENT AND THEN WE TALK

5188
03:05:36,974 --> 03:05:41,511
ABOUT THE DISEASE, ET CETERA.

5189
03:05:41,511 --> 03:05:43,080
AND IT'S REALLY INSPIRING.

5190
03:05:43,080 --> 03:05:43,814
ANYWAY.

5191
03:05:43,814 --> 03:05:45,115
IT'S ALSO TRUE THAT OUR YOUNG

5192
03:05:45,115 --> 03:05:50,921
PEOPLE HAVE BEEN AUTHORS,

5193
03:05:50,921 --> 03:05:51,922
UNDIAGNOSED DISEASE PROGRAM

5194
03:05:51,922 --> 03:05:53,690
ARTICLES, WE HAVE A

5195
03:05:53,690 --> 03:05:54,691
BIOINFORMATICS JOURNAL CLUB,

5196
03:05:54,691 --> 03:05:55,926
GENOME SCHOOL, IN OTHER WORDS WE

5197
03:05:55,926 --> 03:05:56,760
DO A LOT OF TRAINING AND THAT

5198
03:05:56,760 --> 03:05:58,061
MAY BE ONE OF THE MORE

5199
03:05:58,061 --> 03:05:58,862
GRATIFYING THINGS THAT WE

5200
03:05:58,862 --> 03:06:01,398
ACCOMPLISH.

5201
03:06:01,398 --> 03:06:02,699
WE'VE BEEN VERY PRODUCTIVE IN

5202
03:06:02,699 --> 03:06:06,703
THE YEAR 2018, BEFORE COVID, WE

5203
03:06:06,703 --> 03:06:09,907
HAD ALREADY ENGAGED 100

5204
03:06:09,907 --> 03:06:10,974
PHYSICIANS IN THE INTRAMURAL

5205
03:06:10,974 --> 03:06:13,277
PROGRAM FROM 12 INSTITUTES.

5206
03:06:13,277 --> 03:06:15,145
572 OF OUR PATIENTS AT THAT TIME

5207
03:06:15,145 --> 03:06:18,015
HAD BEEN ENROLLED IN OTHER

5208
03:06:18,015 --> 03:06:19,950
PROTOCOLS, ALL THOSE DIFFERENT

5209
03:06:19,950 --> 03:06:20,484
PROTOCOLS.

5210
03:06:20,484 --> 03:06:23,787
WE REFERRED 159 TO OTHER

5211
03:06:23,787 --> 03:06:26,757
INTRAMURAL STUDIES, AND HAD

5212
03:06:26,757 --> 03:06:28,759
PUBLICATIONS THAT NUMBERED 37 IN

5213
03:06:28,759 --> 03:06:30,594
THAT YEAR, WHICH IF YOU PRORATE

5214
03:06:30,594 --> 03:06:32,362
TO THE AMOUNT OF SUPPORT THAT WE

5215
03:06:32,362 --> 03:06:36,600
HAD, BECAUSE WE HAD IN THE ORDER

5216
03:06:36,600 --> 03:06:38,502
OF $7 MILLION IN SUPPORT FOR OUR

5217
03:06:38,502 --> 03:06:43,407
PROGRAM A ANNUALLY AND THE

5218
03:06:43,407 --> 03:06:45,175
INTRAMURAL BUDGET IS 5 BILLION

5219
03:06:45,175 --> 03:06:46,476
SO THAT'S MAYBE 600 TIMES AS

5220
03:06:46,476 --> 03:06:47,778
MUCH.

5221
03:06:47,778 --> 03:06:50,480
600 TIMES 37 IS LIKE 25,000

5222
03:06:50,480 --> 03:06:50,814
ARTICLES.

5223
03:06:50,814 --> 03:06:52,716
THERE WERE NOT 25,000 ARTICLES

5224
03:06:52,716 --> 03:06:54,318
PUT OUT BY THE INTRAMURAL

5225
03:06:54,318 --> 03:06:59,089
PROGRAM IN AGA 2018.

5226
03:06:59,089 --> 03:07:00,590
ALSO 600 PATIENT DAYS PRORATES

5227
03:07:00,590 --> 03:07:01,591
TO ABOUT 350,000 PATIENT DAYS

5228
03:07:01,591 --> 03:07:04,161
AND USUALLY THERE'S WHAT, 90 OR

5229
03:07:04,161 --> 03:07:04,728
100,000, SOMETHING OF THAT

5230
03:07:04,728 --> 03:07:05,562
ORDER.

5231
03:07:05,562 --> 03:07:06,530
ANYWAY, SO WE'RE PRODUCTIVE.

5232
03:07:06,530 --> 03:07:09,032
AND WE HAD NON-UDP INVESTIGATORS

5233
03:07:09,032 --> 03:07:11,335
AS CO-AUTHORS OF MANY OF OUR

5234
03:07:11,335 --> 03:07:12,202
PAPERS.

5235
03:07:12,202 --> 03:07:15,605
BASICALLY WE CAN'T DO THE PROPER

5236
03:07:15,605 --> 03:07:16,940
RESEARCH ON ALL THE CASES THAT

5237
03:07:16,940 --> 03:07:18,041
WE HAVE.

5238
03:07:18,041 --> 03:07:19,209
WE'RE SORT OF ANXIOUS TO GIVE

5239
03:07:19,209 --> 03:07:19,876
THEM AWAY.

5240
03:07:19,876 --> 03:07:21,745
AND WE PROVIDED ALL SORTS OF

5241
03:07:21,745 --> 03:07:23,280
DATABASE SEARCHES FOR

5242
03:07:23,280 --> 03:07:24,114
COLLABORATORS WHO MIGHT WANT TO

5243
03:07:24,114 --> 03:07:25,716
FIND A VARIANT IN A GENE THAT

5244
03:07:25,716 --> 03:07:28,652
THEY'RE STUDYING.

