WELCOME TO NIDSC COUNCIL
IN PARTICULAR WORKING ON
LOOKING AT BEHAVIORAL SIGNALS TO
UNDERSTAND WHAT'S GOING ON IN
THE BRAIN, MENTAL HEALTH, AND
ALSO MORE RECENTLY WORKING WITH
THE NEUROSCIENTISTS TO EXPLAIN
HOW CHILDREN LEARN SPEECH.
>>THANK YOU DR. LISA.
>>I PEOPLE LISA GOFFMAN, AT
(INAUDIBLE) UNIVERSITY TEXAS
DALLAS, NATIONAL RESEARCH
HOSPITAL. I GET TO ANNOUNCE NEXT
COUNCIL THAT'S WHERE I WILL BE.
I STUDY LANGUAGE SPEECH MOTOR
INTERACTIONS WITH DEVELOPMENTAL
DISORDER AND SPEECH DISORDER AND
(INAUDIBLE) DEVELOPMENT.
>>DR. ANDY (INAUDIBLE).
>>I'M ANDY GROVES, I WORK IN
THE DEPARTMENT OF NEUROSCIENCE,
DEPARTMENT OF MOLECULAR AND
HUMAN GENETICS AT BAYLOR COLLEGE
OF MEDICINE HOUSTON. MY LAB
STUDIES DEVELOPMENT REGENERATION
AN EVOLUTION OF NCDC.
>>DR. (INAUDIBLE).
>>I AM PROFESSOR OF NEUROLOGY
AT JOHNS HOPKINS, I HAVE ALSO
BEEN SPEECH LANGUAGE PATHOLOGIST
AND I STUDY LANGUAGE RECOVERY
AND COGNITIVE RECOVERY AFTER THE
FIRST YEAR AFTER STROKE WITH
(INAUDIBLE) BEHAVIORAL ANALYSIS
>>THANK YOU. MS. BARBARA
KELLEY.
>>I'M BARBARA KELLEY, EXECUTIVE
DIRECTOR OF THE HEARING LOSS
ASSOCIATION AMERICA. LOCATED
HERE IN THE DC AREA. CONSUMER
FACING ORGANIZATION MADE UP OF
PEOPLE WITH HEARING LOSS AND
THOSE WHO TREAT THEM AND FAMILY
AND FRIENDS.
>>DR. ANIL.
>>(INAUDIBLE) DEPARTMENT OF
CHEMICAL ENGINEERING COLUMBIA
UNIVERSITY. I'M A EAR PHYSICIAN
AS WELL AS RESEARCH DESIGNING
TOOLS MICRONEEDLES FOR
(INAUDIBLE) HOPING TO OPEN UP
ERA OF PHYSICIAN MEDICINE
(INAUDIBLE).
>>I'M (INAUDIBLE) I AM SENIOR
COUNCIL AT FIDELITY NATIONAL
FINANCIAL. AND I ALSO
>>I'M DAN SANES, CENTER FOR
NEUROSCIENCE, MY RESEARCH
ADDRESSINGS HOW DEVELOPMENTAL
HEARING LOSS ATTACKS THE CENTRAL
NERVOUS SYSTEM ESPECIALLY
AUDITORY CORTEX, AND HOW THOSE
CHANGES AFFECT ABILITY OF
ANIMALS TO PROCESS
>>DR. BEN STROWBRIDGE.
>>I'M BEN STROWBRIDGE
NEUROSCIENCES DEPARTMENT CASE
WESTERN SCHOOL OF MEDICINE
CLEVELAND. MY GROUP STUDIES
(INAUDIBLE) ORGANIZATION OF LO
DA CIRCUITS AND DIFFERENT BRAIN
AREAS INCLUDING THE OLFACTORY
BULB.
>>THANKS. DR. (INAUDIBLE).
>>GOOD MORNING, I'M A PROFESSOR
AT THE UNIVERSITY OF CALIFORNIA
SAN FRANCISCO IN SCHOOL OF
NURSINURSING. MY AREA OF O RESEH
FOCUSES ON THE EXPERIENCE OF
HEARING LOSS IN OLDER ADULTS.
ESPECIALLY IN THE CONTEXT OF THE
DYAD, I'M ESPECIALLY INTERESTED
IN ISSUES SURROUNDING THE IMPACT
OF HEARING LOSS ON HEALTHCARE
COMMUNICATION AND TRYING TO HELP
PARTITIONERS -- PRACTITIONERS
UNDERSTAND HEARING LOSS AND PAY
ATTENTION TO IT BECAUSE IT IS
NOT SCREENED VERY WELL IN
PRIMARY CARE OTHER SETTINGS SO
IT IS NOT TREATED OR DEALT WITH.
THANK YOU.
>>THANK YOU. NOW WE HAVE THREE
NEW COUNCIL MEMBERS WHO WILL BE
INTRODUCING THE FIRST IS
CATHERINE BOATMAN. MS. BOTEN
(PHONETIC) IS ADVOCATE EDUCATOR
FOR THE DEAF AND HARD OF
HEARING.
PRESIDENT OF NEW YORK CITY
CHAPTER OF HEARING LOSS
ASSOCIATION OF AMERICA. SHE IS A
FORMER EDITOR NEW YORK TIMES
WITH A SPECIALTY IN SCIENCE AND
HEALTH AND HAS WRITTEN THROUGH
NUMEROUS PUBLICATION INCLUDING
THE NEW YORKER AND THE NEW YORK
TIMES MAGAZINE. SHE IS AUTHOR OF
SHOUTING MODE HEALTH WHY I AND
50 MILLION OTHER AMERICANS CAN'T
HEAR YOU. THIS IS ABOUT HER
EXPERIENCE AND THE IMPACT OF
LOSING HER HEARING IN MID LIFE.
WOULD YOU LIKE TO SAY HELLO?
>>SORRY, EVERYBODY THAT WAS A
VERY NICE DESCRIPTION, I DON'T
HAVE ANYTHING TO ADD EXCEPT THAT
I HAVE PROGRESSIVE BILATERAL
HEARING LOSS AND I HAVE A
COCHLEAR IMPLANT AND HEARING AID
AND I GREATLY BENEFIT FROM THEM,
FROM CAPTIONS AND FROM ASSISTED
LISTENING SYSTEMS. I'M
DELIGHTED TO BE ON THIS ADVISORY
BOARD. THANK YOU.
>>THANKS. WE ARE HAPPY TO HAVE
YOU. DR. DAN MURFIELD IS
PROFESSOR IN THE DEPARTMENT OF
BIOLOGY HEAD AND NECK SURGERY AT
THE OHIO STATE UNIVERSITY. HE
RECEIVED A Ph.D. IN BIOMEDICAL
ENGINEERING AND HIS RESEARCH
FOCUSES ON VESTIBULAR SYSTEM.
SPECIFICALLY HE BRINGS
BIOMEDICAL ENGINEERING
BACKGROUND TO STUDY WAYS TO
IMPROVE DIAGNOSTIC PROCEDURES
FOR PATIENTS SUFFERING FROM
VESTIBULAR SYMPTOMS. HE IS ALSO
INTERESTED IN VESTIBULAR TESTING
AND IMPLANT DEVELOPMENT, ON
BALANCE AND VESTIBULAR
PERCEPTIPERCEPTION. HE'S HAD NUS
GRANTS FROM NIH AND FUNDING FROM
OTHER ORGANIZATIONS. DR.
MURFIELD, WOULD YOU LIKE TO SAY
HELLO?
>>YOU DID SUCH A GREAT JOB OF
INTRODUCING ME BETTER THAN I CAN
DO FOR MYSELF. THANK YOU. THE
ONLY THING I WILL ADD IS THESE
DAYS THE SOME OF MY INTERESTS
EXPANDED TO INCLUDE THE
INFLUENCES OF VESTIBULAR
FUNCTION ON BALANCE AND IT IN
TURN HOW IT IMPACTS FALLS
ESPECIALLY AS AT LEAST SOME OF
US GROW A LITTLE BIT OLDER EACH
YEAR. THANK YOU. DR. SUSAN
THIBEAULT IS PROFESSOR DIVISION
OF BIOLOGY HEAD AND NECK
SURGERY, MADISON, THE ENDOWED
CHAIR IN HOE VICE CHAIR RESEARCH
DEPARTMENT OF SURGERY. THE
UNIVERSITY OF WISCONSIN HEALTH
MEDICAL DIRECTOR OF SPEECH AND
HEARING SERVICES. SHE HAS A
Ph.D. IN COMMUNICATIONS
DISORDERS AND HER RESEARCH IS
FOCUSED ON VOCAL CORD MUCOSA
BIOLOGY ENCOMPASSING
REGENERATIVE MEDICINE IMMUNOLOGY
AND DEVELOPMENT. SHE IS ALSO
PRINCIPLE INVESTIGATOR FOR THE
UNIVERSITY OF WISCONSIN MADISON
VOICE AND (INAUDIBLE) OUTCOMES
DATABASE WITH HEALTH RELATED
DATA INCLUDING LONG TERM DATA
FROM MORE THAN 5,000 PATIENTS
SEEN AT THE UNIVERSITY OF
WISCONSIN MADISON. DR.
THIBEAULT.
>>THAT WAS VERY NICE. THRILLED
TO BE HERE AND LOOKING FORWARD
TO THE NEXT THREE YEARS, THANK
YOU.
>>THANK YOU. WE HAVE THREE
EX-OFFICIO MEMBERS, THE FIRST IS
DR. JUDY SCHAFER WHO IS HERE FOR
DR. BECK FOR THE DEPARTMENT OF
VETERAN AFFAIRS.
>>I'M JUDY SCHAFER. I'M
AUDIOLOGIST AND REHABILITATION
PLANNING SPECIALIST FOR THE
VETERANS HEALTH ADMINISTRATION.
HEARING CONSERVATION AREAS.
DISABILITY COMPENSATION,
AUDITORY MILITARY INJURIES AND
TOXIC EXPOSURES AS WELL AS
SENSORY HEALTH AND DUAL SENSORY
IMPAIRMENT.
>>THANK YOU, DR. SCHAFER.
ONLINE WE HAVE DR. JEREMY NELSON
FROM THE DEPARTMENT OF DEFENSE.
DR. NELSON WOULD YOU LIKE TO SAY
HELLO?
>>GOOD AFTERNOON, JEREMY
NELSON, NEUROSCIENTIST BY
TRAINING. I OVERSEE THE DOD
JOINT INVESTMENTS AND HEARING
VISION PAIN AND BALANCE. THANKS
>>THANK YOU. MS. CHRISTY
(INAUDIBLE) FROM NIOCH IS HERE.
>>I'M FROM (INAUDIBLE)
AUDIOLOGIST, I PRIMARILY WORK ON
METHODS OF PREVENTING HEARING
LOSS IN WORKERS EXPOSED TO
(INAUDIBLE) AND OTHER TOXINS AND
DO WORK COLLABORATING WITH NI
NIDCC (INAUDIBLE).
>>WE HAVE FLOWER AD HOC MEMBERS
WHOP I WILL INTRODUCE IN TURN,
THE FIRST IS DR. JAY GODFRY.
PROFESSOR VICE CHAIR OF RESEARCH
IN THE DEPARTMENT OF NEUROLOGY
AND DEPARTMENT OF PSYCHOLOGY AT
THE UNIVERSITY OF PENNSYLVANIA.
HE OBTAINED M.D. DEGREE IN
MEDICINE AND Ph.D. IN
PHYSIOLOGY AND NEUROSCIENCE FROM
NEW YORK UNIVERSITY. HIS
RESEARCH FOCUSES ON
UNDERSTANDING HOW THE HUMAN
BRAIN TRANSFORMS OLFACTORY INPUT
INTO PERCEPTUAL REPRESENTATION.
AND HOW LEARNING MEMORY AND
EXPERIENCE MODULATE THIS
INFORMATION TO ENHANCE ODOR,
OBJECT RECOGNITION AND
DISCRIMINATION AT THE BEHAVIORAL
COGNITIVE AND NEURAL LEVELS.
HE'S RECEIVED GRANT FUNDING FROM
NIH AND OTHER ORGANIZATIONS AND
HE'S BEEN AN ACTIVE NIH REVIEWER
AND IS SENIOR EDITOR FOR THE
JOURNAL OF NEUROSCIENCE. DR.
GODFRY.
>>THANK YOU, I PROBABLY USE
MORE WORDS THAN I NEEDED TO. BUT
I'M VERY PLEASED TO BE HERE. IF
THERE WERE ANYTHING TO ADD I
JUST SAY THIS POINT MY RESEARCH
IS FOCUSING ON KIND OF
MULTI-MODAL PERSPECTIVE WHERE WE
ARE DOING ANYTHING FINAL
FUNCTIONAL IMAGING TO
INTRACRANIAL EEG RECORDINGS AND
EVEN NOW TRYING TO DEVELOP MOUSE
MODEL OF THE INTERACTIONS
BETWEEN SOUNDS AND SMELLS IN THE
(INAUDIBLE).
>>THANK YOU. MS. KIMBERLY
(INAUDIBLE) IS EXECUTIVE
DIRECTOR AT THE DYSPHONIA
INTERNATIONAL AND SHE WAS
PREVIOUSLY DIRECTOR WITH THE
AMITA HEALTH NEUROSCIENCES
INSTITUTE. SHE IS A SEASONED
PROFESSIONAL WITH 20 YEARS
EXPERIENCE IN LEADERSHIP AND
NON-PROFIT FIELD WITH PATIENT
ADVOCACY GROUPS AND RARE
DISEASES WITH FOCUS ON THE VOICE
OF THE COMMUNITY BEING
REPRESENTED THROUGH THE PROGRAMS
THAT THE ORGANIZATION. SHE IS
RESPONSIBLE FOR DEVELOPING AND
IMPLEMENTING PROGRAMS RELATED TO
RESEARCH, AWARENESS, SUPPORT AND
EDUCATIEDUCATION. SHE WORKS WITH
SCIENTIFIC AND MEDICAL ADVISORY
BOARD TO EXPAND THE RESEARCH
PROGRAM. SHE SERVES AS THE
PATIENT ADVOCACY LIAISON FOR THE
DYSTONIA COALITION AND WRITTEN
MORE THAN 50 ARTICLES RELATED TO
VOICE DISORDERS.
>>THANK YOU SO MUCH. IT IS AN
HON MORE TO BE PART OF THIS I'M
EXCITED TO LEARN MORE AND HELP
REPRESENT THE VOICE OF THE
PEOPLE WHO ARE LIVING WITH THESE
LIFE ALTERING DISORDERS. THANK
YOU.
>>THANK YOU. NEXT IS DR. JOSE
PENA, A PROFESSOR DOMINIQUE
DEPARTMENT OF NEUROSCIENCE AT
ALBERT EINSTEIN COLLEGE OF
MEDICINE. HIS RESEARCH INVOLVES
INVESTIGATING THE BRAIN AND HOW
INFORMATION IS PROCESSED AND
REPRESENTED HE STUDIES THE
AUDITORY SYSTEM WITH FOCUS ON
NEURAL CODING. HE RECEIVED GRANT
FUNDING BY NIH SINCE 2005 AND
BEEN ACTIVE GRANT REVIEWER FOR
NIH AND OTHER AGENCIES FOR MANY
YEARS. HE'S ALSO A JOURNAL
REVIEWER FOR JOURNAL SUCH AS
JOURNAL OF MEDICINE.
>>(INAUDIBLE) I WORK ON
PROJECTS ARE INVESTIGATED WITH
BRAIN (INAUDIBLE) STATISTICAL
(INAUDIBLE) WE ARE
INVESTIGATING.
>>THANK YOU.
>>DR. LARRY TRUSSLE, PROFESSOR
ASSOCIATE DIRECT FOR FOR
LARYNGOLOGY DEPARTMENT OF
LARYNGOLOGY OREGON RESEARCH
HEARING CENTER AT OREGON HEALTH
AND SCIENCE UNIVERSITY. HE IS
BOTH Ph.D. IN BIOLOGY. HIS
RESEARCH IS FOCUSED ON THE
NEUROSCIENCE OF HEARING AND
BALANCE. SPECIFICALLY HIS
INTEREST AREAS OF INTEREST
INCLUDE BRAIN STEM CIRCUITS THAT
PROCESS ACOUSTIC SIGNALS AND
SYNAPTIC (INAUDIBLE). HE HAD
NUMEROUS GRANTS FROM NIH AND
REVIEWER AND EDITOR FOR MANY
JOURNALS OF NEUROSCIENCE. IN
2022, HE RECEIVED THE DISCOVERY
AWARD FROM OREGON MEDICAL
RESEARCH COUNCIL.
>>THANK YOU. PLEASURE TO BE
HERE AND MEET ALL OF YOU AND
GREAT HONOR TO BE PART OF THIS
PROCESS.
>>THANK YOU. WELCOME TO ALL
COUNCIL MEMBERS INCLUDING THE
NEW MEMBERS AND OUR AD HOC
MEMBERS. VERY HAPPY TO HAVE YOU
SO NEXT IS THE MINUTES FROM THE
MAY 18 TO 19 NIDCD ADVISORY
COUNCIL MEETING. ARE THERE
ADDITIONS OR CORRECTIONS? TO THE
MEETINGS? HEARING NONE IS THERE
A MOTION THEY BE APPROVED AS
WRITTEN? THANK YOU. THESE ARE
THE DATES OF THE UPCOMING 6
ADVISORY COUNCIL MEETINGS.
DISCUSSED PREVIOUSLY JANUARY
MEETING WILL ALWAYS BE HELD
VIRTUALLY AND SO WE ARE
SCHEDULED TO HAVE THAT MEETING
JANUARY 25 AND 26TH. OUR NEXT IN
PERSON MEETING WILL BE IN MAY ON
THE 16TH AND 17TH SO PLEASE
REVIEW THE DATES AND IF YOU SEE
ANY MAJOR CONFLICTS OR PROBLEMS
PLEASE DO LET US KNOW. NOW I
WOULD LIKE TO PROVIDE SOME
UPDATES. THE FIRST HAS TO DO
WITH THE BUDGET. FIRST YOU KNOW
DOUBT HEARD ABOUT THE GREAT
CONCERNS ABOUT THE BUDGET AND SO
WE ARE IN A SITUATION NOW WHERE
OF COURSE WE DO T NOT HAVE THE
BUDGET FOR THE FISCAL YEAR 2023
WHICH OR 2024 WHICH BEGINS
OCTOBER 1ST. CONGRESS IS DUE TO
COME BACK SOON. BETWEEN NOW AND
OCTOBER 1ST THERE ARE THREE
POSSIBLE OUTCOMES, ONE IS THE
BILL TO PASS THE BUDGET. SECOND
IS THEY WILL NOT PASS THE BUDGET
BUT PASS A CONTINUING
RESOLUTION. AND THIS WILL
CONTINUE SORT OF UNTIL THE END
OF THE YEAR. AND THEN THE THIRD
IS THAT THE GOVERNMENT WILL SHUT
DOWN WHICH IS ALWAYS SOMETHING
THAT NONE OF US WANT TO HAVE
HAPPEN. WE ARE NOT ALLOWED TO
CONTINUE OUR WORK IF THE
GOVERNMENT SHUTS DOWN. BANNED
FROM EMAIL OR DOING ANY WORK SO
THAT'S THE LEAST DESIRABLE OF
THESE OUTCOMES. AS PARTS OF THE
FEDERAL DEBT LIMIT NEGOTIATIONS
IT WAS DETERMINED THAT THE
BUDGET COULD ONLY INCREASE 1% IN
FISCAL YEAR 2025, BECAUSE OF THE
RESTRICTIONS THAT ARE BASED ON
THOSE NEGOTIATIONS WE EXPECT TO
HAVE RELATIVELY FLAT FUNDING FOR
AT LEAST THE NEXT COUPLE OF
YEARS. THE FUNDING TEST REALLY
TIE THE HANDS OF CONGRESS. THEY
HAVE THE SENATE AND THE HOUSE
BOTH RELEASED THEIR BUDGETS WITH
VERY MODEST INCREASES AND
DECREASES IN ANY SITUATION SO
THE SENATE APPROPRIATIONS
INCLUDE A SMALL INCREASE OF 265
MILLION TO THE TOTAL NIH BUDGET
FOR VERY SPECIFIC INITIATIVES
THAT ARE IN FEDERAL INSTITUTES
AND CENTERS. THIS IS IN THE
BACKGROUND OF THE TOTAL NIH
BUDGET WHICH IS ABOUT $50
BILLION, CERTAINLY VERY MODEST
INCREASE PARTICULARLY WHEN YOU
CONSIDER THE EFFECTS OF
INFLATION. THAT BILL LEFT MOST
INSTITUTES AND CENTERS INCLUDING
OURS AS FAR AS WE CAN TELL FLAT,
FLAT BUDGET COMPARED TO FY 2023
ON THE HOUSE SIDE SEVERAL
MEMBERS OF THE HOUSE MAJORITY
PUSHED FOR DEEPER CUTS INTO THE
FEDERAL BUDGET. AS A RESULT OF
THE HOUSE SUBCOMMITTEE BILL
INCLUDED REDUCTION TO THE NIH
BUDGET OF MORE THAN $3.7 BILLION
THAT IS FOCUSED ON SEVERAL
SPECIFIC NIH INSTITUTES AND
CENTERS AND RESEARCH PROGRAMS
THAT AGAIN LEADS MOST INSTITUTE
AND CENTER BUDGET LEVELS FLAT
COMPARED TO THE CURRENT FISCAL
YEAR. AS FAR AS WE CAN TELL THE
BUDGET FOR NIDCD WILL BE FLAT
COMPARED TO THE CURRENT FISCAL
YEAR. TOMORROW, MR. ERIC
WILLIAMS WILL PROVIDE MORE
DETAILS TO THE COUNCIL ON THE
CURRENT BUDGET AT 11:15 A.M.
THEN IN JANUARY WHEN THE
SITUATION IS MORE CLEAR WE PLAN
TO DISCUSS IN MORE DETAIL THE
BUDGET AND HOW BUDGET DECISIONS
WILL BE MADE GOING FORWARD
GIVING THESE CONSTRAINTS. NOW
TO SOME OTHER UPDATES. MANY OF
YOU ATTENDED THE MAY COUNCIL AND
HEARD DR. PATTY BRENNAN, GLAD WE
HAVE HER THERE BECAUSE THE LAST
COUPLE OF WEEKS SHE HAS TO
RETIREMENT. SO PATTY BRENNAN HAS
BEEN A TREMENDOUS CHAMPION OF
BIOMEDICAL SCIENCE ACROSS NIH,
UNDER HER LEADERSHIP THE
NATIONAL LIBRARY OF MEDICINE HAS
BEEN THE EPICENTER OF THIS
ACTIVITY. AT NIH. SHE'S
TREMENDOUSLY CONTRIBUTED TO
THESE PROGRAMS. WHEN SHE SPOKE
AT OUR COUNCIL IN MAY SHE SPOKE
ABOUT THE INAUGURAL NIH DIGITAL
STRATEGY PLAN. AND NOTED THAT
NIDCD COULD SUPPORT STRATEGY BY
IDENTIFYING AND ENABLING
INSTITUTE SPECIFIC TECHNOLOGY
INVESTMENT THAT WOULD ALIGN WITH
THE NIH DATA SCIENCE MISSION. WE
WILL BE HEARING MORE ABOUT DATA
SCIENCE LATER TODAY. WE HAVE A
NEW DIRECTOR OF THE NATIONAL
INSTITUTE OF ALLERGY INFECTIOUS
DISEASES. OR NIAID. DR. TABAK
ANNOUNCED THAT DR. JEANNE
MARRAZZO WILL BE DIRECTOR OF
THAT INSTITUTE. SHE COMES TO US
FROM UNIVERSITY OF ALABAMA
BIRMINGHAM WHERE SHE IS DIRECTOR
OF THE DIVISION OF INFECTIOUS
DISEASES. DR. MARRAZZO RESEARCH
IN DISCOVERY AND IMPLEMENTATION
SCIENCE HAS FOCUSED ON THE HUMAN
MICROBIOME, SPECIFICALLY AS I
RELATES TO FEMALE REPRODUCTIVE
TRACT INFECTIONS AND HORMONAL
CONTRACEPTION. PREVENTION OF HIV
USING BIOMEDICAL INTERVENTIONS
AND PATHOGENESIS AND MANAGEMENT
OF BACTERIAL VAGINAOSIS
SPECIFICALLY DISEASES AND HIV
INFECTED PERSON. IN ANTIBIOTIC
RESISTANCE AND GONORRHEA. SHE'S
PRINCIPLE INVESTIGATOR ON NIH
GRANTS CONTINUOUSLY SINCE 1997
AND HAS SERVED FREQUENTLY AS
PEER REVIEWER AND ADVISORY
COMMITTEE MEMBER. DR. MARRAZZO
BEGINS HER ROLE AS NIAID
DIRECTOR IN THE FALL, LIKELY
SOMETIME IN OCTOBER WHERE SHE
WILL OVER SEE NIAID BUDGET OF
$6.3 BILLION, SO IT IS ONE OF
THE BIGGER NIH INSTITUTES. THE
INSTITUTES OF COURSE RESEARCH TO
ADVANCE UNDERSTANDING DIAGNOSIS
AND TREATMENT IN INFECTIOUS
IMMUNOLOGIC AND ALLERGIC DISEASE
SO LOOK FORWARD TO WELCOMING.