5245
03:07:28,652 --> 03:07:30,721
THIS PROGRAM HAS EXPANDED IN

5246
03:07:30,721 --> 03:07:33,657
2013 TO A NETWORK OF 7 CLINICAL

5247
03:07:33,657 --> 03:07:35,359
SITES FUNDED BY THE COMMON FUND

5248
03:07:35,359 --> 03:07:38,295
WITH A COORDINATING CENTER,

5249
03:07:38,295 --> 03:07:42,666
SEQUENCING CORES, METABOLIC

5250
03:07:42,666 --> 03:07:43,867
CORE, MODEL ORGANISM SCREENING

5251
03:07:43,867 --> 03:07:44,935
CENTER, ET CETERA, AND A CON

5252
03:07:44,935 --> 03:07:46,837
SENT THAT ALLOWS THE MEMBERS OF

5253
03:07:46,837 --> 03:07:48,839
THIS CONSORTIUM TO SHARE

5254
03:07:48,839 --> 03:07:49,473
PERSONALLY IDENTIFIED

5255
03:07:49,473 --> 03:07:51,108
INFORMATION AND TO SHARE

5256
03:07:51,108 --> 03:07:51,875
DE-IDENTIFIED INFORMATION WITH

5257
03:07:51,875 --> 03:07:52,743
OTHER INVESTIGATORS AROUND THE

5258
03:07:52,743 --> 03:07:53,410
WORLD.

5259
03:07:53,410 --> 03:07:56,913
THIS EXPANDED TO 11 SITES IN

5260
03:07:56,913 --> 03:07:58,015
2018.

5261
03:07:58,015 --> 03:08:01,318
AND IN THE NINE YEARS THAT THIS

5262
03:08:01,318 --> 03:08:04,788
WAS EXTANT, THE UDN HAD ALMOST

5263
03:08:04,788 --> 03:08:06,690
7,000 APPLICATIONS AND IT

5264
03:08:06,690 --> 03:08:10,193
EVALUATED 2400 OR SO, MADE 745 5

5265
03:08:10,193 --> 03:08:11,695
DIAGNOSES.

5266
03:08:11,695 --> 03:08:13,930
ET CETERA.

5267
03:08:13,930 --> 03:08:16,967
AND RIGHT NOW, THE PROGRAM IS

5268
03:08:16,967 --> 03:08:20,904
SUPPORTED BY ABOUT $7.7 MILLION

5269
03:08:20,904 --> 03:08:22,539
THROUGH A SCHOOL TAX MECHANISM.

5270
03:08:22,539 --> 03:08:23,974
IT'S NOT THROUGH THE CLINICAL

5271
03:08:23,974 --> 03:08:25,409
CENTER'S SCHOOL TAX, BUT IT'S A

5272
03:08:25,409 --> 03:08:28,045
SEPARATE TAX THAT THE INSTITUTE

5273
03:08:28,045 --> 03:08:29,846
DIRECTORS AGREED TO SUPPORT.

5274
03:08:29,846 --> 03:08:31,648
WE REMAIN A LARGE PART OF THE

5275
03:08:31,648 --> 03:08:32,783
UDN.

5276
03:08:32,783 --> 03:08:34,084
THE NATIONAL NETWORK HAS A

5277
03:08:34,084 --> 03:08:35,585
CLINICAL PROTOCOL THAT I'M THE

5278
03:08:35,585 --> 03:08:37,354
PRINCIPAL INVESTIGATOR OF, SO WE

5279
03:08:37,354 --> 03:08:39,523
USE THAT AND WE ARE MEMBERS OF

5280
03:08:39,523 --> 03:08:41,191
THE STEERING COMMITTEE, THE

5281
03:08:41,191 --> 03:08:42,759
EXECUTIVE COMMITTEE AND A BUNCH

5282
03:08:42,759 --> 03:08:45,662
OF OTHER COMMITTEES.

5283
03:08:45,662 --> 03:08:48,498
ALSO IN 2014, WE ESTABLISHED THE

5284
03:08:48,498 --> 03:08:50,834
UNDIAGNOSED DISEASES NETWORK

5285
03:08:50,834 --> 03:08:52,702
INTERNATIONAL ALONG WITH THE

5286
03:08:52,702 --> 03:08:55,338
WILHELM FOUNDATION, WHICH WAS

5287
03:08:55,338 --> 03:09:01,178
FOUNDED BY A WOMAN NAMED HILENE

5288
03:09:01,178 --> 03:09:02,612
CEDAROFF WHO HAD THREE CHILDREN

5289
03:09:02,612 --> 03:09:04,514
WHO DIED OF AN UNDIAGNOSED

5290
03:09:04,514 --> 03:09:04,748
DISEASE.

5291
03:09:04,748 --> 03:09:06,850
TOGETHER WE'VE CREATED THE UDNI

5292
03:09:06,850 --> 03:09:08,385
WITH 12 INTERNATIONAL MEETINGS

5293
03:09:08,385 --> 03:09:10,387
AND POLICIES, ET CETERA, AND THE

5294
03:09:10,387 --> 03:09:12,022
PEOPLE WHO COME TO THESE

5295
03:09:12,022 --> 03:09:13,190
MEETINGS WHICH GENERALLY THERE

5296
03:09:13,190 --> 03:09:16,159
ARE ABOUT MAYBE 80 PEOPLE FROM

5297
03:09:16,159 --> 03:09:19,129
AROUND THE WORLD AND THEN MAYBE

5298
03:09:19,129 --> 03:09:20,664
ANOTHER 100, 150 LOCALLY, PEOPLE

5299
03:09:20,664 --> 03:09:22,099
WHO COME TO THESE MEETINGS PAY

5300
03:09:22,099 --> 03:09:23,433
THEIR OWN WAY.

5301
03:09:23,433 --> 03:09:24,668
BASICALLY WE'RE A MOM AND POP

5302
03:09:24,668 --> 03:09:25,102
SHOP.

5303
03:09:25,102 --> 03:09:26,036
WE HAVE NO MONEY.

5304
03:09:26,036 --> 03:09:27,370
BUT PEOPLE WANT TO COME BECAUSE

5305
03:09:27,370 --> 03:09:30,207
THEY WANT TO SHARE, AND THEY

5306
03:09:30,207 --> 03:09:31,441
LOVE THE IDEA OF MAKING

5307
03:09:31,441 --> 03:09:33,944
DIAGNOSES.

5308
03:09:33,944 --> 03:09:35,612
AND WE ALSO HAVE A LOW AND

5309
03:09:35,612 --> 03:09:38,348
MIDDLE INCOME COUNTRIES WORKING

5310
03:09:38,348 --> 03:09:41,384
GROUP WITH MEMBERS ALL OVER THE

5311
03:09:41,384 --> 03:09:42,919
WORLD AND A CHAMPIONS PROGRAM TO

5312
03:09:42,919 --> 03:09:45,122
ESTABLISH UNDIAGNOSED DISEASE

5313
03:09:45,122 --> 03:09:46,656
PROGRAMS IN COUNTRIES THAT HAVE

5314
03:09:46,656 --> 03:09:49,860
LOW AND MIDDLE INCOME.

5315
03:09:49,860 --> 03:09:51,928
WE STARTED OFF WITH THE

5316
03:09:51,928 --> 03:09:59,503
DEMOCRATIC R LIN  LIB OF CONGO,

5317
03:09:59,503 --> 03:10:01,037
GHANA, MALI, PAKISTAN AND INDIA.

5318
03:10:01,037 --> 03:10:02,372
AND THE IDEA IS TO WORK

5319
03:10:02,372 --> 03:10:03,206
TOGETHER, TO COLLABORATE ON

5320
03:10:03,206 --> 03:10:05,041
CASES AND ESTABLISHING CLINICS

5321
03:10:05,041 --> 03:10:06,877
IN THOSE COUNTRIES THROUGH

5322
03:10:06,877 --> 03:10:08,411
PHILANTHROPY AND SHARING OF

5323
03:10:08,411 --> 03:10:10,380
EXPERTISE AND INFORMATION.

5324
03:10:10,380 --> 03:10:13,884
THIS IS SOME OF THE KIDS THAT

5325
03:10:13,884 --> 03:10:16,086
ARE BEING USED ESSENTIALLY TO

5326
03:10:16,086 --> 03:10:17,721
PROMOTE THE CHAMPIONS INITIATIVE

5327
03:10:17,721 --> 03:10:21,124
THROUGH THE WILHELM FOUNDATION.

5328
03:10:21,124 --> 03:10:28,498
AND NOW THERE ARE ALL OF THESE

5329
03:10:28,498 --> 03:10:29,533
UNDIAGNOSED DISEASES PROGRAMS

5330
03:10:29,533 --> 03:10:30,433
THROUGHOUT THE WORLD.

5331
03:10:30,433 --> 03:10:32,035
THIS DOESN'T WORK PERFECTLY.

5332
03:10:32,035 --> 03:10:32,969
AND THEN THOSE IN THE COUNTRY

5333
03:10:32,969 --> 03:10:36,339
AND THEY ALL STARTED HERE IN THE

5334
03:10:36,339 --> 03:10:38,875
INTERNAL PROGRAM AT THE NIH.

5335
03:10:38,875 --> 03:10:40,143
INTRAMURAL PROGRAM AT THE NIH.

5336
03:10:40,143 --> 03:10:41,311
PEOPLE CAN WORK WITH US BY

5337
03:10:41,311 --> 03:10:42,212
REFERRING PATIENTS IF THEY WANT

5338
03:10:42,212 --> 03:10:44,047
OR IF THEY HAVE A FAVORITE GENE,

5339
03:10:44,047 --> 03:10:45,882
WE CAN SEARCH FOR THAT GENE AND

5340
03:10:45,882 --> 03:10:47,117
SAY YEAH, WE'VE GOT A PATIENT,

5341
03:10:47,117 --> 03:10:48,185
THIS IS THE PHENOTYPE, ET

5342
03:10:48,185 --> 03:10:48,952
CETERA.

5343
03:10:48,952 --> 03:10:51,955
COLLABORATE ON RESEARCH AND I

5344
03:10:51,955 --> 03:10:54,057
PROVIDED MY PROTOCOL CONSENT AND

5345
03:10:54,057 --> 03:10:55,258
MANUAL OF OPERATIONS TO MANY

5346
03:10:55,258 --> 03:10:56,726
PEOPLE AROUND THE WORLD.

5347
03:10:56,726 --> 03:10:59,963
THIS IS NOT A PROGRAM THAT I

5348
03:10:59,963 --> 03:11:01,164
BELIEVE COULD BE DONE ANYWHERE

5349
03:11:01,164 --> 03:11:02,832
ELSE IN THE WORLD EXCEPT AT THE

5350
03:11:02,832 --> 03:11:06,236
NIH CLINICAL CENTER.

5351
03:11:06,236 --> 03:11:09,406
IN ADDITION TO BEING ABLE TO

5352
03:11:09,406 --> 03:11:10,941
PROVIDE THE INFRASTRUCTURE FOR

5353
03:11:10,941 --> 03:11:12,342
PATIENTS AND INVESTIGATORS, WE

5354
03:11:12,342 --> 03:11:16,346
ALSO HAVE HERE THE EXPERTISE OF

5355
03:11:16,346 --> 03:11:17,214
CONSULTANTS AND SPECIALISTS

5356
03:11:17,214 --> 03:11:18,415
ESPECIALLY IN RARE DISEASES

5357
03:11:18,415 --> 03:11:19,349
THAT'S UNPARALLELED IN THE

5358
03:11:19,349 --> 03:11:19,883
WORLD.

5359
03:11:19,883 --> 03:11:21,551
IN ADDITION, THE CLINICAL CENTER

5360
03:11:21,551 --> 03:11:24,321
GAVE US OFFERS AND CONFERENCE

5361
03:11:24,321 --> 03:11:26,256
ROOM SPACE, COMMUNICATIONS

5362
03:11:26,256 --> 03:11:27,357
ASSISTANCE AND INCREDIBLE

5363
03:11:27,357 --> 03:11:28,225
PATIENT CARE.

5364
03:11:28,225 --> 03:11:33,330
SO I'D SAY THAT FOR ALL OF THE

5365
03:11:33,330 --> 03:11:35,031
INDIVIDUALS WHO DON'T HAVE A

5366
03:11:35,031 --> 03:11:35,966
DIAGNOSIS, MOST OF OUR PATIENTS

5367
03:11:35,966 --> 03:11:39,202
COME FROM MAJOR MEDICAL CENTERS,

5368
03:11:39,202 --> 03:11:41,304
HAVING BEEN WORKED UP

5369
03:11:41,304 --> 03:11:41,938
EXTENSIVELY ALREADY.