THEN IN OUR OWN NIDCD WE ARE
VERY, VERY PLEASED TO WELCOME
DR. GAYLA POLING WHO WILL JOIN
LATE OCTOBER AS NEW CHIEF
RESEARCH AUDIOLOGIST IN THE
NIDCD AUDIOLOGY UNIT. THROUGHOUT
HER CAREER DR. POLING STUDIED
AND DEVELOPED DIAGNOSTIC
APPROACHES FOR THE EARLY
DETECTION AND PREVENTION OF
HEARING LOSS CAUSED BY AGING,
NOISE AND OTO TOXIC MEDICATION.
IN HER ROLE AT THE MAYO CLINIC
SHE SERVED AS THE CHAIR OF THE
ONE MAYO AUDIOLOGY SUBJECT AND
SUBJECT MATTER EXPERT FOR THE
PLUMBER EXPERT A MASSIVE EXPERT
TO UNITE ALL MAYO LOCATIONS ON
ONE ELECTRONIC HEALTH RECORD AND
MANAGE SYSTEM. SHE CHAMPIONED
CONTINUOUS ADVANCEMENT IN
ELECTRONIC HEALTH RECORDS AND
AUDIO LOGICAL DATABASE
DEVELOPMENT WHICH IS HUGELY
BENEFICIAL TO OUR AUDIOLOGY UNIT
WHICH CON PAINS A HUGE AMOUNT OF
DATA FROM MANY, MANY YEARS OF
RESEARCH. AT THE NIH NIDCD
AUDIOLOGY UNIT DR. POLLING LEADS
RESEARCH AND CLINICAL
LABORATORY. THE AUDIOLOGY UNIT
IS A KEY COMPONENT OF THE NIH
CLINICAL CENTER. IT PROVIDES
HEARING AND BALANCE EVALUATION
CLINICAL STUDY PARTICIPANTS
INCLUDING ADULT AND PEDIATRIC
PATIENTS WITH RARE DISEASES AS
WELL AS PATIENTS TAKING LIFE
SAVINGS OF POTENTIALLY OTO TOXIC
DRUG TREATMENT. THIS RECRUITMENT
IS RESULT OF NATIONAL SEARCH
WHICH FOLLOWS THE RETIREMENT OF
DR. CARMEN BREWER IN OCTOBER OF
2022. AND I WANT TO EXPRESS MY
EXTREME GRATITUDE TO DR.
CHRISTOPHER ZALENSKY AND DR.
JULIE CHRISTIANSON WHO SERVED AS
ACTING CO-CHIEF RESEARCH
AUDIOLOGISTS SINCE THAT TIME. SO
YOU HAVE HEARD IN THE PAST FROM
OUR FIRST CHIEF DIVERSITY
OFFICER DR. ROBINSON. SHE HAD A
VERY BUSY YEAR SO THIS MARKS ONE
YEAR SINCE JOINING THE INSTITUTE
AND BUSY AND PRODUCTIVE. SO
SHE'S HELPED TO COORDINATE IN
SEVERAL EFFORTS, ONE HAS BEEN
FOR PARTICIPATION IN HELPING US
TO IDENTIFY THE BEST
OPPORTUNITIES TO ADVANCE SCIENCE
IN OUR IN NOTICES OF FUNDING
OPPORTUNITIES. SO WE PARTNERED
WITH THE UNITE INITIATIVE ON
SOME OF THESE. SHE ALSO HELPED
PROMOTE THE NIDCD DEIA FOCUSED
FUNDING OPPORTUNITIES SUCH AS
RESENT RO1 FOR NEW INVESTIGATORS
TO PROMOTE WORK FORCE DIVERSITY
AND THE NIDCD HEALTH DISPARITIES
INHE INEQUITIES RESEARCH PROGRAE
HAS DONE A GREAT DEAL OF WORK
WITH OUR INTERNAL WORK FORCE, SO
SHE'S BEEN PART OF OUR INTERNAL
WORKING GROUP THAT HAS ADDRESSED
ISSUES OF DIVERSITY EQUITY
INCLUSION AND ACCESSIBILITY,
THAT IS A VERY ACTIVE PROGRAM
ACROSS THE INSTITUTE INVOLVING
ALL STAFF MEMBERS WHO WANT TO
PARTICIPATE. SO IT IS A VERY
ROBUST EFFORT. LAST SHE
PARTICIPATED IN A LARGE NUMBER
OF CONFERENCES TO MAKE SURE THAT
THE SCIENTIFIC COMMUNITY
PARTICULARLY THOSE WHO ARE
UNDER-REPRESENTED AND LESS
LIKELY TO BE PLUGGED IN TO THE
RESEARCH TRAINING AND MENTORING
INFRASTRUCTURE TO LET THEM KNOW
ABOUT THE PROGRAMS THAT NIDCD
HAS SHE PRESENTED AT NUMBER OF
CONFERENCES INCLUDING A
CONFERENCE WITH NETWORK FOR
BLACK INDIGENOUS AN PERSONS OF
COLOR, RESEARCHERS AND
CLINICIANS AND COMMUNICATIONS
SCIENCES AND DISORDERS, THE
NATIONAL BLACK ASSOCIATION NOR
SPEECH LANGUAGE AND HEARING. SHE
PRESENTED AT THE AUDITORY
AMERICAN ODDTORY SOCIETY MEETING
LAST MARCH, ALSO DONE ONLINE
COFFEE HOUR FOR THE DIVERSITY
AND MINORITY EXPAND COMMITTEE.
SO WE ARE REALLY GRATEFUL FOR
HER WORK THAT SHE'S BEEN
DELIGHTFUL TO WORK WITH. AS PART
OF OUR PLANS TO FURTHER EDUCATE
THE RESEARCH COMMUNITY AS WELL
AS PROMOTE OUR STRATEGIC PLAN
THAT WAS RELEASED AT THE END OF
LAST YEAR, WE HAVE STARTED A
NIDCD DIRECTOR SEMINAR SERIES
AND THE FIRST SEMINAR IN THIS
SERIES WAS IN LATE JUNE. THAT
WAS ROD CALIFF COMMISSIONER FDA
WHO SPOKE WITH US ABOUT
TECHNOLOGIES AND OTHER VOIR DIRE
VANCES RELATED TO NIDCD MISSION
AREAS IN THE WAY WE DEVELOP THAT
SEMINAR WAS TO HAVE HIM SPEAK
FOR A PERIOD OF TIME THEN
INVITED DISCUSSANS ACROSS NIH TO
PARTICIPATE AND ASK QUESTIONS
AND HAVE DISCUSSION WITH HIM AND
THAT WAS A SUCCESSFUL AND WELL
RECEIVED SEMINAR SO WE DECIDED
TO CONTINUE ALONG IN THE SAME
WAY TO INCLUDE SOME DISCUSSION
AFTER THE PRESENTATION. THE NEXT
PRESENTATION WHICH WILL BE
OCTOBER 25TH IS A HYBRID
LECTURE. OPEN TO NIH STAFF,
EXTRAMURAL RESEARCHERS AND THE
PUBLIC. DR. ADAM RESNICK
DIRECTOR OF THE CENTER FOR DATA
DRIVEN DISCOVERY AND BIOMEDICINE
AT THE CHILDREN'S HOSPITAL
PHILADELPHIA WILL BE SPEAKING
AND HIS TALK IS ENTITLED FROM
DATA SETS TO DATA PLATFORMS TO
DATA ECOSYSTEMS. THE EMERGING
LANDSCAPE OF COLLABORATIVE CROSS
DISEASE DISCOVERY AND
ACCELERATED CLINICAL
TRANSLATION. SO THIS VERY MUCH
FITS IN WITH HER OUR STRATEGIC
PLAN, PRECISION MEDICINE AS WELL
AS BIOMEDICAL DATA SCIENCE. WE
HAVE INVITED DISCUSSANTS, THE
DISCUSSION WILL BE LED BY DR.
GIBBSBURG DIRECT FOR FOR ALL OF
US RESEARCH PROGRAM. DR. JOSH
LEVY CLINICAL DIRECTOR WILL
PARTICIPATE AS WELL AS OTHER
DISCUSSANTS. SO I'M VERY MUCH
LOOKING FORWARD TO THAT AS AN
EXCITING AND VIBRANT SEMINAR AND
DISCUSSION. SO ENDING WITH
TODAY'S AGENDA, WE WILL HAVE
PRESENTATIONS ON DATA SHARING
AND DATA SCIENCE FOLLOWED BY A
PRESENTATION BY DR. KELLEY KING
ON MEANINGFUL OUTCOME MEASURES
AND ADULTS WITH HEALTHCARES WE
THE NATIONAL ACADEMY OF
MEDICINE. WE WILL THEN HEAR FROM
DR. VALENTINA PARMA WHO WILL BE
SPEAKING ON FROM PANDEMIC TO
PRACTICE, COVID-19 AND THE CASE
FOR UNIVERSAL TESTING AND THEN
WE WILL HAVE THE OPPORTUNITY TO
HEAR A FEW WORDS FROM RETIRING
HELPFUL NUMBERS. NEXT I WOULD
LIKE TO INVITE TO THE PODIUM OUR
NEXT SPEAKER. AND ANUP MAHURKAR,
DIRECTOR OF SOFTWARE ENGINEERING
AND TECHNOLOGY AT THE UNIVERSITY
OF MARCH MARE INSTITUTE FOR
GENOME SCIENCES. HE HAS
EXTENSIVE EXPERIENCE IN THE
FIELD OF GENOMICS AND HEALTH
SCIENCES AND HIS AREAS OF
EXPERTISE INCLUDE BIOINFORMATICS
TOOL DEVELOPMENT LARGE SCALE
ANALYSIS SYSTEMS, INNOVATES
DESIGN AND HIGH THROUGH PUT
COMPUTING ARCHITECTURE AND
APPLICATION DEVELOPMENT.
MR. MAHURKAR HAS BEEN REALLY
VITALLY IMPORTANT TO OUR MAY
SENT EFFORTS TO THINK ABOUT WHAT
KINDS OF DATA SCIENCE RESOURCES
WE NEED AT NIDCD, HE'S BEEN
CONSULTANT FOR US FOR THE PAST
YEAR AT LEAST AND HE'S BEEN
CONSULTING WITH ME DIRECTLY AND
ALSO WORKING WITH DR. LISA
CUNNINGHAM AND HER GROUP IN THE
INTRAMURAL RESEARCH PROGRAMS TO
HELP THEM IN THEIR APPROACHES TO
DATA SHARING. SO ENORMOUSLY
GRATEFUL TO HIM FOR HIS ADVICE
AND IN LINE LOOK FORWARD TO HIS
COMMENT. AFTER THOSE COMMENTS WE
WILL HEAR FROM DR. LU WANG,
CHIEF OF NIDCR EXTRAMURAL
TRANSLATIONAL GENOMICS RESEARCH
BRANCH. HER BRANCH OVERSEES
FUNDING PROGRAMS SUPPORTING
TRANSLATIONAL GENOMICS AND
GENETICS. DATA SCIENCE AND
DEVELOPMENTAL BIOLOGY RESEARCH
AND PRODUCT DEVELOPMENT. DR. RON
LEADS DATA SCIENCE INITIATIVES
AT NIDCR DENTAL INSTITUTE IN
ORDER TO EXPEDITE TRANSLATIONAL
RESEARCH. SHE ALSO CHAIRS NIDCR
DATA ACCESS COMMITTEES THAT
MANAGE PUBLIC ACCESS TO THE
GENOMIC AND PHENOTYPIC DATA FOR
USE BY NIDCR FUNDED RESEARCHERS
SO WE WILL HEAR FROM HER
VIRTUALLY AND LOOK FORWARD TO
HEARING FROM YOU ANUP. THANK
YOU.
>>THANK YOU CAN YOU HEAR ME?
YEAH? HOW ABOUT NOW? HOW ABOUT
NOW? SEE IF I CAN PROJECT MY
VOICE. DR. TUCCI, THANK YOU FOR
INVITING ME TO SPEAK TO THE
ADVISORY BOARD AND MEMBERS OF
THE BOARD (INAUDIBLE) LITTLE
BACKGROUND SUGGEST LEVELS THAT
(INAUDIBLE) A LITTLE BACKGROUND
WHAT I DO, HEALTHCARE TO
UNDERSTAND WHERE I HAVE BEEN
COMING FROM. I HAVE BEEN IN THE
BIOMEDICAL RESEARCH FIELD FOR 30
YEARS AND (INAUDIBLE) ABOUT 35
YEARS. DOING THE SCIENCE PUTTING
IN THE LAST TEN YEARS WHAT HAS
BEEN DOING AT THE UNIVERSITY OF
MARYLAND IS TO TRY REPOSITORIES
FOR BIOMEDICAL DATA (INAUDIBLE)
GENOMIC DATA. THAT'S THE
BACKGROUND FROM -- THAT'S MY BIO
SO JUST TO BE AWARE OF IT.
(INAUDIBLE) REPOSITORY FOR THE
BRAIN INITIATIVE, AND THE OTHER
PROJECT COMMON FUND HAS PROJECT
IN THE FUNDING ECOSYSTEM TRYING
TO BUILD ECOSYSTEM OF ANOTHER
DIFFERENT DATA FORMATION CENTERS
WHO MANAGE (INAUDIBLE). -WILL
ALSO GO WITH WHAT DR. RESNICK
WILL TALK TO YOU ABOUT IN
OCTOBER. SO THE FIRST PART IS
THREE TALKS. THE FIRST IS A
LITTLE BACKGROUND WITH HISTORY
OF NIH AND HOW THAT IS WITH WHAT
WE DO TODAY. THE SECOND PART IS
GIVES YOU A FLAVOR OF THE
DIFFERENT MODEL PEOPLE HAVE IN
DIFFERENT (INAUDIBLE) FOR HOW TO
SHARE THE DATA BECAUSE THAT'S
RESPONDING TO THE MANDATE OF
DATA SHARING. TO HAVE A
SUCCESSFUL DATA REPOSITORY DATA
STANDARD ARE VERY CRITICAL. SO
I'LL TALK A LITTLE BIT ABOUT THE
DATA STANDARD AND HOW THOSE
ININFLUENCE HOW WE SHARE THE
DATA. SO WHAT IS DATA SHARING.
THIS IS COPY FROM THE NIH
WEBSITE BUT IT IS THE ACT OF
MAKING SCIENTIFIC DATA AVAILABLE
FOR USE BY OTHERS, ESTABLISH
REPOSITOREPOSITORY. SO THAT'S TE
IMPORTANT PART. AND SO THE
EPIPUT FOR DATA SHARING CAN BE
TWO PERSPECTIVES. ONE IS
DEVELOPED BY SCIENCE. AND SO
WHAT THE SCIENTIFIC REASONS FOR
SHARING DATA AND THE SECOND IS
POLICY DECISIONS.S. SO FROM A
SCIENTIFIC SIDE FIRST
(INAUDIBLE) ESSENTIALLY NEED TO
HAVE THE DATA AVAILABLE
(INAUDIBLE) YOUR FINDINGS.
PRIMARY DRIVERS OF THE DATA
SHARING, THE SECOND ONE IS LOT
OF RESEARCH IS BEING DONE BY
PUBLIC FUNDING SO THE IDEA THAT
YOU WANT TO RESPOND TO PUBLIC
FUNDING AND MAKE THE DATA
AVAILABLE TO THE WIDER PUBLIC TO
REVIEW IT. THIRD POTENTIALLY --
GENERATING TREMENDOUS BACKGROUND
TYPICAL FOCUS OF RESEARCH TENDS
TO BE VERY NARROW HYPOTHESIS
(INAUDIBLE) OTHERS CAN USE THE
DATA FOR OTHER REASONS AND THAT
IS WHY MAKING IT VAIL TO BELIEVE
THE WIDER COMMUNITY IS
IMPORTANT. NEXT WOULD BE FOR
ALLOWING DATA REPORTING AND
PARTICULARLY TODAY'S DAY AND AGE
WHERE ARTIFICIAL INTELLIGENCE
AND MACHINE LEARNING ARE SORT OF
ABOUT TO TAKE OFF, IT'S
IMPORTANT TO HAVE LARGE UNBIASED
DATA SETS WE CAN PLAY OUR MODELS
ON AND FOR THAT REASON WE WANTED
TO MAKE IT EASY TO PULL EXISTING
DATA BECAUSE PERSPECTIVE DATA
COLLECTION IS PRETTY EXPENSIVE
SO LEVERAGE WHAT'S ALREADY BEING
DONE AND TO POOL THE DATA SHARE
THE DATA SO WE CAN PULL IT. WE
ALSO LOWERED THE COST,
(INAUDIBLE) SO WE CAN REUSE IT.
OVERALL REDUCING THE COST OF
RESEARCH AND THAT'S ART
IMPORTANT FACTOR FROM A CENTERED
PERSPECTIVE TO LOWER THE NEW
DISCOVERY. OF COURSE WE KNOW
PUBLICATIONS THAT REQUIRE US TO
SHARE THE DATA SO THAT IS
ESSENTIALLY BECOMES THE CURRENT
INPUT AS FAR AS TO SHARE THE
DATA. AND FINALLY TREATING THE
NEXT GENERATION OF DATA
SCIENTISTS THEY NEED A CONCEPT
WHICH THEY CAN LEARN AND APPLY
TECHNOLOGIES THAT IS THE REASON
WHY YOU WANT TO ESSENTIALLY HAVE
DATA SHARING POLICY AND MAKE
DATA AVAILABLE TO THE WIDER
SCIENTIFIC COMMUNITY. SO JUST A
I WILL BIT FROM A SCIENTIFIC
POLICY IMPETUS. BACK IN 2003,
IS WHEN THE FIRST DATA SHARING
POLICY FROM NIH WENT INTO
EFFECT. IT ACTED MOSTLY LARGE
GRANTS, GRANTS WITH AT LEAST
$500,000 IN DIRECT FUNDING IN A
SINGLE YEAR WHICH MEANS THAT
MOST RO1 FUNDING WAS EXEMPT FROM
THIS DATA SHARING REQUIREMENT IN
2003. (INAUDIBLE) HAVE THEIR OWN
POLICIES AND REQUIRED PEOPLE TO
SHARE THE DATA AND PUBLICATIONS
BUT THERE WASN'T NECESSARILY NIH
MANDATE TO SHARE THE DATA IN
2003. IN 2015 THIS WAS FOR
FOLLOWED WITH WHAT'S THE GENOMIC
DATA SHARING POLICY AND THIS
POLICY WAS THE FIRST IN THESE
DAYS GENERATING GENOMIC
SEQUENCES WASNESS PENSIVE SO
THIS (INAUDIBLE) AND IT REQUIRED
THAT ALL NIH FUNDED RESEARCH
LARGE HUMAN OR NON-HUMAN GENOMIC
DATA REQUIRED TO SHARE THE DATA
AND (INAUDIBLE) OF FUNDING
CRITERIA, BUT THE GENERAL
GUIDELINES FOR SAY YOU ARE
WORKING ONE GENE OR REGION
COUPLE OF THOUSANDS PARTICIPANTS
AND YOU ARE REQUIRED TO SHARE
YOUR DATA. SO THAT'S (INAUDIBLE)
TO SHARE THE DATA. WORKING WITH
THE WHOLE GENOME WHICH CASE MORE
THAN 100 PARTICIPANTS REQUIRED
TO SHARE YOUR DATA. SO MOST
PEOPLE TOOK A VERY PROACTIVE
APPROACH AND FROM THE GENOMIC
FIELD WE ARE SHARING DATA FOR A
LONG TIME AND THIS IS FUNDED --
BY NATIONAL LIBRARY OF MEDICINE
BECAUSE NCBI IS THE GENOMIC
DATA. SO WE SHARING DATA FOR
MUCH MORE THAN BACK IN 2015 BUT
THE POLICY WENT INTO EFFECT IN
2015. FOR THE INDIVIDUAL IT IS
MORE RESTRICTIONS POLICIES ABOUT
DATA SHARING WHETHER IT'S PRIEF
TO SHARE THE RESEARCHERS TO
REQUIRE TO SHARE THE DATA
WIDELY. SO THIS YEAR ANOTHER NEW
POLICY WENT INTO EFFECT THAT'S
AFFECTING A LOT OF RESEARCHERS
AND THIS REQUIRES ALL RESEARCH
CONDUCTED IN WHOLE OR PART BY
NIH THAT RESULTS IN THE
GENERATION OF SCIENTIFIC DATA
NEEDS TO BE SHARED. AND WHAT IT
MEANS IS THIS INCLUDES RESEARCH
FUNDING CONDUCTED BY EXTRAMURAL
GRANTS, CONTRACTS, INTRAMURAL
RESEARCH AND FUND AGREEMENTS
REGARDLESSLESS OF FUNDING LEVEL
OR MECHANISM SO THAT IS
SOMETHING NEW. WE HAVE ARE
ALREADY IN THE GENOMIC FIELD
APPLIED ON NIH RESEARCH AND IT
ESTABLISHES PEGGATION FOR
MAXIMIZING THE APPROPRIATE
SHARING OF SCIENTIFIC DATA. THIS
IS A LOT OF (INAUDIBLE) AROUND
IT AND SOMETHING (INAUDIBLE) AND
I DON'T THINK I'M IN A POSITION
TO DISPEL THAT BUT WANTED TO
HEAR THAT I HAVE HEARD LOTS OF
WHEN I SPEAK TO PEOPLE THAT
THERE'S A LOT OF CONFUSION WHAT
NEEDS TO BE SHARED. SO WHEN WE
LET'S START AT LEAST DISCUSSING
WHAT IS THE SCIENTIFIC DATA SO
ACCORDING TO THE OLD GUIDELINES
THE DEFINITION OF SCIENTIFIC
DATA IS RECORDED FACTUAL
MATERIAL COMMONLY ACCEPTED IN
THE SCIENTIFIC COMMUNITY AS
SUFFICIENT QUALITY TO VALIDATE
AND REPLICATE THE RESEARCH
FINDINGS. REGARDLESS WHETHER
THAT DATA ARE USED TO SUPPORT
SCHOLARLY PUBLICATIONS. SAY YOU
ARE RUN AN EXPERIMENT AND
THERE'S NO SIGNIFICANT FINDINGS
YET TO BE PUBLISHED BY STILL
USEFUL DATA SET. BEFORE THOSE
PEOPLE WERE NOT REQUIRED TO
SHARE THE DATA AND NOW IN THIS
NEW POLICY YOU ARE EXPECTED TO
SHARE THE DATA. AND THAT'S NEW
SET UP AND DIFFERENCE BETWEEN
WHAT WAS SHARED BEFORE AND WHAT
IS BEING SHARED NOW. WHAT IS NOT
REQUIRED TO BE SHARED, YOU DON'T
NEED TO SHARE YOUR LAB NOTE
BOOKS OR YOUR PRIMARY ANALYSIS,
THE POLICIES NOBODY'S STOPS YOU
FROM SHARING THAT, BUT IT'S NOT
REQUIRED. SO THESE ARE SOME OF
THE THINGS THAT THE NEW POLICY
DOES NOT REQUIRE TO SHARE. SO
WHAT IS THE NEW DATA, SHARING
POLICY, WHAT ARE SOME OF THE
CONSIDERATIONS, MANAGEMENT HAS
BEEN AROUND SINCE 2003 AND
THERE'S BEEN INVESTMENT BY NIH
AND OTHER AGENCIES ININCLINED TO
MAKE DATA SHARING EASY. LOT OF
RES ARETORIES HAVE BEEN BUILT TO
RESPOND TO MANDATES. PART OF THE
NATIONAL LIBRARY OF MEDICINE
REPOSITORY AND AS OF YESTERDAY
THERE WERE 138 SPECIALIZED
REPOSITORIES THAT EXIST. THAT
ARE FUNDED BY NIH THAT TAKE
DIFFERENT TYPES OF (INAUDIBLE).