5370
03:11:41,938 --> 03:11:44,474
FOR ALL THOSE WHO DON'T HAVE A

5371
03:11:44,474 --> 03:11:46,509
DIAGNOSIS, MEANING THAT THEY

5372
03:11:46,509 --> 03:11:49,079
DON'T HAVE A TREATMENT AND THEY

5373
03:11:49,079 --> 03:11:50,513
DON'T HAVE A PROGNOSIS, THEY

5374
03:11:50,513 --> 03:11:52,282
DON'T HAVE AN EXPLANATION FOR

5375
03:11:52,282 --> 03:11:55,151
THEIR FAMILIES, AND ESPECIALLY

5376
03:11:55,151 --> 03:11:56,353
THEY DON'T HAVE A COMMUNITY,

5377
03:11:56,353 --> 03:11:59,856
IT'S OUR JOB TO LEND A HAND AND

5378
03:11:59,856 --> 03:12:01,091
THE CLINICAL CENTER HELPS US DO

5379
03:12:01,091 --> 03:12:01,291
THAT.

5380
03:12:01,291 --> 03:12:07,764
THANK YOU.

5381
03:12:07,764 --> 03:12:11,034
>> THANK YOU, BILL.

5382
03:12:11,034 --> 03:12:13,703
QUESTIONS FOR DR. GAHL?

5383
03:12:13,703 --> 03:12:15,939
>> VERY IMPRESSIVE
PRESENTATION.

5384
03:12:15,939 --> 03:12:18,475
AND CLEARLY AT THE VERY FRONTIER

5385
03:12:18,475 --> 03:12:20,677
OF MEDICINE, SO KUDOS TO YOU AND

5386
03:12:20,677 --> 03:12:22,879
YOUR TEAM.

5387
03:12:22,879 --> 03:12:24,614
QUESTION I HAD, IT'S VERY

5388
03:12:24,614 --> 03:12:26,950
INTERESTING BOOK ENDS OF THE

5389
03:12:26,950 --> 03:12:29,319
CONVERSATIONS TODAY.

5390
03:12:29,319 --> 03:12:30,387
DR. SCHOR, YOU GAVE A VERY

5391
03:12:30,387 --> 03:12:31,755
INTERESTING FRAMEWORK I HAD NOT

5392
03:12:31,755 --> 03:12:33,189
THOUGHT OF BEFORE WHICH IS WE

5393
03:12:33,189 --> 03:12:35,058
LOOK AT -- TYPICALLY WE LOOK AT

5394
03:12:35,058 --> 03:12:36,793
UNUSUAL PHENOTYPES AND YOU LOOK

5395
03:12:36,793 --> 03:12:41,298
FOR THE GE GENOTYPE, AND THIS IN

5396
03:12:41,298 --> 03:12:42,632
EXAMPLE OF A PROGRAM LIKE THAT.

5397
03:12:42,632 --> 03:12:44,100
I'M WONDERING IF THERE'S A

5398
03:12:44,100 --> 03:12:45,702
PARALLEL, GOING BACK TO

5399
03:12:45,702 --> 03:12:47,771
DR. GINSBURG AS PRESENTATION

5400
03:12:47,771 --> 03:12:51,508
ABOUT THESE UNUSUAL GENOTYPES

5401
03:12:51,508 --> 03:12:54,911
LEADING TO UNDIAGNOSED

5402
03:12:54,911 --> 03:12:56,446
PHENOTYPES, AND I WAS WONDERING

5403
03:12:56,446 --> 03:12:58,181
HOW THOSE TWO BOOK ENDS LINK

5404
03:12:58,181 --> 03:12:58,448
TOGETHER.

5405
03:12:58,448 --> 03:13:00,250
>> THEY'RE DIFFERENT,
COMPLETELY

5406
03:13:00,250 --> 03:13:01,051
DIFFERENT APPROACHES.

5407
03:13:01,051 --> 03:13:04,187
I DO THINK THAT THERE CAN BE

5408
03:13:04,187 --> 03:13:08,858
SOME INSIGHTS THAT THE VARIANT

5409
03:13:08,858 --> 03:13:13,330
FIRST OR GENE FIRST APPROACH

5410
03:13:13,330 --> 03:13:15,031
OFFERS.

5411
03:13:15,031 --> 03:13:17,067
BECAUSE THIS COULD BE A

5412
03:13:17,067 --> 03:13:18,968
DEMONSTRATION OF A NEW DISEASE

5413
03:13:18,968 --> 03:13:21,137
THAT COULD SUBSEQUENTLY BE

5414
03:13:21,137 --> 03:13:22,906
PHENOTYPE HERE AT THE CLINICAL

5415
03:13:22,906 --> 03:13:24,741
CENTER, I'M SURE THAT WAS

5416
03:13:24,741 --> 03:13:26,476
PRESENTED.

5417
03:13:26,476 --> 03:13:29,679
I THINK THESE ARE IN A WAY

5418
03:13:29,679 --> 03:13:30,447
PHILOSOPHICALLY DIFFERENT

5419
03:13:30,447 --> 03:13:30,980
APPROACHES.

5420
03:13:30,980 --> 03:13:32,916
SO I'M REALLY INTERESTED IN AN

5421
03:13:32,916 --> 03:13:36,720
APPROACH THAT WE TAKE BECAUSE I

5422
03:13:36,720 --> 03:13:38,555
SEE THE PATIENTS THAT ARE MORE

5423
03:13:38,555 --> 03:13:39,989
SEVERELY AFFECTED AND HOW

5424
03:13:39,989 --> 03:13:44,260
DEVASTATED THEIR LIVES ARE.

5425
03:13:44,260 --> 03:13:45,795
SO THAT'S ALWAYS GOING TO BE MY

5426
03:13:45,795 --> 03:13:46,062
APPROACH.

5427
03:13:46,062 --> 03:13:48,665
BUT I VALUE ESPECIALLY, LET'S

5428
03:13:48,665 --> 03:13:51,401
SAY PHILOSOPHICALLY AND

5429
03:13:51,401 --> 03:13:52,769
STRATEGICALLY, THE OTHER

5430
03:13:52,769 --> 03:13:56,039
APPROACH TO DETERMINE THE FULL

5431
03:13:56,039 --> 03:13:57,474
EXTENT OF PHENOTYPES THAT COULD

5432
03:13:57,474 --> 03:13:58,875
BE ASSOCIATED WITH GENETIC

5433
03:13:58,875 --> 03:14:04,514
VARIANTS.

5434
03:14:04,514 --> 03:14:05,815
>> STEPHANIE.

5435
03:14:05,815 --> 03:14:07,584
>> ACTUALLY I WAS GOING TO
SAY

5436
03:14:07,584 --> 03:14:10,086
ALMOST THE SAME THING THAT

5437
03:14:10,086 --> 03:14:10,887
DR. CHIN SAID.

5438
03:14:10,887 --> 03:14:12,856
BUT I WILL ASK OR MAKE ONE OTHER

5439
03:14:12,856 --> 03:14:13,690
COMMENT.

5440
03:14:13,690 --> 03:14:14,824
I THOUGHT IT WAS SO COMPELLING

5441
03:14:14,824 --> 03:14:16,326
WHEN YOU SAID WE NEED TO

5442
03:14:16,326 --> 03:14:18,461
REMEMBER TO TELL A STORY, WE

5443
03:14:18,461 --> 03:14:22,732
NEED TO COMMUNICATE, AND I WORRY

5444
03:14:22,732 --> 03:14:24,534
SOMETIMES THAT THE ENORMOUS

5445
03:14:24,534 --> 03:14:26,102
BENEFIT THAT ELECTRONIC MEDICAL

5446
03:14:26,102 --> 03:14:28,438
RECORDS HAVE BROUGHT TO OUR

5447
03:14:28,438 --> 03:14:30,473
PATIENTS AND TO OUR PROVIDES AND

5448
03:14:30,473 --> 03:14:32,041
TO OUR INVESTIGATORS AND

5449
03:14:32,041 --> 03:14:34,277
EDUCATORS, THEY ALSO IN SOME

5450
03:14:34,277 --> 03:14:37,914
WAYS OR AT LEAST AT SOME TIMES

5451
03:14:37,914 --> 03:14:38,715
ELIMINATE THAT OPPORTUNITY TO

5452
03:14:38,715 --> 03:14:41,751
TELL A STORY BECAUSE THEY'RE SO

5453
03:14:41,751 --> 03:14:43,620
PRESCRIPTIVE AT WHAT THEY

5454
03:14:43,620 --> 03:14:44,788
INCLUDE.

5455
03:14:44,788 --> 03:14:46,456
AND I JUST HOPE THAT YOUR GOOD

5456
03:14:46,456 --> 03:14:49,726
WORK ISN'T IN ANY WAY LIMITED BY

5457
03:14:49,726 --> 03:14:51,828
THE PRESCRIPTIVE NATURE OF OUR

5458
03:14:51,828 --> 03:14:53,897
ELECTRONIC HEALTH RECORDS.

5459
03:14:53,897 --> 03:14:54,531
SO THANK YOU.

5460
03:14:54,531 --> 03:14:55,899
>> THANK YOU FOR THAT
COMMENT.

5461
03:14:55,899 --> 03:14:59,636
I HAVE TO SAY, IN LOOKING OVER

5462
03:14:59,636 --> 03:15:01,037
THESE RECORDS AND I'VE LOOKED

5463
03:15:01,037 --> 03:15:02,138
OVER THOUSANDS OF THEM, THAT

5464
03:15:02,138 --> 03:15:04,307
IT'S A HUGE PAIN IN THE NECK TO

5465
03:15:04,307 --> 03:15:06,676
SEE COPY FORWARD.

5466
03:15:06,676 --> 03:15:08,077
SO WE GET RECORD THAT HAVE

5467
03:15:08,077 --> 03:15:09,612
THOUSANDS OF PAGES, LITERALLY

5468
03:15:09,612 --> 03:15:11,414
THOUSANDS OF PAGES, AND WE HAVE

5469
03:15:11,414 --> 03:15:13,349
TO LOOK THROUGH THE SAME DAMN

5470
03:15:13,349 --> 03:15:15,218
THING OVER AND OVER AGAIN.

5471
03:15:15,218 --> 03:15:16,619
IT DRIVES ME NUTS!

5472
03:15:16,619 --> 03:15:18,054
AND I'M SURE IT DRIVES YOU ALL

5473
03:15:18,054 --> 03:15:20,723
NUTS TOO.

5474
03:15:20,723 --> 03:15:22,258
SO WE'RE ALL TOGETHER ON THAT.

5475
03:15:22,258 --> 03:15:23,359
SO THAT'S A PROBLEM.

5476
03:15:23,359 --> 03:15:27,163
BUT YOUR OTHER POINT WAS TELLING

5477
03:15:27,163 --> 03:15:27,397
A STORY.

5478
03:15:27,397 --> 03:15:28,731
I CAN SAY THAT IN THE EARLY DAYS

5479
03:15:28,731 --> 03:15:30,934
OF THIS, THERE WAS A HUGE AMOUNT

5480
03:15:30,934 --> 03:15:32,135
OF PUBLICITY ABOUT THIS.

5481
03:15:32,135 --> 03:15:38,308
IT WAS ON 60 MINUTES, DISCOVERYY

5482
03:15:38,308 --> 03:15:41,578
CHANNEL, ALL THE NEWSPAPERS, ET

5483
03:15:41,578 --> 03:15:42,779
CETERA, AND THAT WAS

5484
03:15:42,779 --> 03:15:45,448
ESSENTIALLY, OUTSIDE OF THE FACT

5485
03:15:45,448 --> 03:15:50,587
THAT ELIAS SIRHUNI GAVE US A

5486
03:15:50,587 --> 03:15:51,955
CERTAIN AMOUNT OF MONEY FROM

5487
03:15:51,955 --> 03:15:54,157
2010 TO 2012, BUT THE PUBLICITY

5488
03:15:54,157 --> 03:15:55,725
IS WHAT ALLOWED FOR THE

5489
03:15:55,725 --> 03:15:56,626
CONTINUATION OF THIS PROGRAM

5490
03:15:56,626 --> 03:16:00,663
AFTER ELIAS LEFT, AND THAT PUB

5491
03:16:00,663 --> 03:16:02,232
PUBLICITY, I ALWAYS SAY IT

5492
03:16:02,232 --> 03:16:03,099
SHAMED THE NIH INTO CONTINUING

5493
03:16:03,099 --> 03:16:03,633
THE PROGRAM.