SO THE (INAUDIBLE) UNDER
PARTICULAR DATA YOU CAN PROBABLY
FIND REPOSITORY THAT CAN TAKE
THAT BACK (INAUDIBLE) IN
ADDITION TO THE (INAUDIBLE)
SPECIALIZED REPOSITORY THERE
WERE NINE GENERALIST
REPOSITORIES, PARTICULAR
PROJECT. SO THE IDEA WE CAN
LEARN FROM THESE PRACTICES IN A
SINGLE REPOSITORY WHEN IT COMES
TO HOW DO WE WANT (INAUDIBLE)
NIDC TO SHARE THE DATA. SHARE
WITH YOU COUPLE OF MODELS THAT
EVOLVED THE LAST 10, 15 YEARS.
HOW PEOPLE SHARE THE DATA, THESE
ARE PRIMARILY DRIVEN BY THE IT
AND ONE OF THE FUND MECHANISMS
WERE AND WHAT PRIORITIES WERE SO
THE SAME AMOUNT OF WORK IN NIH
AND REPOSITORY THAT ARE STILL
THE LAST SIX MONTHS, EIGHT
MONTHS AND ALSO FROM A DIFFERENT
BACKGROUND. SO WHEN I THINK
ABOUT DATA PARTICULARLY USEFUL
TOOL FOR ME AT LEAST IS TO THINK
ABOUT THE EXDIKW PYRAMID. IT WAS
PUBLISHED IN 2007 BY -- SO THINK
ABOUT A PYRAMID WHERE THE
HIERARCHY WHERE THE DATA SITS ON
THE BOTTOM AND SLOWLY ADDING TO
THE DATA AS YOU TURNING IT INTO
INFORMATION AND THE INFORMATION
IS KNOWLEDGE AND KNOWLEDGE IS
WAS DOCUMENT WHICH IS HOPEFULLY
(INAUDIBLE) AT LEAST WITH THE
KNOWLEDGE MODELS COMPETING RIGHT
NOW. SO THINK ABOUT THE DIKW IT
HELPS TO LOOK AT EXAMPLES. IN
THE MOLECULAR BIOLOGY, WHEN YOU
THINK ABOUT DATA, THINK ABOUT
THE GENOME SEQUENCING, GENE
EXPRESSION. GENOMICS, PEOPLE'S
DATA FOR USE IN THAT DATA. AND
WHEN YOU TRANSFORM AND ANALYZE
IDENTIFY THE SNPS IN THE DATA,
THE GENE EXPRESSION COMES,
THAT'S WHAT I CONSIDER
INFORMATION. FROM INFORMATION TO
KNOWLEDGE, TO ADD MORE VALUE, BE
LOOKING TO SEE WHETHER HYPO OR
HYPERMETHYLATION CHARACTERS,
KNOWLEDGE, (INAUDIBLE) GENE OR
EXPRESS OR REPRESENTED IN A
PARTICULAR CONDITION THAT'S KIND
OF KNOWLEDGE. SO THAT'S HOW THE
HIERARCHY BUILT UP AND WITH
IMAGING MODALITY THINK OF MRI
IMAGES AND FROM THAT MAYBE APPLY
MACHINE LEARNING ALGORITHMS,
AUTOMATED SYSTEMS TO IDENTIFY
BRAIN REGIONS AND TAKING THAT
DATA AND EXTRACTING THE
INFORMATION FROM THAT AND
EVENTUALLY YOU ARE GOING TO TAKE
THESE REGIONS OF THE BRAIN
THOUGH THERE ARE DIFFERENCES IN
ACTIVATION OF PARTICULAR BRAIN
REGION IN A PARTICULAR CONDITION
AND THAT IS KIND OF WHERE THE
KNOWLEDGE COMES IN. SIMILARLY IF
YOU LOCK IN THE CLINICAL FIELD
AND EMR AND DATA SELECTED IN THE
HOSPITAL, THAT DATA AND
INCLUDING DEMOGRAPHICS AND FROM
THERE SAY FOR INSTANCE RESTING
HEART IS A GOOD EXAMPLE OF
HEARING SPECIALS, FOR EXAMPLE
IT'S ESSENTIALLY THE
MEASUREMENTS OF DATA AND THEN
WHEN YOU SORT OF TALK THERE'S
HEART RATE YOU'VE MEASURED IS
THE RESTING HEART RATE THAT
BECOMES INFORMATION AND THEN
WHEN YOU TRANSFORM INTO
KNOWLEDGE IS THE HEARING LOSS
AND IN THE CONTEXT OF AGE AND
SEX AND OTHER EXPORTER, THAT'S
THE KIND OF KNOWLEDGE ASPECT BUT
SAY IF YOU ARE LOOKING AT
RESTING HEART RAY AND INDIVIDUAL
LOOKING AT THE RESTK -- SO
THAT'S KIND OF WHERE THE
KNOWLEDGE BUILDS IN MANY. YOU
THINK ABOUT DATA TYPE AND
SHARING AND INFORMING THE DATA.
SO TO MATCH WITH THAT, IF YOU
THINK ABOUT REPOSITORY,
REPOSITORIES HAVE FOLLOWING
DIFFERENT SPECTRUM, THEY ADDRESS
THE DATA, INFORMATION ASPECT OF
IT, OF THE KNOWLEDGE ASPECT OF
IT. FOR INSTANCE WHEN YOU THINK
ABOUT DATA, WE HAVE NCBI
SEQUENCING ARCHIVE WHICH IS
GENOMIC DATA LIVE. THERE ARE
DATA. SO THAT'S GOING TO BE DATA
LEVEL REPOSITORY IS DESIGNED TO
ACT GENOMIC DATA. LOOK AT
(INAUDIBLE) DATABASE EMBPIAR,
WHERE YOU DEPOSIT RAW IMAGING
DATA FROM MICROSCOPY OR PROTEIN
STRUCTUSTRUCTURE. SIMILARLY A CE
OFFER O PLACES WITH DATABASES
THERE ARE GENERALIZED
REPOSITORIES THAT TAKE ANY KIND
OF DATA AND THAT MOSTLY RAW DATA
THAT CAN ALSO HANDLE INFORMATION
AS WELL AS ADDITIONAL
INFORMATION. IF YOU GO UP THE
PYRAMID THE NEXT LEVEL IS WHAT I
CONSIDER SOMETHING LIKE THE GENE
OMNIBUS EXPRESSION OMNIBUS,
SOMEBODY CAN GO AND QUERY TO
LOOK AT THE GENE EXPRESSION
POUNDS RATHER THAN LOOKING AT
THE RAW READS WHICH LEAD TO SAY
PRINCE MICROWAVE OF GENE
EXPRESSION VALUES RATHER THAN
JUST RAW IMAGE COMING. SO THAT'S
WHERE THE INFORMATION COMES IN.
SIMPLY LOOK AT ALL THE SNPS
DIRECTED AND DIFFERENT DATA
SETS. YOU MOVE THE HIERARCHY IN
KNOWLEDGE AND START LOOKING A AT
THE CLINICAL SIGNIFICANCE,
CLINVAR. A COUPLE OF EXAMPLES
WHAT I CONSIDER NOT TRUE
KNOWLEDGE BASES BUT MORE TOWARDS
THAT, OR SOMETHING LIKE GEAR
PLATFORM WHICH IS COMMON IN THE
HEARING FIELD OR THE B DBD
DATABASE FROM IOWA, ALL THIS IS
MOVING INFORMATION TO BUILD THE
KNOWLEDGE BASE SO PEOPLE WITH
HAVE INTERESTING PORTIONS OF THE
DATA RATHER THAN JUST LOOKING AT
THE RAW DATA. SO WHEN YOU THINK
ABOUT REPOSITORIES YOU WANT TO
SAY OKAY WHICH PARTICULAR ASPECT
OF DATA SCIENCE REPOSITORY IS
ADDRESSING IS THE DATA IS IT
INFORMATION OR THAT KNOWLEDGE.
AND THEN I JUST SORT OF PUBLISH
THE SET OF GUIDELINES WHAT ARE
THE REQUIRED CHARACTERISTICS OF
THE REPOSITORIES, I HAVE
HIGHLIGHTED SO IT IS NOT A LONG
LIST DON'T NEED TO GO THROUGH
EACH BUT MAIN ONE DATA
REPOSITORY PROVIDE YOU LONG TERM
SUSTAINABILITY, AND UNIQUE
IDENTIFIER SO WHEN YOU REUSE THE
PUBLISHING, THEN THE UNIQUE
IDENTIFIER BECOMES IMPORTANT
BECAUSE YOU CAN LOOK AT THE
PROVIDENCE OF THE ANALYSIS AND
YOU CAN TRACK IT. MORE IMPORTANT
IS WHAT METADATA THE REPOSITORY
SUPPORT. THE RICHER THE METADATA
THE REPOSITORY SUPPORTS THE MORE
INFORMATION TO TWO WITH THE DATA
SET AS FAR AS POOLING THE DATA,
CREATING IT AND BUILDING CERTAIN
INTERFACES AROUND IT. SIMILARLY
DATA SETS FROM DIFFERENT
RESTRICTIONS, SO YOU WANT TO
MAKE SURE THAT CLEAR USE
GUIDANCE IN THE REPOSITORIES AND
MEANINGFUL USE, ANOTHER
IMPORTANT ASPECT OF THE
REPOSITORY IS THE REPOSITORIES
ARE USED COMMONLY FORMATS WHEN
YOU ARE LOOKING AT GENOMIC DATA
SEQUENCE, PART Q IS KIND OF A
FILE FORMAT WHICH IS UNIVERSAL
AND COMMON, SO THEY SUPPORT IT
OR SUPPORT THE ASEATIC CERTAIN
STANDARD BECAUSE IT MAKES THAT
USE A MORE DIFFICULT SO THESE
ARE SOME OF THE CONSIDERATIONS.
YOU WANT TO KEEP IN MIND WHEN
LOOKING AT REPOSITORIES AND
EVENTUALLY THERE'S REQUIREMENTS
OF REPOSITORIES RELATIVE TO --
WHETHER THERE'S FIDELITY TO
CONTENT AND WHETHER THERE'S A
PLANS FOR BREACH AND DO THEY
CONTROL THE DOWNLOADS AND
WHETHER THEY'RE METRICS FOR THE
DOWNLOADS SO THOSE ARE
ADDITIONAL CONSIDERATIONS FOR
REPOSITORIES WHEN YOU ARE
CONSIDERING THEM FOR HUMAN DATA.
SO THE REPOSITORIES ARE THREE OR
FOUR FLAVORS AND THESE ARE ALL
THE RES TO POWERS THAT ARE --
REPOSITORIES CURRENTLY
ACCEPTABLE BY THE NEW MANAGEMENT
AND SHARING POLICY. THE NEW
POLICY IS CLEAR, YOU CANNOT HAVE
YOUR OWN LAB DISSEMINATING DATA
BECAUSE THAT IS NOT CONSIDERED A
INSTITUTIONAL REPROSTORY. SO
THERE IS SOME INSTITUTES THAT
ARE HAVE A ESTABLISHED
REPOSITORY, HARVARD HAS
SOMETHING OF A DATA VERSE,
DIGITAL REPOSITORY UNIVERSITY OF
MARYLAND DRUM. THISs ARE
INSTITUTIONAL REPOSITORIES WHERE
YOU CAN SUBMIT YOUR DATA AND
ACCEPTABLE BY THE REPOSITORY.
THE SECOND KIND OF REPOSITORY IS
THE GENERALIST REPOSITORIES SO
THEY DON'T SPECIALIZE AND YOU
CAN SUBMIT ANY DATA OR RAW DATA
YOU HAVE OR KNOWLEDGE OR MATTER.
THESE ARE REPOSITORIES THAT ARE
FUNDED AND SUPPORTED BY NIH.
THESE ARE THE NAMES HERE, TO
SUPPORT THIS KIND OF DATA. SO
THEN MOVING ALONG THE SPECTRUM
YOU HAVE SPECIALIZED
REPOSITORIES THAT HAVE BEEN THE
LAST TEN OR 15 YEARS. I WILL
CATEGORIZE TWO MAIN CATEGORIES
ONE IS PARTICULAR DISEASE FOCUS
OR PARTICULAR DOMAIN FOCUS.
ANOTHER EXAMPLE IS THE AFRICAN
AMERICAN PARTNERSHIP DISEASE --
ALZHEIMER'S DISEASE KNOWLEDGE
PORTAL. THIS IS REPOSITORY WHERE
THEY ARE COLLECTING ALL THE DATA
RELATED TO ALZHEIMERS SO ONE
LOCATION TO LOOK AT ALL THE DATA
AND BE ABLE TO DOWNLOAD AND DO
SOMETHING WITH IT SO THIS IS THE
DISEASE OR DOMAIN SPECIFIC
REPOSITORIES. THE OTHER ONES WE
WILL TALK ABOUT LATER IN MY TALK
IS NIDCR IS DATA REPOSITORY
(INAUDIBLE) A SPECIALIZED
REPOSITORY CRANIOFACIAL RESEARCH
COMMUNITY AND SO ESSENTIALLY
THAT BECOMES LIKE A HUB FOR
PEOPLE TO GO COLLECT THE DATA
AND DO SOMETHING WITH IT. THE
OTHER KIND OF SPECIALIZED
REPOSITORIES DATA SOURCES THINK
ABOUT NCBI SEQUENCING ARCHIVE.
THEY ONLY TAKE ONE KIND OF DATA
WHICH IS GENOME SEQUENCING DATA
SIMILARLY NIAID HAS IMM PORT
IMMUNOLOGY DATA SO THESE ARE
SPECIALIZED REPOSITORIES THAT
SPECIALIZE IN ONE PARTICULAR
KIND OF DATA. WHY DO YOU NEED
SORT OF A SINGLE DATA? THE IDEA
IS THAT ESSENTIALLY IF YOU A
SINGLE REPOSITORY FOR A
PARTICULAR KIND OF DATA YOU CAN
BUILD TOOL AROUND IT SO THERE'S
VALUE HAVING REPOSITORIES WHICH
ARE SINGLE DATA SPECIFIC
REPOSITORIES. MOVING UP THE
HIERARCHY, ONCE YOU HAVE ALL THE
DATA REPOSITORIES HANDLING THAT,
WE CAN INCREASINGLY CHALLENGE
FOR RESEARCHERS TO FIND THE DATA
FOR INSTANCE A GOOD EXAMPLE
MIGHT BE IN GENOMIC DATA WHICH
IS LOOKING AT THE CELL TYPES AND
THE IMAGING DATA THAT GOES WITH
IT. ALL OF A SUDDEN YOU HAVE
TWO DIFFERENT REPOSITORIES AND
RESEARCH REPOSITORIES TO ACCESS
THE DATA. SO INCREASINGLY
WORKING TOWARDS ECOSYSTEMS WHICH
IS THE (INAUDIBLE) ECOSYSTEM
WHERE THE DATA IS MANAGED
TOGETHER OR LOOSE ECOSYSTEM
WHERE SEDGELY REPOSITORIES TALK
TO EACH OTHER AND THAT IS WHY WE
CALL IT ECOSYSTEMS. HERE ARE
EXAMPLES OF ECOSYSTEMS, NHLBI
HAS ECOSYSTEM PROVIDED. NCI HAS
CANCER RESEARCH DATA COMMONS,
SOMETHING IN THE NEXT FEW
SLIDES. NHGRI HAS THE GENOMIC
ANALYSIS VISUALIZATION AND
INFORMATICS LAB OR ANVIL, THIS
IS A GENOMICS FOCUS REPOSITORY
FOR TOOLING AND YOU CAN MANAGE
THE DATA AND ALL OF US RESEARCH
HUB ON THE RESEARCH DATA IS
GOING TO BE LIMITED AND YOU CAN
GO AND ACCESS THAT DATA AND THE
LAST ONE IS COMMON FUND DATA
ECOSYSTEM. HERE IT DOES NOT
MAINTAIN THE DATA IT IS MORE A
PORTAL.
SO THE IDEA IS INDEXES ON THE
DATA THAT ARE STORED INTO
INDIVIDUAL DATA REPOSITORIES SO
ESSENTIALLY THE NEW CFDE
RESEARCH PORTAL YOU CAN GO AND
DOWNLOAD THE DATA. SO HERE IS AN
EXAMPLE OF HUB AND SPOKE MODEL.
THIS IS IN THE BRAIN INITIATIVE.
THE INITIATIVE FOURTH LARGEST
SIGNIFICANT DATA MODALITIES.
ONE IS IMAGING WHICH IS A
BUILDING BRAIN IMAGING LIBRARY
IN UNIVERSITY OF PITTSBURG AND
THEN NEMO WHICH IS INVOLVED YAHT
OF MARYLAND WHICH IS WHERE THE
GENOMIC DATA AND THEN HOSTS THE
VOLUME METRIC DATA AND THEN DATA
ELECTROPHYSIOLOGY, THEY DON'T
REALLY TALK TO EACH OTHER THAT
MUCH SO RESEARCH IS INTERESTED
IN DOING DATA RECOVERY THERE IS
A CENTRAL REPOSITORY WHICH IS
BCDC WHICH IS MANAGED BY THE
ALLEN INSTITUTE SO PEOPLE DO GO
THERE AND CENTRAL GATEWAY WHICH
YOU CAN ACCESS THESE INDIVIDUAL
REPOSITORIES INSTEAD OF FULL
INFORMATION AND REPOSITORIES SO
THIS IS THE HUB AND SPOKE MODEL
FOR THE BIG DATA SYSTEMS AND
THAT WORKS BRAIN INITIATIVE. AND
LITTLE CROSS OVER BETWEEN
INDIVIDUAL REPOSITORIES BUT
GENERALLY NOT A LOT. SO THE
NEXT IS THE NCI CANCER RESEARCH
DATA. THEY HAVE A LARGE DATABASE
OF DATA SO DATA SPECIFIC
REPOSITORIES, CDC IS THE GENOMIC
DATA COMMONS THERE THE GENOMIC
DATA FROM NCI IS MANAGED AND THE
CDC WHICH HANDLINGS THE
PROTEOMICS DATA COMMONS HANDLES
THE PROTEOMIC DATA ESSENTIALLY
AND THEY ARE INDEPENDENT
REPOSITORIES WHICH HANDLE THE
DATA TYPES AND THEY ARE TOOLING
AROUND THAT AND THEY SORT OF
TALK TO EACH OTHER AND USE THE
COMMON INFRASTRUCTURE AND COMMON
APIs. BUT THE SPECIALIZED
COMMON REPOSITORIES FOR A
RESEARCHER, IN MULTI-MODAL DATA
IMAGING GENOMICS DATA ON THE
PHYSIOLOGY WE DON'T KNEE THAT
YOU HAVE TO GO TO THREER O FOUR
PLACES TO SEE WHAT AND DOWNLOAD
THEM AND BECOMES A BURDEN ON THE
CHALLENGE FOR SCIENTIST SOTS THE
EFFORTS TO TRY TO CENTRALIZE AND
NCI IS ADDING THE CANCER DATA
AGGREGATOR SO THE IDEA IS YOU GO
TO THE CDA AND RUN A THIRD RUN A
SEARCH AND TELL YOU DIFFERENT
DATA TYPES THAT MIGHT EXIST. SO
THAT'S OOH WHERE THE MODELS
EVENTUALLY MIGRATE TOWARD THAT.
THEN THE OTHER SPECTRUM ONE IS
THE COMMON FUND HUB MAP WHICH IS
NEW PROJECT FROM THE COMMON
FUND, GENERATING DIFFERENT
GENOMICS -- IT'S MASS
SPECTROSCOPY DATA, ALL HANDLED
IN ONE REPOSITORY SEARCH
INFRASTRUCTURE AND BROWSE THE
DATA AND VISUALIZE OUR ANALOGY.
SIMILARLY I MENTIONED ANIMALS
THIS IS PROJECT FROM NHGRI WHERE
THE GENOMIC DATA FROM LARGE
STUDIES ARE DEPOSITED AND PEOPLE
THE USE THE AND ANALYZE THE
VISUALIZE AND IT IS THERE AND
SIMILARLY NIDCR IS A
MULTI-MOLDAL DATA WHERE THERE
ARE MULTIPLE DOMAINS, CAN SUBMIT
THEIR DATA OR MULTIPLE LARGE
FROM APOLOGETICS SUBMIT DATA SO
IT IS NOT ONE PARTICULAR DATA
TYPE. SO THIS IS A GENERAL
FLAVOR OF GENERAL REPOSITORIES
AND HOW DIFFERENT ICs OR
COMMUNITIES ARE BUILDING
REPOSITORIES FOR US TO DEVELOP
AND SORT OF CONSIDER. THEN
COMPARISON FROM THE GENERAL
REPOSITORY WHICH IS SIMPLER TO
USE TAKE ANY TYPE OF DATA FOR
THE WEBSITE, THERE ARE LIMITED
WHOLE LIVE DATABASES
REPOSITORIES AND LIMITED
VISUALIZATION, ALL THE WAY TO
THE RIGHT OF THE CHART TABLE
ESSENTIALLY LOOK AT THE E COMB
SYSTEMS THEY ARE PRETTY
COLLECTION, THEY CAN TAKE ANY
TYPE OF DATA, PEOPLE WORKING
THERE (INAUDIBLE) DATABASE,
(INAUDIBLE) INTEGRATION, SUPPORT
WHICH METADATA BUT THESE ARE
EXPENSIVE TO BUILD. I DON'T KNOW
THE EXACT NUMBER BUT MY GUESS
WOULD BE PROBABLY SPENT TENS OF
MILLIONS OF DOLLARS BUILDING THE
CRDC IF NOT MORE. SO BUILDING
THE ECOSYSTEMS ARE EXPENSIVE. SO
GOING FROM LEFT TO RIGHT
INCREASES THE COST OF BUILDING
THESE REPOSITORIES AND MANAGING
THE DATA. SO THE SPECIFICS OF
GENERAL REPOSITORIES ARE EASY TO
EWE BUT HAVE LIMITS AND
PARTICULARLY NEW INITIATIVES
BECAUSE FROM OFFICE OF DATA
SCIENCE, GI ECHO SYSTEM
INITIATIVE THEY ARE TRYING TO
BUILD A SYSTEM WHERE YOU CAN
SEARCH ACROSS SYSTEM THE
DIFFERENT REPOSITORIES LOOKING
FOR BACKGROUND OF A PARTICULAR
TYPE. SO WHERE ARE YOU GOING TO
FIND DIFFERENT REPOSITORIES ARE
THE (INAUDIBLE) MAYBE YOU CAN
JUST GO TO REPOSITORIES AND GO
TO ONE DISCOVERY REPOSITORIES.
THEN THEY GET TO BE ONE
PARTICULAR DATABASE. ON SINGLE
PROJECT OR DISEASE REPOSITORIES,
ALL THE DATA FOR SINGLE USE
TOGETHER ALIGN IN COMMUNITY
BUILDING. WHICH IS NIDCR,
BECAUSE DISEASE FOCUS OR
COMMUNITY FOCUS. EVENTUALLY
ECOSYSTEMS (INAUDIBLE) EACH OF
THE FAIR BENEFIT. SO ONE OF THE
IMPORTANT THINGS ABOUT
REPOSITORIES IS THE (INAUDIBLE)
IS THERE IS A GARBAGE IN GARBAGE
SO IF YOU DEPOSIT DATA WITHOUT
ANY METADATA FOR YOU IT IS GOING
TO NOT GET A LOT OUT OF IT SO
ESSENTIALLY IT IS IMPORTANT FOR
YOU TO SUBMIT ALL THE RICH METH
DATA USEFUL FOR YOUR COMMUNITY.
SO WE THINK A COMMUNITY --
WITHIN YOUR COMMUNITY THERE'S
STANDARDS AND PRACTICES AND YOU
WANT TO MAXIMIZE THAT. SO DATA
CENTERS HAVE BECOME EXTREMELY
IMPORTANT IN DATA SHARING,
PARTICULARLY IF YOU WANT TO SET
UP A BACKGROUND OR USE THE DATA.
SO ACCORDING TO MIRIAM WEBSTER
DICTIONARY, DATA STANDARD IS
SOMETHING THAT IS ESTABLISHED BY
AN AUTHORITY AS RULE OF MEASURE
OF QUANTITY WEIGHT EXTENT VALUE
OR QUALITY. THAT'S THE
DEFINITION OF THE DATA STANDARD.
THE OTHER PART IS REGULARLY AND
WIDELY USED. IT IS NOT
SUFFICIENT TO BE A DATA STAND
STANDARD. (INAUDIBLE) WHEN YOU
THINK ABOUT THAT STANDARD YOU
WANT TO KEEP IT IN MIND DATA
CENTERS. SO THE QUESTION IS WHY
DO YOU WANT IT? IS REGULATORY
REQUIREMENTS. PARTICULARLY WHEN
DOING CLINICAL TRIALS, WE ARE
ABLE TO SUBMIT YOUR TO FDA
REGULATIONS REQUIRED TO FOLLOW
DATA STANDARDS THAT'S HOW WE
ACCESS. SO REGULATORY STANDARDS
ARE IMPORTANT FOR PEOPLE TO LOOK
AT STANDARDS. FOR ME WHAT IS
IMPORTANT IS RESEARCH DEPOSITED
IN THE REPOSITORY FINDING THE
DATA WITH SIMILAR
CHARACTERISTICS OR OUTCOMES IS
EASIER IF YOU CAN DEFINE YOUR
OUTCOMES AND (INAUDIBLE)
STANDARDS. THAT IS WHAT ALLOWS
ME TO SEARCH FOR THE DATA.
AGAIN I WANT TO POOL THE DATA IN
LARGE DATA SETS, THEN AGAIN YOUR
STANDARDS ALLOW YOU TO SET UP
AND MINE THE DATA. AGAIN FOR AI
ML MACHINE LEARNING DATABASES
COME IN IMPORTANT AND MORE
IMPORTANTLY YOU HEARD THIS AT
THE NIH ECOSYSTEM WHERE THEY
TALK ABOUT BEING FINDABLE
ACCESSIBLE INTEROPERABLE,
REUSABLE, FAIR. ALL THESE DO NOT
HAVE THE DATA STANDARDS IT'S
HARD TO MEET REQUIREMENTS THAT
ARE SET FORTH BY NIH PER
ACCOUNT. SO WHEN YOU APPLY DATA
STANDARDS, START WITH CLINICAL
VARIABLE, CLINICAL RESEARCH
THAT'S ONE AREA. DEMOGRAPHICS
IS YOU WANT TO ESTABLISH
STANDARDS AND (INAUDIBLE)
ANATOMY IS A USEFUL ONE BECAUSE
THAT DATA ALREADY EXISTS SO
MATTER OF FINDING PLACES AND
BORROWING FROM THE DATA STANDARD
AND THAT WAY THEY DON'T EXIST
THEN WE CAN CREATE SOMETHI SOME.
DESCRIPTION OF EXPERIMENTS ASSAY
TYPES, DATA MODALITIES FOR
MEASURING GENOMIC DATA ARE ALL
STANDARDS THAT ALREADY EXIST SO
WE CAN APPLY AND MAKE SHARING
AND USING MEETING. BUT HOW DO
YOU GO ABOUT DOING IT, AT THE
VERY LEAST WE CAN COME UP WITH A
SET OF SHARED CONTROL LISTS
OFFER VOCABULARY, AND THAT'S
ANOTHER BASE LEVEL WHICH YOU CAN
START ADDRESSING THE
STANDARDIZATION IN THE DATA.
THEN YOU CAN TAKE ONE STEP UP IN
THE ONTOLOGY WHERE ESSENTIALLY
YOU ARE SORT OF COMPARING ADDING
VALUE TO IT AND EVENTUALLY NIH
EFFORT FOR COMMON DATA ELEMENTS
WHERE ESSENTIALLY TAKES THE
QUESTIONS AND EXPECTS A
RESPONSES THAT WE HAVE AND
AGAIN, TRYING TO MAP WHERE THE
STANDARDS TO THE MAP THE WAY YOU
DO STANDARD APPLIED TO THE DATA
LEVEL AND ESSENTIALLY THIS AGAIN
TRYING TO MAP THE WAY YOU DO THE
STANDARDS TO THE IQ PYRAMID SO
THE BOTTOM YOU CAN SEE THE
CONTROL VOCABULARY CAN BE
APPLIED IN THE DATA LEVEL AND
ONTOLOGY. DATA STANDARDS
ONTOLOGIES, MOST PEOPLE ARE
PROBABLY AVAILABLE, IT'S A SLIDE
THAT CAN BE SHARED WITH YOU. SO
COMMON DATA ELEMENTS ESSENTIALLY
STANDARDIZED PRECISELY DEFINED
QUESTION, THESE ARE USED AT NIH
AND WIDELY ENCOURAGED IN
CLINICAL CLINICAL DATA AND
CLINICAL DATA COLLECTION. -IS
IDEAL IF YOU WANT TO FOSTER
CREATION OF CONTROLLED
VOCABULARIES AND TERMINOLOGIES.
AND USE THESE RESPECTIVELY AND
RETROSPECTIVELY, EXPENSIVE TO
APPLY RETROSPECTIVELY. MAYBE YOU
WANT TO USE CVs TO STANDARDIZE
WHAT QUESTIONS WE HAVE AND THAT
WAY PEOPLE CAN USE FOR
RESPONDING. I WANT TO
ACKNOWLEDGE SOME PEOPLE WHO VAN
WANTING THESE PEEP -- BOUNCING
THESE IDEAS OFF OF THEM AND HOW
TO PRESENT HERE AND ISHWAR, AT
THE NIH ODSS. HERTZANO IN
UNIVERSITY OF MARYLAND. O WHEN
WHITE ALSO WORKING WITH
REPOSITORIES, MICHELLE GIGLIO.
WITH THAT, I WILL STOP HERE.
>>THANK YOU VERY MUCH, ANUP. SO
NOW WE WILL HEAR FROM DR. LU
WANG WHO WILL PRESENT VIRTUALLY
>>HELLO, EVERYONE, CAN YOU HEAR
ME?
>>YES, WE CAN, THANK YOU.
>>THANK YOU. LET ME DO THE
SLIDE SHOW. I WILL GET STARTED.
FIRST OF ALL I WOULD LIKE TO
THANK DR. TUCCI FOR GIVING ME
THE OPPORTUNITY TO PRESENT TO
Y'ALL SOME OF THE WORK THAT
NIDCR HAS BEEN DOING IN TRYING
TO ENABLE AND ACCELERATE DATA
INTENSIVE TRANSLATION RESEARCH.
I ALSO VERY MUCH LIKE TO THANK
(INAUDIBLE) TORR BEING A GREAT
COLLEAGUE TO BRAINSTORM WAYS TO
BRING THE FIELD FORWARD IN DATA
INTENSIVE RESEARCH. AND A NUMBER
OF NIDCD COLLEAGUES BECKY AND WU
WHO HAVE BEEN HELPING PREPARE
FOR MY PRESENTATION. I SINCERELY
APOLOGIZE FOR NOT BEING ABLE TO
JOIN YOU IN PERSON. DUE TO
UNEXPECTED CONDITION LAST
MINUTE. GOOD AFTERNOON,
EVERYONE, SO I WILL GET STARTED.
MY TALK WILL COVER TWO RELATED
TOPICS, ONE HAS TO DO WITH NIDCR
WORK, THE DATA SCIENCE WORKING
GROUP WHICH IS A WORKING GROUP
NIDCR COUNCIL. THE OTHER IS
ABOUT HOW NIDCR HAS BEEN
FACILITATING AND DRIVING THE
EVOLUTION OF OUR FLAGSHIP DATA
REPOSITORY AS MENTIONED FAITH
BASED FOR PURPOSE OF ENABLING
TRANSLATIONAL RESEARCH. GIVE ME
ONE MINUTE TO ADJUST THE SCREEN
SO NIDCD NIDCR IS ALSO MISSION
ORIENTED INSTITUTE. OUR MISSION
IS TO ADVANCE THE FUNDAMENTAL
KNOWLEDGE ABOUT DENTAL, ORAL AND
CRANIOFACIAL HEALTH AND DISEASE
AND TRANSLATE INTO PREVENTION,
EARLY DECK AND TREATMENT
STRATEGIES THAT IMPROVE OVERALL
HEALTH FOR ALL INDIVIDUALS AND
COMMUNITIES ACROSS THE LIFE SP
SPAN. SO THE INSTITUTES CURRENT
STRATEGIC PLAN ESTABLISHED UNDER
THE LEADERSHIP OF OUR DIRECTOR,
DR. RENA DSOUZA AND DR. JENNIFER
WEBSTER CYRIAQUE PROVIDES FIVE
KEY AREAS TO INTEGRA ORAL AND
GENERAL HEALTH TO DEVELOP
PRECISION DENTAL MEDICINE TO
ACCELERATE THE TRANSLATION OF
RESEARCH AND IMPLEMENTATION OF
NEW DISCOVERIES INTO HEALTHCARE
PRACTICES AND REDUCE HEALTH
DISPARITIES AND EQUALITIES, TO
STRENGTHEN AND DIVERSIFY
RESEARCH PIPELINE TO EXPAND
PARTNERSHIPS TO IMPROVE
INSTITUTES REACH AND IMPACT, ALL
CALLING FOR ACCELERATED DATA
SCIENCE EFFORTS. THE DATA
SCIENCE PRIORITY IS NOT
RECOGNIZED BY ACCIDENT, IT
REALLY REFLECT OUR INSTITUTES
APPRECIATION THAT EXPONENTIAL
GROWTH OF DATA IN SCALE,
DIVERSITY, RESOLUTION AND
DIMENSION AND THE ADVANCES OF
DATA ANALYTICS AND DECREASES OF
DAYTIME DATA ANALYSIS TESTS ARE
MAKING IT PHYSICAL NOW TO STUDY
BIOLOGICAL SYSTEMS AND SOCIETAL
CHALLENGES AT A DEPTH PREVIOUSLY
UNIMAGINABLE OR UNATTAINABLE. SO
THAT REALLY GIVES US HOPE FOR
CONTINUING RESEARCH. SO WITH
THAT, APPRECIATION THE DATA
SCIENCE STRATEGY WORKING GROUP
WAS COMING LAST SEPTEMBER, AGAIN
SO THIS IS A WORKING GROUP OF
THE COUNCIL. THE WORKING GROUP
WAS CONVENED TO MAKE STRATEGIC
RECOMMENDATIONS ON
IMPLEMENTATION OF THE DATA
SCIENCE PRIORITY. WE HAVE 12
OUTSTANDING WORKING GROUP
MEMBERS FROM ACADEMIA,
NON-PROFIT AND INDUSTRY. WHO
JOINED ME IN MULTI-OMICS DATA
SHARING PLATFORMS INFO MA TICKS,
DATA TIME MODELING AND
SIMULATION COMPUTATIONAL
ENGINEERING, MACHINE LEARNING,
ET CETERA. WHICH THEY APPLY TO
BIOMEDICAL AND BEHAVIORAL
RESEARCH AS WELL AS PRODUCT
DEVELOPMENT IN NIDCR MISSION
AREAS. DR. AXEL VISEL AND AMY
SLEP ARE WORKING MEMBERS IN THIS
WORKING GROUP AND DR. VISEL IS
THE WORKING GROUP CHAIR AND DR.
(INAUDIBLE) IS HIS CO-CHAIR.
THIS WORKING GROUP MORE
SPECIFICALLY IS CHARGED WITH
PROVIDING RECOMMENDATIONS FOR
WELL INFORMED AND WELL REASONED
DATA SCIENCE STRATEGY TO ENABLE
TO REALIZE POTENTIAL OF DATA
SCIENCE IN THE ADVANCING THE
FULL TRANSLATIONAL SPECTRUM OF
DENTAL ORAL AND CRANIOFACIAL
RESEARCH REDUCING HEALTH
DISPARITIES AND INEQUALITIES AND
IMPROVING ORAL HEALTH. OVERALL
HEALTH. GIVEN THAT SCOPE OUR
MEMBERSHIP SELECTION AND
IMPLEMENTATIONS TARGETED EXPERTS
WHOSE RESEARCH FOCI ALIGN WITH
POOR TRANSLATIONAL CONTINUUM
HAVING BASIC DISCOVERY RESEARCH
AND TRANSLATION OF DISCOVERIES
TO INDIVIDUAL HUMANS AND
PATIENTS TO CLINICAL PRACTICE
AND ULTIMATELY THE HOUSE OF THE
PUBLIC OR THEY ARE REFERRED TO
AS T TO 4 (INAUDIBLE) AS SHOWN
HERE EACH TEAM LEVEL IS
REPRESENTED BY FIVE OR MORE
EXPERTS OF THE WORKING GROUP.
AND N -- SO ALL THE EX-OFFICIO
MEMBERS FROM NIDCR THAT WERE
WORKING GROUP CLOSELY, DR. KING,
DIRECTOR OF THE DIVISION OF
DIRECTOR OF DIVISION OF
EXTRAMURAL UNTILES SERVING AS
COUNCIL EXECUTIVE SECRETARY IS
ONE OF US THEN FOUR PROGRAM
STAFF MEMBERSES WHO JOINED
JOINTLY OVERSEE INITIATIVES AND
ACTIVITIES IN DATA SCIENCE AND
IMPLEMENTATION OF THE 2023 NIH
DATA MANAGEMENT AND SHARING
POLICY. AND OUR HEALTH
DISPARITIES AND INEQUALITIES
PROGRAM AN GENOMICS. AS WELL AS
OUR TECHNOLOGY OFFICER WHO
PLACED A KEY ROLE IN ADOPTION
INFORMATION TECHNOLOGY FOR
INSTITUTE, WITH WORKING IN THE
GROUP IN THE PAST 12 MONTHS OR
SO AND IT'S BEEN A SUPER
PRODUCTIVE PERIOD. HERE IS A
BRIEF UPDATE. THE WORKING -- IT
IS AMAZING THAT OUR WORKING
MEMBERS HAVE BEEN PUTTING SO
MUCH EFFORTS SO THERE HAVE BEEN
(INAUDIBLE) THE SUB WORKING WITH
GROUP TASKED TO COMPLETE A
DEFINED SHORT PERIOD ALSO MEET
WHENEVER POSSIBLE AND
RECOGNIZING THE DATA NEEDS FOR
RESEARCH, THE WORKING GROUP
INITIALLY FOCUSED ON ASSESSING
DENTAL ORAL AND CRANIOFACIAL
DATA AVAILABILITY WHICH REVEALED
ALMOST AS ANTICIPATED MAJOR
COMPLEXITY AND A NEED TO GET
MORE INFORMATION FROM OUR
CONSTITUENCIES DATA GENERATORS.
AND SOME ARE DATA CONTRIBUTORS
IN OUR DATA USERS. AS SUCH A
REQUEST FOR INFORMATION OR IFI
WAS PUBLISHED BY NIDCR.
QUESTIONS WERE ASKED IN THREE
AREAS. THE FIRST IS ABOUT DATA
TRANSFORMATION STORAGE,
PRESERVATION AND SHARING
PROCESSES. THE SECOND IS ABOUT
DATA TYPES BEING COLLECTED AND
RESEARCH CORE FACILITIES AND
INDEPENDENT LABORATORIES AND
HOSPITAL RESEARCH CENTERS AND
THE LAST AREA HAS TO DO WITH
STANDARDS FOR SCIENTIFIC DATA
AND INCLUDING METADATA THAT
ENABLE THE REUSE OF THE SHARED
DATA TO ENHANCE RESEARCH IN
CLINICAL CARE. IFI IS EXPIRED
LATER IN THE MONTH, THE
RESPONSES RECEIVE WILL BE
ANALYZED BY STAFF TO FORM
WORKING GROUPS RECOMMENDATION.
ASIDE FROM IFI HAVE WORKING
GROUP NIDCR MOSTED TWO 90 MINUTE
LISTENING SESSIONS IN JULY. EACH
WITH A DOZEN OR SO MORE INVITED
COMMUNITY PARTICIPANTS.
QUESTIONS ASKED OF THE
PARTICIPANTS WERE SIMILAR TO
THOSE IN RFI, BOTH SESSIONS WERE
VERY REAL ATTENDED AND THE
CHALLENGES AND OPPORTUNITIES AND
DATA AVAILABILITY DATE
REPOSITORIES STANDARDS AND USE
TOOLS THAT REVEAL SESSIONS
HIGHLY INFORMATIVE. IN FACT
WHILE THE LATEST PROGRESS UPDATE
YESTERDAY'S NIDCR COUNCIL
ROUTINE, THE WORKING GROUP
CHAIR, DR. VISEL PRESENTED THE
TAKE HOME MESSAGES FROM THE
LISTENING SESSIONS. SO THE NEXT
STEPS FOR THE WORKING GROUP
BRAINSTORMING AND WRITING UP AND
RECOMMENDING STRATEGIC
DIRECTIONS THE NEXT JANUARY
MEETING FOR NIDCR CONSIDERATION
AND ALSO MORE BROAD PUBLIC
DISSEMINATION OF THEIR
RECOMMENDATIONSS. SO WHILE
WORKING GROUP RECOMMENDATION IS
PENDING NIDCR FUNDING PROGRAM
DATA SCIENCE COMPUTATIONAL
BIOLOGY AN BIOINFORMATICS
CONTINUES TO EVOLVE QUICKLY.
THIS IS FIVE-YEAR-OLD PROGRAM
THAT HAS STARTED TO AFTER
JOINING NIDCR, THE PROGRAM IS
NOW OVERSEEN BY DR. OKI
VOLUNTEER PHYSICIAN BY TRAINING.
A TALENT VERY CRUCIAL FOR THE
INSTITUTE TO GROW DATA SCIENCE.