5494
03:16:03,633 --> 03:16:05,001
AND I DON'T THINK THAT WE WOULD

5495
03:16:05,001 --> 03:16:06,769
HAVE A PROGRAM IF THERE WEREN'T

5496
03:16:06,769 --> 03:16:10,240
THAT PUBLICITY.

5497
03:16:10,240 --> 03:16:12,575
SO -- AND THE PUBLICITY WAS IN

5498
03:16:12,575 --> 03:16:13,076
TELLING STORIES.

5499
03:16:13,076 --> 03:16:14,410
IT WASN'T JUST LIKE AN

5500
03:16:14,410 --> 03:16:15,411
ADVERTISEMENT LIKE, YOU KNOW,

5501
03:16:15,411 --> 03:16:17,814
BUY THIS OR SOMETHING OF THAT

5502
03:16:17,814 --> 03:16:18,481
SORT.

5503
03:16:18,481 --> 03:16:19,782
IT WAS THE HEART-WRENCHING

5504
03:16:19,782 --> 03:16:20,917
STORIES OF PEOPLE WHO HAD

5505
03:16:20,917 --> 03:16:26,856
BENEFITED FROM HAVING DIAGNOSES.

5506
03:16:26,856 --> 03:16:27,957
>> THANK YOU.

5507
03:16:27,957 --> 03:16:28,224
>> SHERIN.

5508
03:16:28,224 --> 03:16:30,360
>> THANK YOU, NINA.

5509
03:16:30,360 --> 03:16:31,461
DR. GAHL, I AGREE WITH YOU, IT'S

5510
03:16:31,461 --> 03:16:32,862
A WONDERFUL PROGRAM.

5511
03:16:32,862 --> 03:16:35,431
AND IT DOES BRING CLOSURE EVEN

5512
03:16:35,431 --> 03:16:38,801
IF NOT TREATMENTS FOR MANY

5513
03:16:38,801 --> 03:16:39,369
FAMILIES.

5514
03:16:39,369 --> 03:16:42,105
MY QUESTION HAS TO DO WITH THE

5515
03:16:42,105 --> 03:16:46,376
FACT THAT NOW EXOME AND WGS HAS

5516
03:16:46,376 --> 03:16:47,810
BECOME SO WIDESPREAD THAT IT'S

5517
03:16:47,810 --> 03:16:52,849
BEING USED QUITE LIBERALLY,

5518
03:16:52,849 --> 03:16:54,517
CERTAINLY NEONATAL POPULATIONS

5519
03:16:54,517 --> 03:16:57,987
BUT BEYOND, TO MAKE DIAGNOSES OF

5520
03:16:57,987 --> 03:17:00,223
CONDITIONS THAT WE HAD NO IDEA

5521
03:17:00,223 --> 03:17:00,523
ABOUT.

5522
03:17:00,523 --> 03:17:02,058
IN OTHER WORDS, IT'S DIFFERENT

5523
03:17:02,058 --> 03:17:06,996
FROM A FAMILY GOING FROM

5524
03:17:06,996 --> 03:17:08,998
INSTITUTION TO INSTITUTION WITH

5525
03:17:08,998 --> 03:17:11,301
AN UNDIAGNOSED DISORDER BUT

5526
03:17:11,301 --> 03:17:12,769
RATHER BEING DONE PROSPECTIVELY.

5527
03:17:12,769 --> 03:17:14,137
SO MY QUESTION IS, THERE'S SO

5528
03:17:14,137 --> 03:17:16,239
MANY VARIANTS OF UNKNOWN

5529
03:17:16,239 --> 03:17:18,374
SIGNIFICANCE THAT SHOW UP, AND I

5530
03:17:18,374 --> 03:17:20,009
WONDERED IF YOU HAVE ANY

5531
03:17:20,009 --> 03:17:22,078
INSIGHTS BASED ON YOUR

5532
03:17:22,078 --> 03:17:24,781
EXPERIENCES BECAUSE WE CAN'T GO

5533
03:17:24,781 --> 03:17:27,450
AFTER EVERY VARIANT, ANY

5534
03:17:27,450 --> 03:17:28,318
INSIGHTS YOU COULD SHARE WITH

5535
03:17:28,318 --> 03:17:30,320
US?

5536
03:17:30,320 --> 03:17:31,521
>> THAT'S EXACTLY THE
PROBLEM

5537
03:17:31,521 --> 03:17:33,923
THAT WE FACE EVERY DAY WITH

5538
03:17:33,923 --> 03:17:34,123
THIS.

5539
03:17:34,123 --> 03:17:37,794
THAT IS TO SAY, WE'LL HAVE -- IF

5540
03:17:37,794 --> 03:17:40,396
WE'RE LUCKY, WE'LL LIMIT OUR

5541
03:17:40,396 --> 03:17:41,831
POTENTIAL DISEASE CAUSING

5542
03:17:41,831 --> 03:17:44,801
VARIANTS TO FIVE OR 10 OR SO.

5543
03:17:44,801 --> 03:17:47,537
AND WE DON'T REALLY HAVE THE

5544
03:17:47,537 --> 03:17:49,839
CAPACITY TO TEST THE FUNCTION OF

5545
03:17:49,839 --> 03:17:51,407
EACH OF THOSE VARIANTS IN A

5546
03:17:51,407 --> 03:17:51,841
MODEL SYSTEM.

5547
03:17:51,841 --> 03:17:53,710
SO WE HAVE TO BE VERY SELECTIVE,

5548
03:17:53,710 --> 03:17:56,613
AND IT'S VERY PAINFUL TO SELECT

5549
03:17:56,613 --> 03:17:59,849
AGAINST SOME OF THESE.