I MUST SAY I'M VERY PROUD THAT I
WAS ABLE TO RECRUIT DR. OKI FOR
MY INSTITUTE, WE ALL FACE THE
CHALLENGE TALENTS AND DATA
SCIENCE HARD TO FIND RECRUIT AND
RETAIN SO THE DATA SCIENCE
PROGRAM INTERSECTS ALL OTHER
FUNDING PROGRAMS AT NIDCR THAT
IS AIMED TO FACILITATE DIVERSE
FACIAL ORRILL CRANIOFACIAL
RESEARCH ACROSS THE
TRANSLATIONAL SPECTRUM BY
PROMOTING DATA DIVERSITY
AVAILABILITY AND REUSABILITY. BY
SUPPORTING DATA REPOSITORIES AND
DATA USE TOOLS AND BY NURTURING
DIVERSE INVESTIGATORS IN ORAL
HEALTH PROFESSIONALS. TODAY THE
PORTFOLIO USES A VARIETY OF
FUNDING PROGRAMS TO SUPPORT
PROJECTS, DATA REPOSITORIES,
STANDARDS, TOOLS FOR DATA
SHARING, CLINICAL APPLICATIONS,
AND AS WELL AS DATA SCIENCE
ETHICS. ALSO LIKE TO MENTION
FIRST AREA THAT WE SUPPORT THAT
IS THE DEVELOPMENT OF IMAGE AND
AI BASE MODAL DEVICES FOR EARLY
SCREENING OF CRANIO
MALFORMATIONS AT CARE AND
DIGITAL PATHOLOGY BUT WE DO HAVE
SBIR SUPPORTED PROJECTS PROVIDED
PRODUCTS THAT WERE ALREADY
INDUCED DURING THE PANDEMIC
PERIOD. NOW I WOULD LIKE TO
SWITCH GEARS TO THE SECOND PART,
I WILL TRY TO FIRST TO SAY NOT
WAYING MY TIME. OPT DATABASE
FROM NIDCR INITIATED PHYSICS
PROGRAM IN 2009, SUPPORTED
MULTIPLE RESEARCH PROJECTS ALSO
KNOWN AS SPOKES AND DATA HUB TO
PUBLICLY SHARE DATA DEVELOPMENT,
THE PROGRAM WE USED IN 2014
SUPPORTING NEW SPOKES AND NEW
DATA HUB. THE HUB WAS RENEWED IN
2019. THAT WAS WHEN THE PROGRAM
TRANSITION TO A HUB ONLY MODEL
WHEN I BECAME DIRECTOR OF THE
FAITH BASED PROGRAM. IT HAS
BUSINESSES HAS BEEN LARGE WILY
RECRUITING SCIENTIFIC DATA FROM
NIDCR INVESTIGATORS AND
GRANTEES. SINCE 2019 AND
PUBLICLY SHARE THE DATA. OVER
TIME THE DATA COVERAGE OF
DEVELOPMENTAL STAGES ANATOMICAL
SITES DISORDERS, BIOLOGICAL
LEVELS AND MODEL ORGANISMS HAVE
LARGELY EXPANDED IN THE OFFERING
OF EXPERIMENTAL DATA OUTPUTS
GENERATED OUTING CUTTING EDGE
TECHNOLOGY PLATFORMS HAS
CONTINUED TO INCREASE. THE TOOLS
THAT SERVE THE DATA CONTRIBUTORS
AND USERS HAVE KEPT IMPROVING
AND EXPANDING INCLUDING FOR
EXAMPLE SELF-CURATION OF DATA BY
CONTRIBUTORS CAPABILITY TO MAKE
THE SHARED DATA AI MACHINE
LEARNING AND DEEP LEARNING READY
AND COMPLIANCE TO THE FAIR AND
TRUST PRINCIPLES AND IMPORTANTLY
DATA ARE TREATED AS CITE HAD
BEEN EPIDEMIC WITH ARCHIVE
DIGITAL IDENTIFIERS AND EARLIER
THIS YEAR THE REPOSITORY
SUCCESSFULLY MIGHT REACH THE
CLOUD. IT IS ALSO WORSE NOTING
THAT SOME OF THESE PICTURES --
FEATURES THAT ARE DESIRABLE HAVE
RESULTED FROM MULTIPLE FAITH
BASED PROJECTS, SUPPLEMENTED BY
NIH DATA SCIENCE STRATEGY. IN
THE PAST THREE YEARS. SO TODAY
FAITH BASED IS THE CENTRAL
REPOSITORY OF DENTAL ORAL AND
CRANIOFACIAL DATA SETS GENERATED
USING A VARIETY OF MOLECULAR
CELLULAR GENOMIC AND IMAGING
TECHNOLOGIES DISRUPTED
DEVELOPMENT IN MULTIPLE MODEL
ORGANISMS AND MULTIPLE
DIMENSIONS THE REPOSITORY OFFERS
THROUGHOUT MENTAL (INAUDIBLE)
GROWING COLLECTION OF HUMAN
FACIAL IMAGES AND BOTH
ACCOMPANIED WITH SEQUENCE
INFORMATION AND HAVE OPPORTUNITY
DIAGNOSTICS. AMONG STANDARDS
THAT FAITH BASED USES ONTOLOGY
OF CRANIOFACIAL DEVELOPMENT AND
MALFORMATION WHICH IS SUPPORTED
DURING THE INITIAL FUNDING
PERIOD. AND MOTH DATA ARE
AVAILABLE PUBLICLY VIA OPEN
ACCESS. IDENTIFIABLE OR
POTENTIALLY IDENTIFIABLE HUMAN
DERIVED DATA ARE PUBLICLY
AVAILABLE SO CONTROL ACCESS FOR
THE PURPOSE OF ENSURING
APPROPRIATE DATA SHARING AND
REUSE AND I CO-CHAIR THAT NIDCR
DATA ACCESS COMING TO THAT
REALLY IS THE BODY THAT RAN
APPROPRIATE DATA ACCESS
REQUESTS. AND I ALSO WANT TO
MENTION THAT ANNUAL MEETING
FORMS ARE ORGANIZED BY THE PHASE
SPACE IS INCREASINGLY -- FACE
BASE IS INCREASINGLY FOCUSED
COMMUNITY OUTREACH TO NETWORK OF
DATA CONTRIBUTORS AND DATA USERS
ACROSS THE TRANSLATIONAL
CONTINUUM. THE NEWLY INITIATED
OFFICE HOURS ARE VERY POPULAR
FOR INVESTIGATORS WHO ARE
INTERESTED IN USING FACE BASE AS
REPOSITORY TO -- FOR THEM TO
MEET THE NIH DATA MANAGEMENT AND
SHARING POLICY REQUIREMENT AND
ALSO FOR DATA USERS. SO QUICKLY
I WILL MENTION I WILL SHARE
INFORMATION SOME DATA IN THE
FACE BASE THAT MAYBE OF INTEREST
SINCE TALKING TO OUR NIDCD
COLLEAGUES AND EXPERTS. SO WE
HAVE CRANIO SYNSTOSIS DATA THAT
INCLUDES GENOTYPE GENE
EXPRESSION AND MORE FOE METRIC
ANALYSIS ET CETERA. THERE IS
ALSO ORAL FACIAL FACE BASE
MULTIPLE DATA TYPES, AND WHAT IS
NOT SHOWN HERE IS A DATA SET IN
THE PROCESS OF BEING UPLOADED
AND SHARED FROM MULTI-CENTER
OBSERVATORY STUDY HELP FACIAL
MICROSONIA. AND WE ARE ALSO
NOTICE CUSHION ABOUT UPLOADING
AND SHARING SOME SPEECH THERAPY
PROJECTS FUNDED BY NIDCR AND
PERHAPS OTHER NIH INSTITUTES IN
A COUPLE OF MONTHS AGO AN
INVESTIGATOR STARTING HEARING
LOSS AT USC AND THE FACE BASE
TEAM THERE STARTED TO EXPLORE IF
THEY CAN HANDLE AUDIO GRAM DATA
WHICH WOULD MAKE THE 40TH DATA
OUTPUT TYPE THAT FACE BASE
ACCOMMODATES. AS OF THIS THE
ANSWER IS YES AS SHOWN IN THIS
AND THE NEXT SLIDES. THE SLIDES
ARE PROVIDED BY THE FACE BASE
TEAM AT USC. I DO APOLOGIZE FOR
THE SMALLER FONT. ESSENTIALLY
THE FACE BASE TEAM WOULD LIKE TO
DELIVER TO THIS AUDIENCE IS THE
DATABASE IS NOW IN FACE BASE
THAT INCLUDES PROAPOLOGETIC
DESCRIPTION, CLINICAL ASSAY
RESPONSE TO IDENTIFY HUMAN
FORMATION AND PROJECT
INFORMATION DEMOGRAPHICS AND
ASSAY DETAILS. RAW AUDIO GRAM
DATA INCLUDES THE AUDIO GRAM
FILE GENERATED FROM THE
EVALUATION VISIT AND ADDITIONAL
ASSOCIATED METADATA. THE PROCESS
AUDIO GRAM DATA ARE PRODUCED BY
TOOLS THAT EXTRACT FEATURES FROM
THE ROUTINE RECORD AND GENERATE
STRUCTURED DATA OF THE MEASURES
AND EVEN SOME VISUALIZATION
PLOTS. HERE YOU CAN SEE THE
ROLE OF DATA AND THE PROCESS
PLOTS. THE FACE BASE TEAM ARE
VERY HAPPY TO TALK WITH ANY
INTERESTED GROUPS FROM THE
INSTITUTE AND YOUR GRANTEE AND
YOUR INTRAMURAL GROUPS TO
FURTHER EXPLAIN HOW THEY COULD
BE OF ASSISTANCE FOR YOU TO USE
FACE BASE POSSIBLY AS REPOSITORY
TO MEET THE DMS REQUIREMENT.
THIS IS A SLIDE --
>>DR. WONG, DO YOU MIND IF
MAYBE WE CAN MOVE TO SOME
DISCUSSION? THIS IS REALLY
INTERESTING, I WANT TO MAKE SURE
THAT WE DO HAVE SOME TIME TO
DISCUSS WHAT YOU HAVE BEEN
TALKING ABOUT IN THE CONTEXT OF
NIDCD. I THINK ESPECIALLY THE
AUDIO METRIC DATA YOU JUST
PRESENTED IS REALLY A GREAT
INTEREST TO US. I WOULD LIKE TO
BE ABLE TO PUT IT IN SOME TEXT
GRADGRADGRADE.
>>SURE. HAPPY TO SHARE THESE
SLIDES, PARTICULARLY THIS ONE
INTERESTED IN TAKING A LOOK. I'M
AVAILABLE FOR QUESTIONS. DR.
THIBEAULT, WHICH ARE GOING SO TO
HAVE SOME DISCUSSION AND WE HAVE
THE DISCUSSION SLIDES. DID WE
BRING THESE UP, TO SAVE TIME CAN
I START?
>>I'M SITTING HERE LISTENING TO
BOTH TALKS, LISA AND I ARE
OVERWHELMING, NIDCD START WITH
STRATEGY. AND DO YOU START BY
PARTICULARLY BECAUSE THERE'S SO
MANY AREAS, SO MANY DISEASES.S.O
MANY TYPES OF DATA AND THE VAST
MAJORITY OF WHAT IS BEING SHOWN
IS GENETIC DATA. BUT VERY LITTLE
BEHAVIORAL DATA IS SHOWN. HOW
DOES THE NIDCD START THEIR
STRATEGY? DO THEY PICK AN AREA
AND FOCUS ON DESIGNING WHAT
DATABASE THAT SHOULD BE AND
LOOKING AND WHO DECIDES WHAT
DATA GOES IN OR WHAT THE
STANDARDS ARE, ALREADY DO YOU DO
IT BROADER OR DO YOU TRY TO JOIN
ONE OF THE LARGER -- OBVIOUSLY
DO IT THAT WAY, AND START WITH
MORE ECOSYSTEM DATA PROCESS. THE
QUESTIONS ARE HUGE. SHOCKINGLY
OVERWHELMING AND DO YOU TAG ON
TO WHAT IS BEING PUT INTO
DATABASES, LIKE ALL MY GENETIC
DATA GOES INTO NCIB IMMEDIATELY.
IS THERE A IMMEDIATE TO HAVE
COPY OF THAT AT NIDCD AND IN
THEIR DATABASES? I DON'T THINK
SO PERSONALLY. I WONDER WHAT
OTHER PEOPLE THINK. AND THOUGHT.
>>THAT'S CERTAINLY THE QUESTION
OF WHETHER WE CAN LEVERAGE
EXISTING DATABASES AND SUPPORT
EXTRAMURAL SPACE LIKE WE DO
GRANTS OR WHETHER THERE'S A NEED
FOR SOMETHING MORE THAN WHAT IS
AVAILABLE ALREADY.
>>ANYONE HAVE ANY THOUGHTS OR
SUGGESTIONS? OR OVERWHELMING,
I'M CURIOUS WHAT PEOPLE ARE
DOING AND RELYING ON OPEN
SCIENCE FRAMEWORK I HAVE
BEHAVIORAL DATA AND ALSO OPEN
SCIENCE PRELIMINARY PIECE YOU
PUT IN YOUR EXPERIMENTAL PLANS
AND YOUR QUESTIONS AND PUT YOUR
DATA I'M CURIOUS OTHER PEOPLE
ARE DOING TO DATE, ONE WAY OF
THINKING ABOUT HOW TO BEGIN THIS
PROCESS.
>>DR. TUCCI --
>>YES.
>>DR. TUCCI, THIS IS LU WANG, I
CAN'T FIND THE RAISE HAND
FUNCTION. MAY I SHARE SOME
THOUGHT?
>>YES, PLEASE DO.
>>THANK YOU. OPEN SCIENCE
FRAMEWORK IS POTENTIAL PLACE
THAT COULD BE USED IN MY VIEW. I
THINK IN TERMS OF THE DATA
QUALITY AND APPROPRIATE SHARING
OF IDENTIFIABLE DATA MORE HAS TO
BE LEARNED IN REVIEWING THE DATA
MANAGEMENT AND SHARING POLICY
PLANT OUR GRANTEES HAVE
SUBMITTED QUESTIONS ABOUT
EFFECTIVE AND SECURE DATA
SHARING HAVE BEEN RAISED. WE ARE
LEARNING FROM GRANTEES IN TERMS
OF HOW THAT CAN BE USED. IN
TERMS OF FACE BASE, WHAT I WOULD
LIKE TO SHARE IS THAT FACE BASE
IS -- DOES UPLOAD AND SHARE
BEHAVIORAL RESEARCH DATA. WE ARE
NEW IN THIS ARENA BUT IT'S BEEN
DONE RECENTLY. THERE ARE OVER 40
DATA TYPES BUT AGNOSTIC DATA
MODEL ALLOWS A HYBRID DATA
REPOSITORY SUCH LIKE FACE BASE
TO FILL IN GAP BETWEEN THE
GENERALIST AND THE SPECIALIST
REPOSITORIES TO ACCOMMODATE THE
NEEDS FOR A VARIETY OF DATA
TYPES SHARING. THANK YOU.
>>GREAT. THANK YOU.
>>CAN I THROW A FEW SLIDES
TOGETHER TO GET A DISCUSSION
GOING AND WAS SHARING THEM HERE.
GO TO NEXT SLIDE PLEASE.
>>THIS SORT OF GETS TO OTHER
THINGS YOU WERE BRINGING UP THE
CHALLENGES AND HOW TO LEARNING.
SO THE QUESTION TO ADVISORY
COUNCIL IS FIRST HOW DO YOU
SOLICIT INPUT FROM THE COMMUNITY
ON DATA SHARING AND STANDARDS?
THAT IS ONE BIG OPEN QUESTION
HOW WE ADDRESS THAT IS CONFIDENT
DELIVERY?
>>ONE OF THE I THINK QUESTIONS
IS DOES NIDCD NEED A WORKING
GROUP OR DOES IT NEED TO
ESTABLISH STANDARDS. I THINK ONE
OF THE OTHER CHALLENGES OR
QUESTIONS YOU MENTIONED OR AT
LEAST ON ONE OF YOUR SLIDES
BECAUSE PREVIOUS, SHOULD THERE
BE GRANTS TO ESTABLISH STANDARD
OR WHO ESTABLISHES OR WORKING
GROUP AND HOW -- WHO IS ON THOSE
AND HOW DOES THAT ESTABLISHED?
THERE IS A LOT OF THINGS TO
CONSIDER FOR EVERY RESOURCE
STUDY. EVERY FACTOR. AND
MISSION AREAS WHICH TO DO IT SO
KELLEY KING WILL TALK ABOUT AN
EFFORT TO DEVELOP DATA STANDARDS
FOR HEARING RESEARCH. AND I
THINK A POINT STANDARDS ARE
ABSOLUTELY NECESSARY, BECAUSE
WITHOUT THAT, YOU CAN -- YOU
DON'T HAVE INTEROPERABILITY OF
DATA. SHARE IS NOT GREAT BENEFIT
IF EVERYONE IS REPORTING
DIFFERENT OUTCOME MEASURES. WE
FEEL STRONGLY ABOUT THAT. JUST
RECEIVING THROUGH THE QUESTIONS
WILL BE FOCUSED ON ONE
MISSIONARY AT FIRST. THEN ROLL
OUT EFFORTS IN OTHER MISSION
AREAS AND HOW DO WE START. I
THINK REGARDING THE DATA
STANDARDS WE WILL HEAR MORE
ABOUT THAT EFFORT, I THINK WE
WILL HAVE -- I KNOW WE ARE
RUNNING ON TIME, I MEAN OVER
TIME AND WILL HAVE 15 MINUTES
NOW FOR DISCUSSION AND THEN HEAR
FROM KELLEY BEFORE WE MOVE ON
FROM THIS TOPIC. DO YOU WANT TO
FRAME ANOTHER QUESTION PAST DATA
STANDARDS?
>>YES, QUESTION IS WHERE DO WE
START DATA STANDARDS IS ONE AND
THEN THE NEXT ONE IS
REPOSITORIES SO THERE ARE TWO
TRAINS OF THOUGHT. ONE IS
EVERYBODY STARTING JANUARY
SUBMITTING THE BMS PLAN SO
EVERYBODY IDENTIFY WHAT
REPOSITORIES WILL BE USED TO
DEPOSIT DATA, CREATE A SURVEY
FROM THAT AND SEE WHAT WILL THE
COMMUNITY IS DOING AND
CORRELATES AROUND THAT OR WE CAN
BE MORE CO-ACTIVE AND HAVE
WORKING GROUP GOES AND LOOKS AT
REPOSITORIES AND IDENTIFIES THE
FEATURES AND COMES UP WITH
RECOMMENDATIONS, THAT WILL BE
AND THAT'S TWO APPROACHES TO IT.
>>CAN I BE DEVIL'S ADVOCATE? IF
E WE ARE REQUIRED TO PUT OUR
DATA IN DATA REPOSITORIES
ELSEWHERE, WHICH WE ALL WHERE
ARE, NO OVERSIGHT TO ENSURE WE
ARE DOING THAT, SURE WILL THERE
WILL BE AT SOME POINT, WHY NEED
A SECOND REPOSITORY OR DATABASE
OR WHOLE OTHER -- PLEASE. YOU
CAN TALK.
>>I'M NOT A DATA SCIENTIST. L
SO I WILL SAY THIS AS A COMPLETE
IGNORANCE PERHAPS I THINK
THERE'S DIFFERENT REPOSITORIES
AND PART OF THE -- A LOT OF
THESE REPOSITORIES IS FORMATTING
IS A HUGE THING. SO THEY DON'T
SMOOTHLY SEAMLESSLY TALK TO EACH
OTHER AND WHAT DATA GO IN
ESPECIALLY HOW THEY GO IN, IS
COMPLETELY A VARIABLE THAT
INVESTIGATORS TO INVESTIGATOR.
SO I WOULD SAY THAT CENTRALIZING
THIS EARNING WOULD BE VERY
BENEFICIAL BECAUSE THE INSTITUTE
SORT OF HAS EMERGENT KNOWLEDGE
THAT EACH INDIVIDUAL
INVESTIGATORS CAN HAVE. SO I
WOULD FOR ANY KIND OF DATA THAT
I WAS LOOKING TO DEPOSIT AND
SHARE WITH PEOPLE, IT WOULD HELP
IF SOMEBODY HAS DONE THAT PART
OF THE THINKING THAT IS NOT MY
FOR DAY I CAN GENERATE TODAY.
>>REUSABILITY DATA IS ENABLED
BY HAVING THE DATA STANDARDS
THAT MAKE THEM INTEROPERABLE AND
HAVING THE ABILITY TO LOOK AT
LARGER DATA SETS AND FROM ONE OR
TWO STUDIES.
>>CAN YOU SAY A WORD ABOUT HIGH
VALUE DATA SETS HOW YOU DEFINE
THOSE AND WHAT THE UTILITY MIGHT
BE FOR PRECISION MEDICINE?
>>I HAD SOMEBODY -- (INAUDIBLE)
>>I LOVE THE FLEXIBLE INITIAL
APPROACH BCB HAS TAKEN AND THERE
IS LOT OF WORK BY DCD FUNDED
PROJECTS FOR CHILD DATA, LIKE
AUDIO AND VIDEO DATA, A LOT OF
PEOPLE HAVE WORKED ONE ON ONE
WITH PEOPLE SO I THINK KEEPING
-- WE ARE SO DIVERSE IN WHAT WE
DO KEEPING SOME FLEXIBILITY AND
THERE IS A LOT OUT THERE PEOPLE
HAVE BEEN REALLY WORKING IN THIS
PROBLEM SPACE. JUST PUT THAT OUT
THERE.
>>DR. TUCCI'S COMMENT HIGH
VALUE DATA SETS. SO SOME
INSTITUTES HAVE TAKEN APPROACH
OF CREATING HIGH VALUE DATA SETS
AND THINK ABOUT IT FOR INSTANCE
(INAUDIBLE) IS AN EXAMPLE,
PEOPLE NOT FAMILIAR, IT IS A
PROJECT WHERE TAKING DIFFERENT
TISSUES FROM CADAVERS AND THESE
ARE MORE THAN ACCIDENT SO MOSTLY
HEALTHY INDIVIDUALS SO THERE IS
A GENE EXPRESSION DATA SET
AVAILABLE FOR ANYBODY TO QUERY,
SO PARTICULAR TISSUE HOW IS GENE
EXPRESSED IN NORMAL INDIVIDUAL
YOU CAN (INAUDIBLE) THAT. SO
HIGH VALUE DATA SET YOU CAN LOOK
AT HOW MANY PEOPLE IS THE
WEBSITE TODAY ASTRONOMICAL
(INAUDIBLE) ALL HIGH VALUE DATA
SET THAT WAS FUNDED AND THAT
ALLOWS TRANSFORM GENOMICS FIELD
SO THE QUESTION IS IS NIDCD
BENEFIT FROM IDENTIFYING COUPLE
OF KEY AREAS CREATING THIS HIGH
VALUE DATA SET PERSPECTIVELY
WITH CONTROL CONDITIONS WILL
SERVE AS A MAGNET FOR THE
COMMUNITY TO COME INTO RESEARCH
I THINK THAT'S ONE OF THE IDEAS.
>>MORE A QUESTION THAN AN
ANSWER. IN THINKING THROUGH THE
WHERE SHOULD WE START FIRST.
FOCUSING ON DATA STANDARDS. ONE
OF THE REASONS THAT I AM IS IT
SEEMS LIKE A DIFFICULT PROBLEM
TO SOLVE IF THERE ARE MANY WAYS
TO REQUIRE DATA, TAKE VIDEO
DATA. TAKE MICROPHONES, BILLIONS
OF SAMPLING RATES. THE DATA
STANDARDS PROBLEM SEEMS TO ME
WOULD BE A PROBLEM OF READ OUT.
I DEPOSIT MY RAW DATA AND YOU
DEPOSIT YOURS, WE ALL NEED
DIFFERENT RAW TYPES OF DATA. WE
NEED A WAY TO READ THAT. INSTEAD
OF STANDARDIZING DATA WHICH WILL
NEVER HAPPEN IS YOU WANT PEOPLE
WHO WORK IN THIS AREA TO WORK ON
WAYS OF READING MANY, MANY
DIFFERENT TYPES OF DATA. SIMPLE
EXAMPLE WOULD BE THERE ARE
SAMPLING RATES FOR MICROPHONE
BUT I DON'T WANT TO PLOT THE
SPECTRUM AND THERE COULD BE
RELATIVELY STRAIGHT FORWARD
INTERFACE, I KNOW SAMPLING RATE,
I WILL BE ABLE TO INTERPOE LATE
OR WHATEVER AND TURN INTO THE
SPECTRUM FOR YOU. SIMPLE EXAMPLE
SO THAT'S HOW I THINK ABOUT THE
DATA STANDARDS AN READ OUT. I
THINK WE ARE GOING TO SPEND TOO
MUCH TIME TRYING TO STANDARDIZE
DATA IN AN ENVIRONMENT WHERE
TECHNOLOGY MOVES QUICKLY AND
THERE WILL CONTINUE TO BE VERY
MANY DIFFERENT STANDARDS H.
>>I ASK THAT IS SOMETIMES YOU
WANT THAT DIVERSITY IN THE DATA,
PARTICULARLY WITH MICROPHONES,
YOU DON'T WANT DEEP LEARNING
ALGORITHM, PICKING UP ONLY BEING
ABLE TO HANDLE DATA FROM
PARTICULAR CHANNEL. YOU WANT
MANY DIFFERENT CHANNELS SO IT
DOESN'T TUNE IN ON THE FEATURES
YOU WANT TO GET AT. SO YOU WANT
THAT DIVERSITY AND IN TERMS OF
SAMPLING RATES YOU CAN ALWAYS
SAMPLE ENOUGH SAMPLES THOUGH
PROBABLY BOUND WANT STANDARD
THAT NO ONE GOES TO LOOK AT NO
ONE IS LOOKING AT 8,000 SAMPLE
SPEED ANY MORE. YOU WANT TO MAKE
SURE IT'S HIGH ENOUGH BUT ALWAYS
SELL YOURSELF IF YOU NEED IT. TO
GO A LOWER RATE BUT DIVERSITY IS
REALLY KEY ESPECIALLY WITH THE
DEEP LEARNING ALGORITHMS.
>>ONE THING WHEN THERE'S TWO
KINDS OF DATA STANDARDS, ONE IS
DATA STANDARD AN COLLECTION BUT
OTHER IS ALSO HOW YOU DESCRIBE
THE DATA SO THAT MACHINE
LEARNING ALGORITHMS WITH USE IT
SO DIVERSITY AND DATA TYPES IS
ABSOLUTELY IMPORTANT GENOMICS
HAVE DIFFERENT TYPES OF
INSTRUMENTS WHICH ARE
SPECIALIZED FOR DIFFERENT ASPECT
SO HOW YOU DEFINE THE DATA, THAT
STANDARD ALSO IS IMPORTANT SO
KEEP THAT IN MIND AS WE TALK
ABOUT DATA STANDARDS.
>>DR. WANG. YOUR HAND UP?
>>YES. THANK YOU, DR. TUCCI. I
WANTED TO SECOND WHAT ANUP JUST
SAID, IN TERMS OF
STANDARDIZATION, WE HAVE TO
THINK ABOUT EVERY STEP IN THE
LIFE CYCLE OF DATA, THE WAY DATA
IS COLLECTED IS VERY CRITICAL.
AT THE SAME TIME I ALSO
UNDERSTAND SOME COUNCIL MEMBERS
POINTS ON EMBRACING DIVERSITY. I
THINK THAT IS VERY IMPORTANT AS
TECHNOLOGIES RAPIDLY ADVANCE.
WHENEVER YOU HAVE A NEW
TECHNOLOGY PLATFORM YOU KIND OF
DISRUPT THE FLOW. SO DATA
ANALYTICS, DATA USE TOOLS IN
THESE EVENTS, I -- THE WAY WE
MANAGE OUR DATA SCIENCE PROGRAM
IS TO PUSH IN BOTH AREAS. THANK
YOU.
>>THANK YOU. WE HAVE MAYBE
THREE MINUTES. IS THERE ANOTHER
SLIDE YOU THINK WE SHOULD,
>>I LOOK AT THE SLIDE ONE OTHER
SUMMARY QUESTION TAKE A LOOK AT
THAT AND SEE HOW TO DO I. THE
QUESTION IS SHOULD AN NIDCD LEAD
AND CALL US AROUND NIDCD,
SPONSORS REPOSITORIES AND
THERE'S DIVERSITY OF THOUGHT,
DRIVERS ARE SOMETHING FOR US TO
CONSIDER AND KEEP IN MIND AS
WITH GO FORWARD THE OTHER IS
BUILD A GRANT MECHANISM TO
ESTABLISH THESE DATA STANDARDS
FOR DESCRIBING THE DATA. THE
QUESTION BECOMES DO WE WANT TO
GIVE GUIDELINES I MENTIONED AT
THE BEGINNING PEOPLE ARE SOME
LEVEL WHAT WE CONSIDER GOOD
QUALITY DATA. SO EACH AREA MIGHT
HAVE ITS OWN DEFINITION SO WE
WANT TO HAVE SOME GUIDELINES SO
PEOPLE CAN FOLLOW IN DEPOSITING
THE DATA REPOSITORY, SAY MRI
MIGHT BE DIFFERENT SET OF
STANDARDS THAN GENOMICS.
FINALLY, DO WE WANT TO PART WITH
OTHER ICs IS ANOTHER ANOTHER
IMPORTANT QUESTION BOTH IN TERMS
OF LEVERAGING WHAT SOMEBODY
BUILT AND RELEASING THE COST FOR
AN IDC.
>>UNRELATED COMMENT. ONE OF THE
GOALS OF NIDCD IS ALSO PROVIDE
TRAINING MY ROLE RESEARCHER AT
COLUMBIA, HOW WE TEACH OUR
STUDENTS ABOUT DATA SCIENCE, SO
I THINK WE LOOK FOR OPPORTUNITY
FOR FUNDING TRAINING GRANTS. SO
THAT ONCE WE GET THIS QUESTION
ANSWERED ABOUT HOW DATA SHOULD
LOOK LIKE, WHAT (INAUDIBLE)
LOOKS LIKE WE HAVE PEOPLE THAT
USE THEM. SO I WANT TO BRING
ATTENTION TO THAT ASPECT THOUGH
IT IS NOT THE FOCUS OF THIS
PARTICULAR.
>>GREAT POINT.
>>THIS MAY BE IN PLACE, BUT
LIKE TRYING TO GET ACCESS TO
MEDICAL DATA AND I HAVE TO
BECOME A VISITING SCHOLAR TO GET
ACCESS TO THE DATA. I THINK THAT
THE IRB SHOULD BE WRITTEN WE
SHOULD REQUIRE IRB TO BE WRITTEN
IN WAY YOU DON'T HAVE TO GO
THROUGH THOSE CHANNELS,
SPECIFIED THAT YOU ARE ABLE TO
SHARE THIS OTHER CERTAIN PEOPLE
THEMSELVES.
>>I THINK THERE'S PRIVACY
CONCERNS AND HOW THEY EVOLVE
OVER TIME WITH ONGOING LIVING
DATABASES, REALLY A HUGE ISSUE.
>>SUSAN, DO YOU HAVE ANY FINAL
THINGS YOU WANT TO BRING UP?
>>NO. I THINK OTHER THAN
(INAUDIBLE) HUGE ISSUE I THINK
NIDCD --
>>SORRY. NIDCD NEEDS TO I'M
SURE WE ARE HAPPY TO ADVISE AND
POTENTIALLY START A TASK FORCE
WHAT ISSUES THERE ARE AND WHAT
ACTUALLY NEEDS TO BE DONE. LOOK
FORWARD TO THAT. THE NIDCD I
TEND TO THINK THAT FOLLOWING THE
LEAD OF THE OTHER INSTITUTES AND
ESTABLISHING A TASK FORCE TO
ESTABLISH WHAT NEEDS TO BE DONE
IS PROBABLY A GOOD DIRECTION.
>>ALL RIGHT. THANK YOU SO MU M.
THANK YOU LU, FOR YOUR REALLY
ENLIGHTENING HELPFUL COMMENTS
ABOUT YOUR DIRECTIONS AT NIDCR.
ALL RIGHT.
>>I AM REALLY PLEASED TO
INTRODUCE DR. KELLEY KING NIDCD
PROGRAM OFFICER TO TELL YOU
ABOUT OUR NEW PARTNERSHIP WITH
THE NATIONAL ACADEMIES OF
SCIENCES ENGINEERING AND
MEDICINE, TO DEVELOP STANDARD
OUTCOMES MEASURES THAT BETTER
RELATED IN MEANINGFUL WAYS TO
THE INDIVIDUALS PERCEPTION A
FUNCTION ABILITY OF THE IMPACT,
HEARING DIFFICULTY. WELCOME,
KELLEY.
>>GREAT. THANK YOU. CAN YOU
HEAR ME OKAY?
>>YES.
>>MY AUDIOLOGY BACKGROUND
IMPROVING THE SIGNAL TO NOISE
RATIO. THANK YOU DR. TUCCI, GOOD
AFTERNOON, EVERYBODY. I THINK
WHILE THE SLIDES ARE SLEDDING I
WILL SAY THAT HOPEFULLY THIS
CONVERSATION DOES YIELD NICELY
WHAT WE TALKED ABOUT. I'M
PLEASED TO SHARE THIS EXCITING
NEW INITIATIVE WITH YOU THAT
NIDCD AND SEVERAL OTHER FEDERAL
PARTNERS I WILL TELL YOU ABOUT
HAVE LAUNCHED WITH NATIONAL
ACADEMIES, THE TOPICS BEING
MEANINGFUL OUTCOME MEASURES IN
ADULT HEARING HEALTHCARE. SOME
OF YOU MAY RECALL THAT NUMBER OF
YEARS AGO WE HAD ANOTHER
PARTNERSHIP WITH THE NATIONAL
ACADEMIES IN ADDITION TO OTHER
AGENCIES REPRESENTED HERE TODAY
ORGANIZATIONS THAT WAS HIGHLY
SUCCESSFUL, CONSENSUS STUDY DONE
ON ADULT HEARING HEALTHCARE AND
ISSUES OF ACCESS AND
AFFORDABILITY. WE USE THAT AS A
BLUEPRINT HOW TO CARRY THIS WORK
FORWARD THAT I WILL TELL YOU
ABOUT TODAY. BY WAY OF
BACKGROUND IT MAY COME AS NO
SURPRISE ADULT HEARING
HEALTHCARE WE LACK STANDARD
OUTCOME MEASURES, RELATED IN
MEANINGFUL WAYS TO HOW AN
INDIVIDUAL PROCEEDS THEIR
FUNCTIONAL ABILITIES AND IMPACTS
THE FUNCTIONAL HEARING
DIFFICULTIES HAVE ON THEIR
QUALITY OF LIFE. SO THE AUDIO
GRAM WHICH IS THE GOLD STANDARD
HOW WE MEASURE HEARING,
EVALUATES RESPONSES TO SIMPLE
TONES AND QUIET ACROSS THE SET
OF DISCRETE FREQUENCIES. IT IS
NOT A GREAT CROSS PROXY FOR
SELF-REPORT AND HOW SOMEONE
FEELS THEY ARE HEARING. IT ALSO
GENERATES A LOT OF DATA BUT
THERE IS NOT GOOD CONSENSUS
WHICH OF THOSE DATA POINTS ARE
APPROPRIATE END POINTS FOR
EXAMPLE WHEN IT COMES TO
DETERMINING EFFICACY AROUND
THERAPEUTIC INTERVENTION.
MOREOVER, YOU CAN HAVE
STATISTICALLY SIGNIFICANT CHANGE
ON THE AUDIO GRAM AND INDIVIDUAL
MAY NOT PERCEIVE IT. AND WHETHER
OR NOT THEY PERCEIVE IT MAY HAVE
NO BEARING WHETHER THEY FEEL
LIKE THEY ARE IMPROVED OR
SATISFIED WITH THE INTERVENTION
WE HAVE OTHER VALID WAYS TO
MEASURE HEARING THAT MAY BE
MEANINGFUL TO CLINICIANS, WHO
CAN LOOK AT CHANGES IN ADR OR
OTC CONDITION BUT A LOT OF THEM
DON'T DO A GOOD JOB OF MAPPING
ON INDIVIDUAL'S EXPERIENCE. SO
OUTCOME MEASURES MEANINGFUL TO
INDIVIDUAL AND CLINICIAN, THAT
CAN BE STANDARDLY APPLIED IN
ADULT HEARING HEALTHCARE ARE
NEEDED TO HELP US FIGURE OUT
WHICH OF THESE INTERVENTIONS
ACTUALLY IMPROVE THE LIVES OF
PEOPLE WITH HEARING LOSS. WHILE
WE DETERMINE QUANTITATIVE AND
QUALITATIVE ASPECT OF THAT
IMPROVEMENT. THIS APPROACH HAS
BROAD REACH, EVERYWHERE FROM THE
INDIVIDUAL WITH HEARING LOSS
THROUGH THE RESEARCHERS WHO ARE
GENERATING THE EVIDENCE THAT
DRIVE POLICY AND REGULATION. SO
THERE HAD IS AN IMPORTANT
QUESTION, NOT EXHAUSTIVE LIST IT
SORT OF FRAMES IT, EVERYTHING
OKAY? THAT SORT OF FRAMES THIS
TOPIC, SO FOR EXAMPLE, WHAT ARE
THE CHALLENGES IN DEVELOPING
OUTCOME MEASURES OR METRICS LIKE
THIS? THIS IS NOT THE FIRST TIME
CONVERSATION HAS BEEN HAD SO WHY
DON'T WE HAVE IT YET? LOOKING AT
THE BARRIERS ARE OR CHALLENGES
IS IMPORTANT BUT EVEN MORE
IMPORTANT PERHAPS IS ASKING
OURSELF WHAT IS ARE THE GAMES TO
BE -- GAINS TO BE MADE. WHAT
MIGHT WE BENEFIT OR HOW MIGHT WE
ALL BENEFIT FROM POOR EXAMPLE
LARGE UPTAKE AND ADOPTION WITH
EYE TOWARD STANDARDIZED OR
UNIVERSAL APPLICATION LIKE WE
TALKED ABOUT ABOUT. SHOULD THEE
METRICS AN OUTCOMES DIFFERENCE
FROM TYPE OF APPLICATION OR
INTERVENTION? FOR EXAMPLE, WE
CAN ENVISION INTERVENTIONS
GEARED TOWARD PERMANENT HEARING
LOSS, BEING DIFFERENT THAN
INTERVENTIONS GEARED TOWARD
HEARING LOSS IN THE ACUTE PHASE,
TARGET POPULATIONS ARE
DIFFERENT, THE TIME FRAME IS
DIFFERENT. THE ISSUES AROUND
REGULATION AND SAFETY ARE LIKELY
DIFFERENT. SHOULD THEY DIFFER
ACCORDING TO USE BY VARIOUS
INVESTED PARTIES? WILL THE END
POINTS THAT MEAN SOMETHING TO
RESEARCHERS AND THE REGULATORS
NECESSARILY BE DIFFERENT THAN
THOSE THAT MATTER LARGER GENERAL
PUBLIC. WE NEED TO THINK ABOUT
WHAT SUCCESS LOOKS LIKE. SO NOT
JUST AN IDEALIZED VERSION OF
SUCCESS BUT WHAT A COMPETITIVE
LEVEL OF SUCCESS MIGHT BE OR
EVEN A MARGINAL LEVEL ACHIEVABLE
SUCCESS AND HOW THAT COMPARES TO
THE CURRENT STATUS QUO. I THINK
WHEN WE EMBARK ON ACTIVITY LIKE
THIS, WE NEED TO BE CAREFUL NOT
TO MAKE PERFECT THE ENEMY OF THE
GOOD. WE NEED TO MOVE THE
NEEDLE. IF IT FEELS LIKE THERE'S
URGENCY IN WHAT I'M SAYING I
BELIEVE IT IS. WE HAVE A GROWING
LIST OF INTERVENTIONS THAT ARE
TARGETING HEARING LOSS. THEY ARE
INTERVENTIONS THAT ARE
LEVERAGING TECHNOLOGY AND
HARDWARE, THAT WAS GROWING BUT
ALSO PHARMACEUTICAL
INTERVENTIONS BIOLOGICS, GENE
THERAPY, THEY ARE COMING OR THEY
ARE HERE. IF WE DON'T USE THIS
WORK WE WON'T ESTABLISH WHICH
MAKE IMPACT ON INDIVIDUAL LIVES
SO THIS IS A BOND COMPLEX THORNY
URGENT ISSUE. WE FELT BRINGING
TO THE NATIONAL ACADEMIES WAS
EXACTLY THE RIGHT SPACE FOR
WHERE TO PUT THIS WORK. THOSE
NOT FAMILIAR NATIONAL ACADEMIES
OF SCIENCE ENGINEERING AND
MEDICINE ARE NON-PROFIT
INSTITUTIONS THAT PROVIDE EXPERT
ADVICE ON SOME OF THE MOST
PRESSING CHALLENGES FACING THE
NATION AND THE WORLD. CHARTERED
BY ABRAHAM LINCOLN IN 1863, THE
CHARTER NOT ONLY ENABLES
NATIONAL ACADEMIES TO ENGAGE
WITH CONGRESS AND FEDERAL
AGENCIES, IT ENCOURAGES THEM TO
DO SO. THE ACADEMY SHALL WHEN
CALLED UPON BY DEPARTMENT OF
GOVERNMENT INVESTIGATE EXAMINE
EXPERIMENT AND REPORT UPON ANY
SUBJECTS OF SCIENCE OR ART,
NOTICING NOW THESE ARE THE DRAFT
SLIDES. WE ARE GOING TO WORK
WITH IT AND IT WILL BE FINE BUT
U.S. SOMEWHERE GOING TO POINT
THAT OUT THIS IS THE DRAFT
VERSION. SO MISSION NATIONAL
ACADEMY POSTED UP HERE, I WILL
ADD TO IT THEY OPERATE UNDER A
CORE SET OF VALUES THAT INCLUDE
INDEPENDENT INTEGRITY
INCLUSIVITY, TRUST, RIGOR AND
OBJECTIVITY. SO WE CAN SEE WE
FELT LIKE IT WAS IMPORTANT
BRINGING THIS WORK TO PARTNER
WITH THEM. THE,NA MILLION
ACADEMIES HAS A TRIED AND TRUE
AND VERY WELL UNDERSTOOD UNIQUE
STUDY PROCESS THEY APPLIED IN A
NUMBER OF WAYS THAT OUTLINE HERE
IN THE SCHEMATIC SO THE VERY
FIRST PERHAPS MOST IMPORTANT
STEP IS THAT THE STUDY IS THE
SCIENCE BECAUSE ALL THE WORK
FLOWS THROUGH HERE AND WE WILL
TALK ABOUT WHAT ABOUT THAT
SPECIFIC STATEMENT IS IN A
MINUTE. THE NEXT PROCESS
INVOLVES SELECTION OF COMMITTEE
OF EXPERTS WHO WILL DO THIS WORK
AND WE ARE IN THAT PROCESS RIGHT
NOW. THERE IS AN OPEN CALL FOR
NOMINATION WITH THIS COMMITTEE
AND I WILL HIGHLIGHT THAT MORE
IN A MINUTE. ONCE THE COMMITTEE
IS FORMED THEY UNDERTAKE THEIR
WORK THEY OPERATE UNDER A SERIES
OF GOVERNING PROVISION, NOT ALL
OF WHICH I HAVE LISTED HERE AND
SOME OF WHICH I WANTED TO
HIGHLIGHT. FIRST AND FOREMOST
THAT THIS COMMITTEE WORK IS
COMPLETELY INDEPENDENT. THERE IS
NO NOODLING FROM FEDERAL AGENCY
OR THAT TAKES PLACE WORK IS
THEIR WORK. THEY EMPHASIZE
TRANSPARENCY AND COMMUNICATION
WITH THE PUBLIC. SO INFORMATION
ABOUT THE STUDY PROCESS, THE
COMMITTEE MEMBERS, THE
ACTIVITIES OF THE COMMITTEE, ARE
ALL MADE PUBLIC AND THE FINAL
REPORT IS MADE AVAILABLE TO THE
PUBLIC. I APOLOGIZE FOR THESE
NEXT FEW SLIDES, THERE'S WAY TOO
MANY WORDS AND PROMISE I WON'T
READ THEM ALL. THIS IS THE
OFFICIAL STATEMENT. AVAILABLE ON
THE WEBSITE I WILL POINT YOU
TOWARDS. I WANT TO HIGHLIGHT THE
MAIN POINTS. THIS IS THE WORK
THE COMMITTEE THAT FORMS WILL BE
ASKED TO DO. THEY WILL EXAMINE
THE STATE OF THE SCIENCE AND
OUTCOMES RESEARCH FOR
INTERVENTIONS IN ADULT HEARING
HEALTHCARE. WE HAVE EXCLUDED
SURGICALLY PLACED PROSTHETIC
DEVICES BECAUSE RECENT YEARS
THERE'S BEEN SIMILAR WORK THAT'S
BEEN ONGOING IN COW CLEAR
IMPLANTS AND WE DID NOT --
COCHLEAR IMPLANTS AND DIDN'T
WANT THE WORK TO BE DUPLICATIVE.
THERE'S EMPHASIS ON MEASURES
MEANINGFUL TO INDIVIDUAL AND
CLINICIAN. SPECIFICALLY THE
COMMITTEE IS CHARGED WITH
IDENTIFYING AND ENGAGING
APPROPRIATE STAKEHOLDERS
INCLUDING THOSE RELEVANT FEDERAL
AGENCIES, THE ACT EPIDEMICKIC
AND PROFESSIONAL COMMUNITIES,
INDUSTRY, PATIENT AND CONSUMER
GROUPS, TO HEAR FROM THEM AND
GAIN THEIR PERSPECTIVE AS INPUT
TO THE COMMITTEE DELIBERATIONS
THAT TAKE PLACE. THEY WILL
PROVIDE A CONTEXTUAL BACKGROUND
DESCRIBING HOW HEARING
CONTRIBUTES TO OVERALL HEALTH
AND WELL BEING AND DESCRIBE
VARIOUS CLASSES OF INTERVENTIONS
FOR HEARING LOSS. THEY WILL
LOOK AT DESCRIBING THE OUTCOME
MEASURES THAT ARE CURRENTLY
AVAILABLE TO ASSESS HEARING
FUNCTION IN ADULTS. WHAT DO WE
CURRENTLY HAVE? IMPORTANTLY,
THEY WILL LOOK AT DOMAINS BEYOND
COMMUNICATION THAT SHOULD BE
CONSIDERED IN THINKING ABOUT
THIS. SO FOR EXAMPLE, SOCIAL
CONNECTIVITY, ACTIVITY
LIMITATION, ECONOMIC
PRODUCTIVITY. THEY ALSO WILL
HELP IDENTIFY GAPS FOR
DEVELOPMENT OF NEW OUTCOME
MEASURES ARE URGENTLY NEEDED.
THIS IS THE WORK THAT COULD
DRIVE FUTURE RESEARCH AND
INNOVATION IN THE SHORT TERM.
THEY WILL IDENTIFY WHICH
SETTINGS THE METRICS ARE
APPLICABLE. SO AGAIN THE IDEA OF
THE OUTCOMES THAT APPLY TO
EFFICACY IN A CLINICAL TRIAL,
THE SAME AS ASSESSING
IMPROVEMENT AND SATISFACTION AT
THE INDIVIDUAL LEVEL IN THE
CLINIC. THEY WILL PROVIDE
RECOMMENDATIONS ON THE
STANDARDIZED USE OF EXISTING
OUTCOME MEASURES. SO THEY WILL
RECOMMEND A CORE SET OF MEASURES
USED NOW, AND THEN ALSO WHAT THE
NECESSARY QUALITIES AND
FRAMEWORK FOR ADOPTION OF NEW
MEANINGFUL MEASURES COULD BE AND
HOW THEY CAN BE IMPLEMENTED IN
LONG TERM AND SHORT TERM. ALL
THIS IS IN THE CONTEXT OF HAVING
AND I TOWARD LARGE SCALE
ADOPTION AND STANDARDIZATION,
IDEA OF NATIONAL DATABASE USE
AND REPOSITORY. SO I WANT TO
UNDERSCORE THE COMMITTEE IS
GIVEN DIRECTIVE IN THE ABSENCE
IN CASES WHERE ROBUST EVIDENCE
IS LACKING OR ABSENT, THE
COMMITTEE IS ENCOURAGED TO MAKE
RECOMMENDATIONS BASED ON SOUND
SCIENTIFIC REASONING AND THE
CONTEXT OF THE CURRENT
HEALTHCARE ENVIRONMENT. THIS IS
IMPORTANT BECAUSE THEY MAY VERY
EASILY RUN INTO DEAD ENDS OR
AREAS WHERE COMPELLING EVIDENCE
DOES MANGE THIS AND WE DON'T
WANT THAT TO BE A BARRIER TO
VAMPING IT FORWA FORWARD. PERFET
EXAMPLE WHERE LANGUAGE LIKE THIS
IS IMPACTFUL, THE LAST CONSENSUS
STUDY THE COMMITTEE WOUND UP
MAKING THE RELATION TO CREATE A
NEW CATEGORY OF OVER THE COUNTER
HEARING AIDS THERE WAS NOT
COMPELLING EVIDENCE AT THE TIME
TO BACK THAT UP BUT IT WAS SOUND
SCIENTIFIC REASONING. THE
PROJECT TIME LINE IS CAPTURED
HERE, THIS WILL -- MAJORITY OF
WORK WILL BE DONE OVER THE NEXT
18 MONTHS, FINAL REPORT
PUBLISHED WITHIN TWO YEARS. WE
HAVE ALREADY DEFINED THE STUDY
SO WE ARE AT THE POINT OF
NATIONAL ACADEMIES I SHOULD BE
CLEAR IS AT THE POINT OF
COMMITTEE FORMATION. WE EXECUTED
THIS CONTRACT IN LATE JULY 2023.
THAT MEANS ONCE THE COMMITTEE IS
FORMED THIS FALL THEY WILL BEGIN
MEETING ALMOST IMMEDIATELY AND
THEIR DELIBERATIONS AND
INFORMATION GATHERING WILL TAKE
PLACE PREPARATION IN THE REPORT,
WHAT IT WILLK LOU LIKE WILL ALSO
TAKE PLACE FROM THE BEGINNING
AND THE STUDY SHOULD BE
PUBLISHED IN EARLY SPRING 2025.
A PROJECT WEBSITE IS ACTIVE AND
LIVE NATIONAL ACADEMY HOME, YOU
CAN GO THERE SO THE NEXT HANDFUL
OF DAYS YOU CAN GO THERE AND
NOMINATE EXPERTS EXCEPTIONAL IN
THIS SPACE. SO SEPTEMBER 21ST IN
FACT YOU CAN NOMINATE EXPERTS
YOU THINK SHOULD SERVE ON THIS
COMMITTEE APPROXIMATELY 14
PEOPLE WILL MAKE UP THE
COMMITTEE AND THEY ARE LOOKING
FOR THOUGHT I HAD IT BUT ONLY
GOING BACKWARDS. A LOT OF ME AND
NO SLIDES. SO I WILL STEP AWAY.