5550
03:17:59,849 --> 03:18:02,819
AND BY THE WAY, YOU'RE RIGHT TO

5551
03:18:02,819 --> 03:18:04,754
ABOUT THE PROLIFERATION OF EXOME

5552
03:18:04,754 --> 03:18:05,888
AND GENOME SEQUENCING.

5553
03:18:05,888 --> 03:18:07,690
NOW ALMOST ALL OF OUR PEDIATRIC

5554
03:18:07,690 --> 03:18:08,958
CASES HAVE ALREADY HAD AT LEAST

5555
03:18:08,958 --> 03:18:16,332
A SINGLE SINGLETON EXOME, OFTENA

5556
03:18:16,332 --> 03:18:18,334
FAMILY EXOME AND SOMETIMES

5557
03:18:18,334 --> 03:18:19,669
FAMILY GENOMES, THE ADULTS NOT

5558
03:18:19,669 --> 03:18:20,069
SO MUCH.

5559
03:18:20,069 --> 03:18:24,774
BUT WE HAVE TO, LET'S SAY, DO

5560
03:18:24,774 --> 03:18:25,341
BETTER.

5561
03:18:25,341 --> 03:18:27,110
SO WE USE ADVANCED GENETIC

5562
03:18:27,110 --> 03:18:27,810
TECHNIQUES.

5563
03:18:27,810 --> 03:18:29,112
FOR EXAMPLE, RNA SEQ, WHICH WILL

5564
03:18:29,112 --> 03:18:30,313
TELL YOU ABOUT THE EXPRESSION

5565
03:18:30,313 --> 03:18:32,649
AND WHETHER THERE ARE SPLICING

5566
03:18:32,649 --> 03:18:33,983
DEFECTS, USE THE LONG READ

5567
03:18:33,983 --> 03:18:35,084
SEQUENCING WHICH HELPS US TO

5568
03:18:35,084 --> 03:18:36,819
FIND SMALLER DELETIONS AND

5569
03:18:36,819 --> 03:18:37,920
THINGS OF THAT SORT.

5570
03:18:37,920 --> 03:18:39,722
AND NOW WE'RE GETTING INTO

5571
03:18:39,722 --> 03:18:42,992
EPIGENETICS AS WELL.

5572
03:18:42,992 --> 03:18:44,494
SO THOSE ARE THE ADVANCES WE

5573
03:18:44,494 --> 03:18:45,828
HAVE TO MAKE TO ADDRESS THE

5574
03:18:45,828 --> 03:18:47,597
ISSUES THAT YOU JUST BROUGHT UP.

5575
03:18:47,597 --> 03:18:49,365
AND ALSO COLLABORATION IS

5576
03:18:49,365 --> 03:18:49,932
INCREDIBLY IMPORTANT.

5577
03:18:49,932 --> 03:18:55,171
I THINK IF I HAD JUST A LITTLE

5578
03:18:55,171 --> 03:18:58,574
MORE, LET'S SAY, RESOURCES, I

5579
03:18:58,574 --> 03:18:59,942
WOULD PUT SOMEBODY ON DOING

5580
03:18:59,942 --> 03:19:01,411
NOTHING BUT TAKING OUR OLD CASES

5581
03:19:01,411 --> 03:19:02,545
AND LOOKING TO SEE WHO THE

5582
03:19:02,545 --> 03:19:04,781
EXPERT IS IN THE POTENTIAL

5583
03:19:04,781 --> 03:19:06,716
DISEASE CAUSING VARIANTS THAT WE

5584
03:19:06,716 --> 03:19:10,119
HAD AND CONTACTING THOSE

5585
03:19:10,119 --> 03:19:12,155
COLLABORATORS, POTENTIAL

5586
03:19:12,155 --> 03:19:13,089
COLLABORATORS, JUST DO THAT FOR

5587
03:19:13,089 --> 03:19:15,958
A LIVING.

5588
03:19:15,958 --> 03:19:18,995
>> THANK YOU.

5589
03:19:18,995 --> 03:19:20,229
>> ANTOINETTE.

5590
03:19:20,229 --> 03:19:22,098
>> HI.

5591
03:19:22,098 --> 03:19:29,138
>> HI, DR. GAHL.

5592
03:19:29,138 --> 03:19:33,576
WHAT IF A DOCTOR LIVES OFF SITE,

5593
03:19:33,576 --> 03:19:40,083
AT LIKE A REMOTE LOCATION, GAVE

5594
03:19:40,083 --> 03:19:43,486
BIRTH TO A CHILD WITH SOMETHING

5595
03:19:43,486 --> 03:19:45,655
VERY OFF WITH THEM, WOULD THEY

5596
03:19:45,655 --> 03:19:47,590
BE ABLE TO SEND THE BLOOD WORK

5597
03:19:47,590 --> 03:19:49,392
TO YOU OR YOU HAVE TO HAVE THEM

5598
03:19:49,392 --> 03:19:52,228
COME IN?

5599
03:19:52,228 --> 03:19:54,697
 AS A PATIENT TO BE

5600
03:19:54,697 --> 03:19:55,465
DIAGNOSED?

5601
03:19:55,465 --> 03:19:57,066
>> FIRST OF ALL THEY HAVE
TO

5602
03:19:57,066 --> 03:19:58,301
APPLY THROUGH THE REGISTRATION

5603
03:19:58,301 --> 03:20:00,470
FORM WHICH IS ONLINE, WHICH

5604
03:20:00,470 --> 03:20:03,039
LET'S SAY THEY CAN DO THAT.

5605
03:20:03,039 --> 03:20:05,441
SECONDLY, WE HAVE TO CONSENT

5606
03:20:05,441 --> 03:20:06,809
THEM.

5607
03:20:06,809 --> 03:20:09,045
AND WE CAN DO THAT BY PHONE, ET

5608
03:20:09,045 --> 03:20:10,513
CETERA, I MEAN, THEY WOULD HAVE

5609
03:20:10,513 --> 03:20:12,181
TO SIGN SOMETHING, BUT IT'S A

5610
03:20:12,181 --> 03:20:13,049
TECHNICALITY, THAT COULD BE

5611
03:20:13,049 --> 03:20:13,483
DONE.