I THINK I CAN DO THIS OFF
SCRIPT. SO THE THEY ARE LOOKING
FOR APPROXIMATELY 14 MEMBERS
THAT OPEN CALL FOR NOMINATIONS
CURRENTLY EXIST. I ENCOURAGE US
TO THINK DEEPLY ABOUT NOMINATING
YOURSELF OR SOMEONE IN YOUR
ORBIT THAT YOU THINK IS
EXCEPTIONALAL. THEY ARE LOOKING
FOR EXPERTISE IN HEARING AND
HEAR LOSS. BUT WE NEED TO THINK
BEYOND OUR FIELD TO REALLY
ADVANCE THIS. SO FOLKS WHO HAVE
EXPERTISE IN PATIENT REPORTED
OUTCOME MEASURES MAYBE SOME
OTHER FIELDS WHO ARE EXPERTS IN
METRICS, WE NEED TO BE THINKING
BROADLY ABOUT THAT. SO PLEASE
CAST THE NET WIDELY TO STAY ON
THE PROJECT WEB SOOT OR BOOK
MARKET AND CHECK BACK IN Z THE
PROJECT MOVES FORWARD. IT WILL
BE POSTED THERE. NIDCD IS JOINED
IN SPONSORSHIP WITH THESE
ACTIVITIES. THANK YOU. BY OUR
PARTNERS AT THE NATIONAL
INSTITUTE ON AGING, THE CENTERS
FOR DISEASE CONTROL AND
PREVENTION, THE DEPARTMENT OF
DEFENSE, AND THE DEPARTMENT OF
VETERAN AFFAIRS, I'M GRATEFUL TO
THE FOLKS LISTED ON THIS SLIDE
FOR NOT ONLY RECOGNIZING THE
IMPORTANCE OF THIS WORK AND
URGENCY AROUND IT BUT JUMPING
THROUGH MANY HOOPS TO TWO
THROUGH FEDERAL SPONSORSHIP OF
ACTIVITY LIKE THIS. IT IS NOT --
BUT I ALSO WANT TO THANK TALKING
ABOUT SOMETHING THROUGH HOOP A
NUMBER OF MY COLLEAGUES AT NIDCD
WHO WORKED REALLY HARD TO MAKE
THIS HAPPEN FOR REASONS BEYOND
THE SCOPE OF THIS PAUSE I WILL
SAY VERY SMALL WINDOW WHICH WE
CAN EXECUTE THIS CONTRACT, WE
HAD TO GET IT RIGHT IMMEDIATELY
AND A LOT OF FOLKS CAME TOGETHER
TO MAKE THAT HAPPEN AND WE DID
IT. SO I'M GRATEFUL FOR THAT. IF
YOU SAW A SLIDE, QR CODE ANT
WEBSITE, I WILL MAKE THE SLIDES
AVAILABLE AND THANK YOU FOR YOUR
TIME.
[APPLAUSE]
>>THANK YOU VERY MUCH, KELLEY
FOR ALL YOUR EFFORTS AND THIS
GREAT PRESENTATION. REALLY
EXCITED ABOUT THIS. WE THOUGHT
THIS IS THE START OF MANY
SUBJECTIVITIES BUT THIS IS A
HEAVY LIFT. VERY MUCH APPRECIATE
YOUR WORK. ANY COMMENTS OR
DISCUSSION.
>>SO THIS IS REALLY EXCITING I
CAN'T WAIT TO HEAR WHAT THEY
COME UP WITH. IT GOT ME THINKING
ABOUT CHILDREN. AND WHAT
PARALLEL RECOMMENDATIONS MIGHT
BE GENERATED, PERHAPS THAT COULD
BE THE FOLLOW UP.
>>I DON'T DISAGREE. ONE OF THE
EXCITING THINGS ABOUT THIS WORK
IS IF IT IS SUCCESSFUL DEPENDING
HOW IT IS SUCCESSFUL IT COULD BE
A MODEL NOT JUST FOR OUR OTHER
MISSION AREAS BUT MEDIA TRICK
AND OTHER APPLICATIONS.
>>THIS POINT THERE IS A LOT TO
DO.
>>I WANT TO SAY I'M EXCITED
ABOUT THIS WORK AND
CONGRATULATIONS THAT YOU PUSHED
THIS THROUGH. IT IS REALLY
NEEDED AND I LOOK FORWARD TO ITS
OUTCOME.
>>ALL RIGHT. THANK YOU, VERY
MUCH KELLEY. I THINK WE WILL
TAKE A BREAK AND COME BACK AT
>>UNIVERSAL TEST. SO WELCOME
DR. PARMA
>>. THANK YOU DR. TUCCI, I'M
VERY HAPPY TO BE HERE. IS THE
SOUND OKAY? LOUDER. GIVE ME ONE
SECOND. UH-HUH. I WILL SHARE
AGAIN. WE SHOULD BE READY TO GO.
AUDIO GOOD? TODAY WE ARE GOING
TO START FROM THE END OF THE
TALK AND WE ARE GOING TO START
FROM TAKE HOME MESSAGES. SO
FIRST OF ALL WHAT I WANT TO
POINT OUT IS THAT COVID-19 HAS
EXPOSED THE GAPS IN OUR
PREPAREDNESS FOR MEDICAL CARE
AND I WILL USE THE CABLE
FRACTION TO EXEMPLIFY THAT IN A
COUPLE OF WAYS. SECOND WE ARE
NOW -- WE HAVE THE BALANCE
INNOVATION RECENTLY THERE WOULD
ALLOW TO IMPLEMENT POPULATION
SCREENING MALFUNCTION, TODAY IS
NOT REALLY AVAILABLE AND I WILL
TRY TO EXPLAIN IT LIST MY
OPINION WHAT ARE THE REASON WHY
THIS IS NOT THE CASE. THIRD, WHY
SHOULD WE CARE ABOUT HAVING
ROUTINE SMELL TEST OR VERSAL
SMELL TESTING. POPULATION
SCREENING FOR CELL FUNCTION? I
BELIEVE WITH THE DATA THAT I
WILL PRESENT TODAY WE HAVE SOLID
IDEA OF THE KIND OF BREAK
THROUGH THAT WE CAN HAVE IN
SEVERAL AREAS OF HEALTHCARE
INCLUDING NUTRITION MENTAL
HEALTH AND BRAIN HEALTH, IF WE
WERE TO TRACK CONSISTENTLY SMALL
FUNCTION THROUGHOUT THE --
ACROSS DEVELOPMENT. NOW LET ME
TAKE YOU BACK. THESE ARE THE
THREE POINTS THAT I WANT TO MAKE
BUT IT ALL STARTS WITH COVID-19.
SO I WANT TO TAKE YOU BACK FOR
ACCEPTANCE FEBRUARY AND MARCH OF
2020. MAYBE NOT GREAT MEMORIES
BUT IT WAS FOR THE SENSORY
COMMUNITY A TIME OF UNITY AN
TIME OF HARD WORK. SO MANY OF US
WORKING IN SMALL TEAMS WE START
RECEIVING E EMAILS FROM PEOPLE
OR LOOK AT TWITTER AND SAID A
LOT OF PATIENTS WERE ASKING I
LOST MY SMELL AN TASTE, I HAVE
COVID TELL US MORE PLEASE. WE
ARE AT OOH LOSS. WE TALK TO THE
DOCTORS, THEY ARE NOT ABLE TO
GIVE US ANSWERS. THIS THEN
BECAME ALL THE MOVEMENT SO WE
STARTED LOOKING AT DATA RESULTS
AND STARTED TALKING AT EACH
OTHER AND I THINK THE FIRST SET
OF DATA THAT WAS CONVINCING
ABOUT THE FACT THAT WE NEEDED TO
PAY ATTENTION TO LOSS OF SMELL
AND TASTE TASTE, THE DATA COMING
FROM REPORTS WHERE MILLIONS OF
PEOPLE IN THE UK AND LATER ON IN
THE U.S., WERE ABLE TO
(INAUDIBLE) ON A DAILY BASIS THE
SERIES OF SYMPTOMS THAT ARE THE
ONES THAT NEED TO BE ON THE Y
AXIS OF THESE GRAPHS. SO THERE
WERE SYMPTOMS LIKE FA TEAL AND
PERSISTENT COUGH, FEVER, LOSS OF
SMELL IN PARTICULAR WAS
ESSENTIALLY THAT WAS THE BEST
PREDICTOR OF HAVING COVID COVIDT
IS NOT NEW LAST BUT AT --
PREGNANT PRE-DICK TORR OF
COVID-19, ONE OF THE INDICATORS
OR THE SYMPTOMS THAT THE CDC
USED TO DEFINE COVID-19. THIS
WAS THE SYMPTOM ADDED APRIL 27
OF 2020. LATER ON THE PANDEMIC
WE STARTED HAVING SELF-REPORTED
DATA THROUGH SOME OBJECTIVE
EVIDENCE AND BY OBJECTIVE I MEAN
COLLECTIVE THROUGH PHYSICAL
METHODS INDICATING THAT YEAH,
THERE WAS A CAUSAL RELATIONSHIP
BETWEEN INFECTION OF SARS COV-2
AND LOSS OF SMELL. THIS IS THE
BEST STUDY THAT I CAN PULL UP.
SO HERE WE HAVE 36 PEOPLE THAT
DIDN'T WANT TO GET VACCINATED
AND DECIDED TO GO TO A HOSPITAL
AND BE INOCULATED WITH SARS
COV-2 VIRUS. ONE OF THE EARLIEST
VARIANTS AVAILABLE AND THEN THEY
WERE FOLLOWED FOR THEIR SYMPTOMS
FOR 28 DAYS. AS YOU CAN SEE
FROM THIS GRAPH, AND PURPLE LINE
IN PARTICULAR, THAT IS ABSENT
CHANGE OR CHANGE IN SMELL SCORE.
THE HIGHER THE CHANGE, THE
HIGHER THE DIFFERENCE IN SMELL
SCORES SO AS YOU CAN SEE FROM
THE VERY BEGINNING, WE HAVE A
VERY LOSS OF SMELL THREE DAYS TO
OTHER SYMPTOMS THAT ARE
INDICATED WITH THE RED LINE AND
THEN YOU HAVE MORE OR LESS A
PERIOD OF TWO WEEKS PEOPLE ARE
MOVING THEIR SENSE OF SMELL AND
THEN SLOWLY REGAINING IT. THIS
IS BASICALLY THE TREND THAT WE
HAVE SEEN IN THE MAJORITY OF
PATIENTS. APPROXIMATELY 85% OF
PATIENTS AFTER THE DELTA VARIANT
LOSES THEIR SENSE OF -- LOSS
THEIR SENSE OF SMELL. BUT
COVERED WITHIN TWO WEEKS. OTHERS
TEND TO MAINTAIN A PERSISTENT
SMELL LOSS FOR UP TO TWO YEARS
AND EVEN THREE YEARS NOW. FOR
SOME PEOPLE THIS HAS NOT GONE
BACK TO THEIR BASELINE. WHY DO
WE CARE? WHY IS IT IMPORTANT TO
MONITOR AND TO KNOW THAT COVID
PRODUCED A LARGE NUMBER OF
PEOPLE WITH SMELL LOSS. IF WE
LOOK AT DATA FROM THAT PRE-DATES
THE PANDEMIC OF PEOPLE LOSING
THEIR SENSE OF SMELL DUE TO
TRAUMATIC BRAIN INJURY, DUE TO
PARTICULAR TREATMENT OR SIMPLY
DUE TO OTHER VIRUSES WHAT WE
KNOW IS PEOPLE WITH SMELL LOSS
REPORT REDUCED QUALITY OF LIFE
AND WELL BEING. IN P AREAS OF
SUCH THE ONES THAT ARE INDICATED
IN THE GRAPH TO THE RIGHT. SO
PEOPLE REPORT TO THE ENJOYMENT
OF FOOD, MAY EAT MORE OR LESS
DEPENDING ON THE TYPE OF SMELL
DISORDERS THAT THEY HAVE. THEY
TAYLOR TO PERCEIVE FIRE OR GAS
SO THERE IS RISK OF
ENVIRONMENTAL HAZARDS, THEY
REPORT FROM PERSONALLY GENE
PROBLEMS WITH SOCIAL LIFE
CONNECTED TO THAT. AS WELL AS
PROBLEMS AT WORK. I PERSONALLY
TALKED (INAUDIBLE) DURING THE
PANDEMIC LOSS OF SENSE OF SMELL
AND THEY HAVE INABILITY TO CARRY
ON WITH THEIR PROFESSIONAL LIFE
WITH SIGNIFICANTLY IMPACTED BUT
IT (INAUDIBLE) EXPERIENCE
RECOGNIZED BY PROVIDER AND BY
SPECIALIST. SO THE SENSE OF
SMELL IS IMPORTANT AND IF WE
IMAGINE A LITTLE BIT OF AN
ICEBERG WE CAN SEE THAT WE DON'T
REALLY NOTICE HOW IMPORTANT IT
IS UNTIL WE STARTED LOSING THIS
FUNCTION. IT IS A REMINDER OF
FUNCTION WE PERFORM, LIKE HOW WE
ARE DIRECTING OURSELVES TO FOOD,
IT IMPACTS THE WAY WE EAT. HOW
CONNECTED TO PEOPLE, PARENTAL
RELATIONSHIP AS WELL AS MEETING
RELATIONSHIPS AND ESSENTIAL FOR
HAZARDS THAT ARE IN THE
ENVIRONMENT THAT WE CANNOT
DETECT OTHERWISE. PEOPLE THAT
HAVE COMPLETE SMELL LOSS OR EVEN
PARTIAL SMELL LOSS, THEY ARE --
THEY TEND TO BE MORE VULNERABLE.
SO DURING THE PANDEMIC YOU HEARD
A LOT OF TIMES TALKING ABOUT
SMELL LOSS, FOR THE FIRST TIME
THE PUBLIC KNEW WHAT ANOSNIA
MEANT BUT NOT ONLY THAT THINKING
COMPLETE SMELL LOSS IS NOT THE
WHOLE STORY, WE HAVE PEOPLE THAT
PARTIALLY LOST THEIR SENSE OF
SMALL, WE HAVE SMELL
DISTORTIONS. THIS IS FROM THE
QUALITY OF LIFE PERSPECTIVE,
EVEN A MORE DEBILITATING
DISORDER. DRINKING YOUR COFFEE
WHICH IS SOMETHING MOST OF US DO
EVERY DAY, AND THEN IMAGINE
SMELLING LIKE SEWAGE OR TERRIBLE
SMELL EVERY MORNING DAY OF DAY.
SOME -- DAY AFTER DAY, SOME WITH
PAROSMIA CANNOT EAT MULTIPLE
FOODS, THEY STICK TO ONE FOOD
THEN CARRY ON WITH THEIR MEAL.
SO THIS CHEERILY CHANGES THE WAY
PEOPLE EXPERIENCE LIFE. SO WE
KNEW THAT. LIKE COUNTRY
SCIENTISTS WERE ALREADY AWARE OF
THIS LOSS THE TAXING QUALITY OF
LIFE CHANGES THAT THE PATIENT
WOULD EXPERIENCE SO WE DECIDED
TO GET TOGETHER AND YOU CAN ONLY
THE SMALL PORTION OF THE GROUP
THAT WE CREATED AND CO-FOUNDED
WHICH IS CALLED THE GOOGLE
CONSORTIUM FOR CHEMOSENSORY
RESEARCH. EARLY IN THE MAKE WE
JUMPED ON A ZOOM CALL BECAUSE
THAT'S WHEN WE STARTED GETTING
USED TO DOING AND WE THOUGHT
OKAY, WHY DON'T WE CREATE THE
SURVEY TO ANALYZE WHAT HAPPENS
TO THE SENSE OF SMELL SENSE OF
TEST AND SENSE OF CHEMISTRY SO
THOSE ARE NASAL AND ORAL
PROPERTIES THAT ALLOW US TO
EXPERIENCE TEMPERATURE AND
SITESES AS CARB NATION THAT ARE
IMPORTANT FOR THE WAY WE EAT AND
DRINK AND WE THOUGHT MAYBE WE
WOULD BE 10, 20 PEOPLE MAYBE GET
TO 50 PEOPLE. IN THE SPAN OF TEN
DAYS WE WERE MORE THAN 400
PEOPLE ACROSS THE WORLD. NOW WE
ARE MORE THAN 700 ACROSS 71
COUNTRIES. SO THERE WAS CLEARLY
A NEED FOR THE COMMUNITY TO GET
TOGETHER AND UNIFY TO TRY TO
STUDY WHAT WAS HAPPENING WITH
COVID-19. THESE ARE THE TWO
MAJOR PRODUCTS. TWO PAPERS WITH
A LOT OF AUTHORS SO IMAGINE HOW
THE WRIGHT WRITHE THOSE PAPERS
FOR A SECOND. BUT WE WERE ABLE
TO PRODUCE SOME RESULTS THAT
REALLY HAD EXTERNAL VALIDI VALIO
COULD BE GENERALIZABLE TO A
LARGE PORTION OF THE POPULATION
BECAUSE WE WERE ABLE TO COLLECT
FROM SUCH DIVERSE PLACES. MOST
OF THIS DATA THAT I AM
PRESENTING ARE SELF-REPORTS.
PARTLY BECAUSE THIS IS WHAT WE
WERE ALLOWED TO DO IN THE
GENERAL POPULATION AT THE
BEGINNING OF THE PANDEMIC. IT
WAS HARD AND WE DIDN'T HAVE THE
FUNDS TO PROVIDE PSYCHOPHYSICAL
TESTS TO EVERYONE SO ONE WE ASK
Z PEOPLE HOW WAS YOUR SENSE OF
SMELL BEFORE COVID AND HOW IT IS
DURING COVID- COVID-19. SOMETHIE
THAN 4,000 PEOPLE AND AS YOU CAN
SEE FROM THE GRAPH ON THE Y AXIS
THE SMELL RATING YOU SEE WE HAVE
CREATED 80 POINTS. SO PEOPLE
LOST THEIR COMPLETELY LOSS THEIR
SENSE OF SMELL AND IT WAS
SUDDEN, IT WAS NOT NASAL
OBSTRUCTION. WE THOUGHT THIS
WOULD BE A CONDUCTIVE DISORDER
AND PEOPLE WOULD REGAIN THEIR
SENSE OF SMELL AS EXPECTED. BUT
WE WERE WRONG. THIS WAS NOT THE
MECHANISM BEHIND THE SENSE OF
SMELL. WE KEPT GOING WITH THE
SURVEY WE HAVE IN 35 LANGUAGES,
AND WE ARE PARTICULARLY
INTERESTED IN SEEING WHAT WOULD
HAPPEN AT THE BEGINNING OF FLU
SEASON IN THE NORTHERN
HEMISPHERE AND DEVICE A STUDY
KNOWING WHAT OUR COLLEAGUES IN
SOUTHERN INDIA HAD EXPERIEN EXP
WE ENROLLED 808,000 PEOPLE GIVE
OR TAKE AND HAVE TWO GROUPS
BASED ON THE RESULTS TO THE
COVID-19 PCR TEST AT THE TIME.
AND WE WERE ABLE TO DETERMINE
UNDER SELF-REPORT WHAT ARE
PEOPLE WITH THE FLU OR WITH
COVID-19 HAD A DIFFERENT RATIO
OF SMELL DISORDER. WE EXPECTED
BROTH GROUPS HAD REDUCTION IN
SMELL LOSS AND SMELL LOSS IN
RESPONDING REPORTED SMELL
FUNCTION BUT COVID-19 GROUP WAS
QUITE MAGNIFIED IN THAT
EXPERIENCE. WE WERE ABLE BY
LOOKING DIFFERENT WAY TO ASK THE
QUESTION TO IDENTIFY WHAT IS THE
MOST CONCISE QUESTION TO GIVE US
THE BEST INFORMATION TO IDENTIFY
WHETHER SMELL OR TASTE ARE
INDICATERS OF COVID-19. AND
BASED ON OUR SURVEY WHAT WE WERE
ABLE TO DETERMINE IS THAT THE
QUESTION THAT IS A READING
QUESTION FROM SCALE OF 0 TO 100
ABOUT YOUR CURRENT ABILITY TO
SMELL WAS ABLE TO DISCRIMINATE
PEOPLE WITH COVID-19 FROM PEOPLE
THAT HAVE RESPIRATORY DISORDER
THAT WAS NOT COVID-19 WITH AN
ACCURACY OF 71%. SO AS YOU CAN
SEE IN THE RSV CURVE HERE I
WOULD LOVE TO POINT TO IF I CAN
GET TO THAT. WE HAVE ON THE Y
AXIS THE SENSITIVITY, AND ON THE
X AXIS ONE MINUS SPECIFICITY, WE
WANT THIS TO BE AS CLOSE TO .1
AS POSSIBLE. TO DETERMINE THIS
IS A GOOD TEST. SO SMELL ALONE
LOOKING AT ONE QUESTION ALLOW US
TO DISCRIMINATE COVID-19
POSITIVE FROM NEGATIVE BY 71%
WHICH IS A APPROXIMATELY 20%
BETTER THAN WHAT THE CDC TRIAL
WAS DOING AT THE TIME IN THE
SAME POPULATION. ASKING ABOUT
FEVER OR COUGH OR RESPIRATORY
ISSUE WAS NOT A GOOD METRIC TO
DISCRIMINATE PEOPLE THAT HAVE A
RESPIRATORY DISORDER BUT NOT
COVID-19. WE THINK OF
SELF-REPORT AS LOWEST LEVEL OF
EVIDENCE WE CAN HAVE SO WHY EVEN
INVEST IN ASKING PEOPLE
QUESTIONS ABOUT THEIR
EXPERIENCES ABOUT THE SENSES.
PARTICULARLY IN OLFACTION PEOPLE
DON'T HAVE A GENERAL GOOD LEVEL
OF AWARENESS WHAT CAN THEY TELL
US? THEY CAN TELL US A LOT. SO
FROM A PUBLIC HEALTH PERSPECTIVE
DURING THE FIRST WAVE OF COVID
WE REALIZE THAT ASKING PEOPLE TO
MONITOR SENSE OF SMELL WOULD
HAVE BEEN A GREAT WAY TO
DETERMINE SPREAD OF THE DISEASE.
SO FROM THE DATA IN THE GCCPR WE
SINGLED OUT DATA IN FRANCE WHERE
THERE WAS A GOVERNMENTAL INDEX,
THAT WAS ALLOWED TO -- THAT
ALLOWED TO PREDICT WHETHER ICU
SPECIFIC DEPARTMENTS AND REGIONS
WERE BECOMING OVERWHELMED DUE TO
COVID-19 INFECTION. AND OF
COURSE YOU CAN SEE FROM THE
FIRST GRAPH IN THE MAP OF FRANCE
THE GREEN DEPARTMENTS WERE THE
DEPARTMENTS WHERE COVID-19 WAS
UNDER CONTROL AND THERE WERE NO
ICU CELT WITH THE PATIENT LEVEL
AND THE RED WERE THE ONES THAT
WERE OVERWHELMED. IF WE START
LOOK AT THE NUMBER OF PEOPLE
THAT REPORT CHANGES IN SURVEY WE
CAN SEE CORRELATION OF .85%
INDICATING THAT THE PEOPLE
RESPONDING TO OUR SURVEY HAVING
SMELL AN TASTE WERE IN AREAS
LIKELY IN THE I C,Ds WHEN WE
START MAPPING THE TEMPORAL
DIMENSION OF THE SMELL AND TEST
CHANGES WE WERE ABLE TO PRE-DATE
BY TEN DAYS THE ICU OVERWHELMED
THE GOVERNMENT WAS ONLY ABLE TO
GIVE -- SO IF WE HAVE A SYSTEM
WICK WE CAN TRAIK SMELL AND
TASTE WE MAY ABLE TO MAKE AN
EVEN BETTER PUBLIC HEALTH
DECISIODECISION. THIS IS NOT TD
OF THE STORY. THE SELF-REPORTS
CAN BE HELPFUL WHEN USED IN A
CERTAIN CONTEXT, CAN PROVIDE
HELPFUL INFORMATION BUT THEY
DON'T PROVIDE THE BEST LEVEL OF
EVIDENCE. IF WE CONSIDER THE
PEOPLE A THAT HAVE COVID-19 AND
COMPARE THOSE THAT HAVE
SELF-REPORTED SMELL LOSS VERSUS
THOSE TESTED WITH PHYSICAL
TESTS, WE CAN SEE THAT WE ARE
UNDERESTIMATING THE PREVALENCE
OF SMELL LOSS BY 27%. SO WE
NEED A TAX TO MAKE SURE WE ARE
NOT LEAVING A QUARTER OF PEOPLE
ON THE TABLE AND NOT ADDRESSING
THEIR LOSS. A THIS IS
PARTICULARLY TRUE FOR KIDS, AND
INCUMBENT I WAS REALLY SHOCKED
TO LOOK AT THE MIXTURE AND SEE
THE BEST EVIDENCE WE HAVE FOR
CHILDREN WHEN IT COMES TO ASKING
ABOUT THEIR OWN SENSORY
PERCEPTION IS ASKING THEIR
PARENTS. YOU CAN ASK EVERYONE
ELSE WHO REPORTS FOR YOU WHAT
YOUR EXPERIENCE IS, PRETTY SURE
TO COME UP WITH RESULTS THAT ARE
NOT PARTICULARLY ACCURATE. ONLY
TWO STUDIES OVER THE COURSE OF
THIS INCLUDING OMICRON AND UNTIL
A COUPLE OF WEEKS THAT HAVE
PSYCHOPHYSICAL STATUS IN KIDS SO
WE DON'T KNOW IF IN PANDEMIC THE
SMELL LOSS WAS PRIMARY SYMPTOMS
WE DONE KNOW WHAT OUR KIDS ARE
EXPERIENCING AND THEIR
LIVELIHOOD AND FUTURE LIVELIHOOD
WILL BE IMPACTED. WE HAVE DO
HAVE SMELL TESTS AND WE HAVE
STANDARDIZED SMELL TESTS THAT
HAVE BEEN USED FOR RESEARCH
PURPOSES FOR MANY, MANY YEARS.