5612
03:20:13,483 --> 03:20:15,651
AND THE ANSWER IS YES, WE DO

5613
03:20:15,651 --> 03:20:17,687
HAVE PATIENTS WHO CANNOT TRAVEL

5614
03:20:17,687 --> 03:20:20,523
BECAUSE THEY'RE SO -- THEY CAN'T

5615
03:20:20,523 --> 03:20:22,592
TRAVEL.

5616
03:20:22,592 --> 03:20:25,561
AND WE ACCEPT THEIR DNA.

5617
03:20:25,561 --> 03:20:26,829
SOMETIMES IT'S A LITTLE BIT OF A

5618
03:20:26,829 --> 03:20:27,697
TECHNICAL PROBLEM.

5619
03:20:27,697 --> 03:20:29,098
SO WE DON'T CHARGE FOR ANY OF

5620
03:20:29,098 --> 03:20:29,432
THAT.

5621
03:20:29,432 --> 03:20:31,667
BUT THE PEOPLE WHO DRAW THE

5622
03:20:31,667 --> 03:20:36,472
BLOOD CHARGE.

5623
03:20:36,472 --> 03:20:38,007
IT'S SORT OF A PAIN FOR US TO

5624
03:20:38,007 --> 03:20:39,342
CREATE A CONTRACT WITH EVERY

5625
03:20:39,342 --> 03:20:40,743
BLOOD DRAWING PLACE IN THE

5626
03:20:40,743 --> 03:20:41,544
COUNTRY.

5627
03:20:41,544 --> 03:20:42,545
BUT THAT'S JUST A TECHNICAL

5628
03:20:42,545 --> 03:20:42,979
PROBLEM.

5629
03:20:42,979 --> 03:20:44,413
THE ANSWER IS YES, WE CAN SEE

5630
03:20:44,413 --> 03:20:44,714
THEM.

5631
03:20:44,714 --> 03:20:48,684
WE CAN SEE THEIR BLOOD AND WORK

5632
03:20:48,684 --> 03:20:49,886
THEM UP FROM A DISTANCE.

5633
03:20:49,886 --> 03:20:50,720
HAPPY TO DO THAT.

5634
03:20:50,720 --> 03:20:56,225
>> THANKS.

5635
03:20:56,225 --> 03:20:58,194
>> WELL, I'VE BEEN WARNED
NOT TO

5636
03:20:58,194 --> 03:20:59,562
GO OVER, SO I THINK WE'RE RIGHT

5637
03:20:59,562 --> 03:21:00,229
ON TIME.

5638
03:21:00,229 --> 03:21:00,763
>> GREAT.

5639
03:21:00,763 --> 03:21:01,964
THANK YOU SO MUCH.

5640
03:21:01,964 --> 03:21:03,266
>> AGAIN, APPRECIATE THE

5641
03:21:03,266 --> 03:21:03,866
OPPORTUNITY TO SPEAK.

5642
03:21:03,866 --> 03:21:08,337
>> WE REALLY APPRECIATE
IT.

5643
03:21:08,337 --> 03:21:08,571
OKAY.

5644
03:21:08,571 --> 03:21:11,040
THANK YOU ALL FOR A WONDERFUL

5645
03:21:11,040 --> 03:21:12,809
MEETING, FOR SOME TRULY

5646
03:21:12,809 --> 03:21:17,246
EXCELLENT QUESTIONS THAT I THINK

5647
03:21:17,246 --> 03:21:18,481
GOT SOME OF OUR SPEAKERS

5648
03:21:18,481 --> 03:21:19,315
THINKING MORE ABOUT WHAT IT IS

5649
03:21:19,315 --> 03:21:21,851
THAT THEY WERE PRESENTING.

5650
03:21:21,851 --> 03:21:23,886
I DO WANT TO MAKE A COUPLE OF

5651
03:21:23,886 --> 03:21:25,621
ANNOUNCEMENTS BEFORE WE CLOSE.

5652
03:21:25,621 --> 03:21:29,826
OUR FINAL MEETING THIS YEAR WILL

5653
03:21:29,826 --> 03:21:34,130
BE FRIDAY, OCTOBER 18TH.

5654
03:21:34,130 --> 03:21:35,298
THE 2025 MEETING DATES ARE GOING

5655
03:21:35,298 --> 03:21:37,233
TO BE ANNOUNCED VERY SHORTLY,

5656
03:21:37,233 --> 03:21:41,604
AND YOU'LL GET NOTICE OF THAT.

5657
03:21:41,604 --> 03:21:44,974
AND I JUST -- ANY OF YOU WHO CAN

5658
03:21:44,974 --> 03:21:49,412
STAY AFTERWARDS, THE BOARD'S

5659
03:21:49,412 --> 03:21:49,979
COMMITTEE MANAGEMENT TEAM IS

5660
03:21:49,979 --> 03:21:53,015
GOING TO JOIN VIA ZOOM TO GIVE

5661
03:21:53,015 --> 03:21:56,085
UPDATES REGARDING MEMBERSHIP

5662
03:21:56,085 --> 03:21:58,621
REPORTING REQUIREMENTS, AND WILL

5663
03:21:58,621 --> 03:21:59,088
ANSWER ANY QUESTIONS.

5664
03:21:59,088 --> 03:22:01,290
SO THE COMMITTEE MANAGEMENT

5665
03:22:01,290 --> 03:22:06,762
PRESENTERS ARE MANDY STONEBERGER

5666
03:22:06,762 --> 03:22:09,165
AND AZEL WOODEN.

5667
03:22:09,165 --> 03:22:11,167
AND ARE THERE ANY FURTHER

5668
03:22:11,167 --> 03:22:12,268
QUESTION, THINGS WE SHOULD

5669
03:22:12,268 --> 03:22:15,671
DISCUSS?

5670
03:22:15,671 --> 03:22:16,672
OKAY, THEN I'M GOING TO TAKE MY

5671
03:22:16,672 --> 03:22:18,307
GAVEL AND ADJOURN THE MEETING.

5672
03:22:18,307 --> 03:22:28,307
THANK YOU ALL.