THESE TOOLS WERE NOT
PARTICULARLY HELPFUL DURING THE
PANDEMIC SO ON THE LAST WE HAVE
THE SMELL IDENTIFICATION TEST
AND UPDATES, ONE OF THE GOLD
STANDARD BUT IT IS A BOOKLET AND
IT HAS 40 ORDER AND REQUIRES A
-- TO COIN TO SCRATCH AND
RELEASE THE ODOR. IMAGINE USING
THE ENTRANCE OF THE BUILDING IT
WOULD TAKE THREE DAYS FOR PEOPLE
TO GET IN. NOT HELPFUL. SNIFF --
GREAT SUBSTANCE GREAT TEST YOU
HAVE THREE SUBTESTS AND YOU CAN
MEASURE SENSITIVITY,
DISCRIMINATION, IDENTIFICATION,
TAKE 45 MINUTES AND YOU HAVE TO
USE THE SAME PEN UNDER MULTIPLE
PEOPLE, NOT IDEAL IN A PANDEMIC.
SO WE HAVE THE NIH OLFACTORY
TOOLBOX MUCH BETTER TO MINE
ODORS BUT LITTLE TOO LONG FOR
THE EXPERIENCE. INSTEAD OF COST,
NUMBER OF ODORS, WHAT WE ARE
MEASURING AND HOW MUCH TIME IT
TAKES, WOULD SEE THE MAJORITY OF
THIS TEST TO FOCUS ON ONE
OLFACTORY FUNCTION ONLY, ODOR
IDENTIFICATION. WHICH IS A GREAT
FUNCTION BUT IT MAY NOT TELL THE
WHOLE STORY ABOUT WHY WE HAVE A
SENSE OF SMELL IN THE FIRST
PLACE. WE ARE NOT TO GO AROUND
AND NAME ODOR OBJECTS
NECESSARILY. YET OLFACTION AS
PATIENT TELL US PROVIDES A LOT
OF INFORMATION THAT MAKES OUR
LIVES -- WE HAVE THE REGULAR APP
COSTS APPROXIMATELY $30 SO
IMAGINE APPLYING THIS COST TO A
POPULATION, THE VALENCE PIPELINE
UPWARD WOULD BE EXTREMELY
EXPENSIVE. SO WHILE WE DO HAVE
TOOLS, THOSE TOOLS DUE TO COST
THE DURATION OF THE TOOLS THAT
TRAINING REQUIREMENTS OF THE
PEOPLE ADMINISTERING THE TOOLS,
ARE NOT REALLY AN OPTION WHEN IT
COMES TO HAVING POPULATION
SURVEY SCREEN OF SMELL FUNCTION.
THIS IS WHAT THE AWARD THAT CAME
IN. -AWARD PROPOSED TO DEVELOP
AND INNOVATE CREATE NEW TASKS
SPECIFICALLY TO CHEMOSENSORY
ISSUES WITHIN COVID-19 AND
PRODUCES FOUR SOLUTIONS, AND IN
IS ONE OF THE EXAMPLE OF IN OUR
SMALL WORLD, ATTEMPT OF DATA
STANDARDS THAT ARE REQUIRED TO
REPORT LIKE DATA IN THE SAME WAY
AS AN OLD SCHOOL AD OF DIFFERENT
TESTS THAT EACH OF O OUR GROUPS
PRESENTED. SO TO GIVE YOU AN
IDEA OF THE TYPE OF INNOVATIONS
THAT WE -- THAT WAS INTRODUCED
THROUGH THIS AWARD, WE HAVE THE
AROMA T AND THIS IS A TEST, THE
FIRST RAPID TEST FOR DETECTION
OF SMELL FUNCTION. IT IS A CARD
THAT IS KIND OF LIKE A LARGE
NOTEBOOK, YOU HAVE 16 WITH
DIFFERENT CONCENTRATIONS IN THIS
CASE CEA. BASED ON RESPONSES OF
PARTICULAR THIS IS ADAPTIVE
VISION ALGORITHM THAT ALLOWS TO
DETERMINE WHICH IS THE MAXIMUM
YOU HAVE TO SMELL. THE AUTHORS
DR. HAYES AND (INAUDIBLE) WERE
ABLE TO DETERMINE WHAT THIS TEST
THAT WOMEN TENDED TO HAVE HIGHER
DECEPTION THRESHOLD THAN MEN AND
YOUNGER PEOPLE HAVE YOUNGER
SENSE OF SMELL SENSITIVITY
COMPARED TO OLDER PEOPLE WHICH
WAS A GOOD -- TO SEE THIS TOOL
REPRODUCED WHAT WE KNEW TO BE
TRUE. SECONDS IS AROMA TEST.
THIS HAS CARD WITH THREE ODORS,
(INAUDIBLE) DISCRIMINATION AND
PEOPLE CAN RESPOND TO THOSE
QUESTIONS BUT SMELLING THE CARD
AND RESPONDING ON ELECTRONIC
INTERFACE. INTERESTINGLY THIS
IS THE ONLY RAPID TEST THAT
LOOKS AT DISCRIMINATION AND
SMALL SAMPLE OF PATIENTS WITH
COVID-19 AND PATIENTS THAT HAVE
RESPIRATORY DISORDER BUT NOT
COVID-19. THE TEST WITH A FEW
TRIALS EVEN ONE TRIAL WAS
SIGNIFICANTLY DISCRIMINATED
BETWEEN THE TWO GROUPS SO PEOPLE
WITH COVID HAVE LOWER
DISCRIMINATION OF THE
(INAUDIBLE) THAT DON'T HAVE
COVID-19. ONE OF MY FAVORITE
EXPERIMENT EVEN WE COULD DO IN
OUR OWN HOUSE, NOT AS CONTROL AS
THIS TEAM PUT TOGETHER BUT THIS
IS THE HARD CANDY TEST. SO THESE
TEAMS CREATED SOME HA HARD CANDY
WITH DIFFERENT POLICE OFFICER
FLAVORS AND ASKED THEM TO SMELL
FROM NOSTRILS AND THEN PUT INTO
THEIR MOUTH AND WHAT WAS THE
NASAL EXPERIENCE SO MEASURING
SMELL FUNCTION FROM TWO
PATHWAYS. WHAT YOU SEE IN THE
GRAPH HERE IS THAT BY USING THIS
GAUSSIAN PROGRESS REGRESSION
THEY WERE ABLE TO SUGGEST THE
REASON MARCH TO DIP IN THE
RATINGINGS AROUND THE TIM OF
DIAGNOSIS WITH COVID-19 SHOWING
THAT EVEN RENAL FACTION IS
IMPAIRED WITH COVID. LAST BUT
NOT LEAST I WILL TALK ABOUT THE
TEST MY GROUP AND DR. PAMELA
DALTON AND OTHERS DEVELOPED
CALLED SCENTINEL. I HAVE A
COUPLE OF EXAMPLES, CURIOUS TO
SEE HOW IT WORKS. GOING TO HAVE
IT IN YOUR HANDS SHORTLY IF YOU
WANT. THIS IS A SIMPLE TEST,
THERE'S ONLY ONE ODO ODOR. THE ,
THE POSSIBLE ODORS ARE
(INAUDIBLE). YOU HAVE 27
VERSIONS OF THE TEST BY
INTERSECTING THE POSITION ODOR
AND TYPE OF DOOR. SO YOU CAN
TEST THEM FOR A MONTH BUT
WITHOUT USING THE SAME EXACT
TEST. WE HAVE THREE QUESTIONS
SO AGAIN THIS IS A
MULTI-FUNCTION TEST SO WE ASK
PEOPLE WHERE IS THE ODOR, HOW
STRONG IS THE ODOR, AND WHAT IS
THE ODOR AND FOUR OPTIONS FOR
THE USUAL TEST. L WHAT WE LEARN
BY ASKING THE THREE SIMPLE
QUESTIONS THIS IS AS GOOD AS ONE
OF THE GOLD STANDARDS THAT HAVE
BEEN USED IN THE PAST WHICH IS
THE NIH ODOR IDENTIFICATION
TOOLBOX. THAT TAKES A FOUR TIMES
THE TIME TO REACH THE SAME
CONCLUSION. HERE IN PARTICULAR
WHAT YOU SEE IS THAT THIS TEST
IS 95% ACCURACY IN THE
DISCRIMINATING PEOPLE THAT ARE
(INAUDIBLE) SO THEY HAVE
COMPLETE SMELL LOSS VERSUS
PEOPLE THAT ARE NORMAL. WE
TESTED PEOPLE THAT WE SEND THEM
VIA MAIL AND AFFORDABLE AND
PORTABLE AND EASY TO USE. LATER
IN THE PANDEMIC WE REALIZED THE
QUESTIONS ARE NOT ENOUGH TO MAP
ALL THE DISORDERS OLFACTORY
DISORDERS EMERGING OUTS OF THE
PANDEMIC, IN PARTICULAR PARASMIA
IS A DISORDER IS DISORDER LESS
OUT. IN THE TEST COMMERCIALLY
AVAILABLE TEST I PRESENTED YOU
THERE IS NO TEST FOR PAROSNIA.
SHOW YOU NEED (INAUDIBLE) TODAY.
HOW PLEASANT IS THE ODOR,
IMAGINE THE ODOR OF VOMIT AND
HOW UNPLEASANT IT IS. IS ABLE
TO DISCRIMINATE PEOPLE TEND NOT
TO LIKE VOMIT. I WILL SHOW YOU
DATA ABOUT THAT. IF YOU DON'T
TRUST ME. YEAH. FUNNY TO TRACKS
ARE IMPORTANT. WE WEREN'T ABLE
TO PRODUCE RESULTS IN THE
PREVIOUS STUDY COMPLETELY
DIFFERENT SAMPLE, WE WERE ABLE
TO THIS TIME HAVE 94% ACCURACY
IN DISCRIMINATING PEOPLE WITH
PAROSMIA. PEOPLE DON'T LIKE
VOMIT AS YOU CAN SEE FROM THE
BOTTOM, THE RATE VOMIT VERY NOT
PLEASANT. PEOPLE WITH PAROSMIA
HAVE A GENERAL DECREASE IN
HEDONIC RATINGS FOR ALL DOORS.
WE INCLUDED A COFFEE ODOR WHICH
IS A KNOWN TRIGGER BUT LEARNED
LATER ON WE DIDN'T INCLUDE IN
THAT COST TO MAKE SURE SOME
TRIGGERS CHEMICALLY IDENTIFIED
LAYERS SO WE ARE NOW TRYING TO
SEE IF WE CAN HAVE A BETTER TO
DISCRIMINATE PEOPLE WITH
PAROSMIA. THIS IS THE HEDONIC
SCORE AND THIS IS THE PAROSNIA
FREQUENCY. THE MORE FREQUENT OR
SEVERE THE LOWER THE HEDONIC
SCORE. SO WE CAN TRACK OVER TIME
WHAT HAPPENS TO A PERSON IN
TERMS OF HEDONIC RATINGS WITH
THE ODORS. SO REALLY WHAT WE GOT
THE AWARD FOR WAS TO DETERMINE
WHETHER WE CAN ACTUALLY DETECT
COVID-19 JUST BASED ON SMELL
TEST. SO WE PARTNERED WITH
W,XLER SCHOOL OF MEDICINE AND
GAVE SENTINEL TESTS, PEOPLE THAT
WERE TAKING THE TEST THAT WERE
SCHEDULED FOR TRAVEL OR FOR
MEDICAL PROCEDURESES. SO WE WERE
ABLE TO TEST THAT OUT TO 3,000
PARTICIPANTS WITH THIS METHOD.
BUT JUST WITH BECAUSE OF COURSE
WE LEARN TO HAVE THEM DURING
COVID THE PREVALENCE OF SMELL
LOSS HAS CHANGED FROM VARIANT TO
VARIANT. SO WE DO KNOW THAT IN
OMICRON IT IS LOWER AS COMPARED
TO ALPHA AND DELTA. TO GIVE YOU
A REFERENCE, IT IS 70% OF PEOPLE
WITH DELTA EXPERIENCED SMELL
LOSS WITH FOR TWO WEEKS OR SO.
BUT IN OMICRON DOWN TO 30% AND
NOW IT'S A LITTLE BIT LOWER.
HERE THE GRAPH WHICH IS A LITTLE
COMPLICATED, HERE WE HAVE
BIWEEKLY RATE ON THE Y AXIS
FIRST -- SARS COV-2 POSITIVE
CASES SEPTEMBERNAL TAILS BECAUSE
THE IDEA IS IT IS A FUNCTIONAL
THE TAX IS NOW LOST THIS MAYBE A
SOURCE CODE FOR POSITIVEST THE.
WE ARE EXTRACTING THIS PATTERN
OVERESTIMATING HOW MANY PEOPLE
HAVE COVID, ALPHA AND DELTA BUT
WE START LOSING THAT TREND
COMPLETELY DURING OMICRON WHICH
IS THE PURPLE AREA. SO AS YOU
CAN SEE FROM THIS GRAPH WE ARE
VERY GOOD AT TELLING PEOPLE WITH
THIS TEST WE WHO DOES NOT HAVE
COVID BUT NOT GOOD SAYING WHO
HAS COVID BY LOOKING AT THE
SMELL TEST. WHAT WE ARE LEARNING
IS THAT OF ALL THE TASK
INTENSITY DETECTION DISCRIMINATE
IN IDENTIFICATION HEDONICS WHAT
MAKES THE DIFFERENCE IS THE ODOR
INTENSITY ASKING PEOPLE
SUBJECTIVE EXPERIENCE WHICH IS
USUALLY DISCARDED AS A METRIC
WAS PARTICULARLY HELPFUL IN
DISCRIMINATING COVID-19 POSITIVE
PEOPLE FROM COVID-19 NEGATIVE. I
WANT TO PRESENT NOW SERIES OF
EVIDENCE THAT GO BEYOND COVID-19
AND SHOW YOU I WANT TO HAVE
MONITORING OF SMELL TESTING THAT
IS NOT ONLY FOR DISEASE LIKE
COVID-19. WE BELIEVE AND I
BELIEVE FROM THE DATA THAT SMELL
AND TASTE ALSO ARE IGNORED
(INAUDIBLE) AND WHAT WE SEE IS
THAT SMELL LOSS IS ONE OF THE
STRONGEST PREDICTORS OF FIVE
YEAR AND TEN YEAR MORTALITY.
THESE ARE DATABASE ON NATIONAL
SURVEYS AND STUDIES THAT ARE
WELL REPRESENTED OF THE
POPULATION. THIS IS -- THE
REASON ENOUGH THE START
MONITORING LARGE SCALE SMELL AND
TASTE. THEN WE LOOK AT THE DATA
FROM THE N HAYNES HAPPEN WHAT
HAPPENED. NOT SURE WHAT
HAPPENED HERE BUT WE ARE BACK.
OKAY. LET ME SHARE AGAIN SO 20%
OF THE ADULTS WITH SMELL AND
TASTE DISORDERS DISCUSS THEIR
PROBLEM WITH A PROVIDER. START
THINKING THERE'S MILLIONS OF
PEOPLE WITH SMELL AND TASTE LOSS
THAT IS NOT THE BEST NUMBER WE
CAN HAVE HONESTLY. IF WE LOOK AT
WHAT WE COULD PREDICT BY LOOKING
-- BY INCORPORATING SMELL
EVALUATION IN MENTAL HEALTH
PERFORMANCE WE KNOW PEOPLE ARE
DEPRESSED OR ANXIOUS HAVE LOWER
OLFACTORY ABILITY, PEOPLE WITH
LOW OLFACTORY HAVE HIGHER RATES
OF DEPRESSION AND ANXIETY.
NUTRITIONAL AND METABOLIC HEALTH
IF WE LOSE OUR SENSE OF SMELL
THAT CHANGES 80% OF OUR
EXPERIENCE WITH FOOD. PRETTY
SIGNIFICANT. SO WE WILL START
EATING DIFFERENTLY. WE KNOW
PEOPLE WITH SMELL LOSS CONSUME
NOR SALT. TRYING TO COMPENSATE
FOR THE LACK OF FLAVOR THAT THEY
ARE EXPERIENCING. WE KNOW THAT
THAT IS NOT THE BEST PRACTICE WE
CAN HAVE. WHEN IT COMES TO BRAIN
HEALTH ALL THE MAJOR DISORDERS
ARE ALZHEIMERS MULTIPLE
SCLEROSIS, EPILEPSY, THEY ALL
HAVE SMELL LOSS AS EARLY SYMPTOM
OR AS A SYMPTOM AMONG THEM. THAT
IS NOT THE U PRIMARY ONE EVEN IN
CERTAIN CASES LIKE PARKINSON
THIS IS THE SYMPTOM THAT WE USE
FOR DIFFERENTIAL DIAGNOSIS.
BEFORE COVID 1 IN 8 EXPERIENCED
(INAUDIBLE) THIS DATA IS BASED
ON THE POPULATION. WE DIDN'T
HAVE A GOOD UNDERSTANDING OF
WHAT HAPPENS BELOW THAT AGE
RANGE, DEFINITELY NOT IN KIDS
LIKE I SAID BEFORE. COVID
PRODUCED 50 MILLION, PERHAPS
MORE OF PEOPLE THAT HAVE
EXPERIENCED A CERTAIN POINT IN
TIME SMELL LOSS AND 5 OR 10% OF
THAT STILL HAS THAT LOSS. WE NOW
DIRECT THEM WHEN IT COMES TO
HEALTHCARE WHICH TYPE OF SUPPORT
THEY CAN HAVE. IT IS TRUE AS
THIS IS ONE OF THE PROBLEMS THAT
IS OFTEN RAISED AS WELL, WE
DON'T HAVE TIME TO LOOK AT SMELL
AN TASTE JUST BECAUSE WE DON'T
HAVE A CURE YET. BUT I'M -- I
WOULD ARGUE WE WANT TO MONITOR,
WE DO KNOW THIS IS AN IMPORTANT
SYMPTOM AND WE WANT TO MAKE SURE
WE HAVE THIS INFORMATION
AVAILABLE FOR WHEN A CURE IS
AVAILABLE. SO WE WERE PLEASED TO
MOW THE STRATEGIC PLAN OF NIDCD
WANTS US TO IMAGINE A FUTURE
WHERE YOU USE SMELL TESTING IN
HEALTHCARE HEALTHCARE TO START
MONITORING DEMENTIA OR
NEURODEGENERATIVE DISEASE FOR
INSTANCE P AND WE ARE COMMITTED
TO CHAINS THIS NUMBER AND HELP
THE PEOPLE GOALS TO 26.2% WHERE
WE WANT MORE PEOPLE TO TALK TO
THEIR PROVIDERS ABOUT SMELL AND
TASTE SO WE WANT PROVIDERS THAT
DO KNOW WHAT TO RESPOND AND
WELCOME THEIR PATIENTS TALKING
ABOUT SMELL AND TASTE. WE KNOW
TALKING ABOUT IT IS NOT ENOUGH.
THIS SHOWS DATA FOR MORE THAN A
THOUSAND PEOPLE ACROSS 22
COUNTRIES BUT IF I SELECTED THE
U.S. OUT OF THIS GRAPH IT WILL
LOOK THE SAME. THE BARS INDICATE
IF PEOPLE WHICH SENSE WOULD THEY
GIVE UP IF THEY HAVE TO CHOOSE
ONE OF THEIR SENSES. 62% CHOOSE
TO GIVE UP THEIR SENSE OF SMELL.
OVER THE SENSE OF TASTE HEARING
AND VISION AND ALSO TOUCH
BECAUSE WE JUST REPLICATED THIS
DATA. SO THERE IS A FUNDAMENTAL
MISUNDERSTANDING OF WHAT THE
SENSE OF SMELL CONTRIBUTE TO OUR
LIVES. SO I STARTED THINKING
ABOUT SENSE OF SMELL MEASURING
THE SENSE OF SMELL LIKE BLOOD
PRESSURE MEASUREMENT. 'S AN GETS
AT EVERY WELLNESS VISIT. IT CAN
TALK ABOUT SPECIFICALLY ABOUT
ONE DISEASE HYPERTENSION BUT
ALSO PROVIDE LIKE A GENERAL
CONCEPT FOR SEVERAL PEOPLE,
REGULATION ABOUT OTHER SYSTEMS.
WE SHOULD START SWITCHING THE
THINKING ABOUT SMELL TESTING IN
THAT DIRECTION. ONE OF THE
PIECES OF THE PUZZLE, IT IS NOT
THE MAIN ONE NECESSARILY. WE
CAN HAVE SCREENING TEST THAT
TELL THE FULL STORY ABOUT THE
FUNCTIONALITY OF A PERSON BUT
PROVIDE DATA POINT SCREENING
POINT. IT IS QUICK, CHEAP,
REQUIRES LIMITED TRAINING TO
ADMINISTER BUT IT CAN REALLY
COVER THE WHOLE POPULATION. WE
WANT TO DO SO BECAUSE PATIENTS
ARE ASKING US TO (INAUDIBLE) SO
THE NORTH AMERICA ISSUES A
PETITION TO SUPPORT IDEA OF
MAKING SMELL AND TASTE TESTING
UNIVERSAL. THEY WANT TO HAVE
THEIR EXPERIENCE SENSORY
EXPERIENCE VALIDATED, THEY WANT
TO RECEIVE NUTRITIONAL AND
PSYCHOLOGICAL COUNSELING AND
THEY WANT TO START AMASSING DATA
TO SHAPE PERSON OR PERSONS WITH
SMELL LOSS AND HOW TO
PARTICIPATE IN THE RESEARCH
EFFORTS TO IDENTIFY A CURE.
HEARING THIS VERY APPRECIATIVE
OF THE SUPPORT WE WILL HAVE A
CONFERENCE IN NOVEMBER, NOVEMBER
5 THROUGH 7 THAT IS CALLED THE
(INAUDIBLE) TESTING -- TOWARDS
UNIVERSAL CHEMO SENSORY TESTING
WHERE WE HAVE CLIENTS PAYER, ALL
TOGETHER TO FIGURE OUT OUT A
ROAD MAP TO FIGURE OUT SMELL AND
TASTE TESTING A UNIVERSAL
EXPERIENCE FOR ALL. I HOPE I
CONVINCED YOU COVID EXPOSED GAPS
IN PREPAREDNESS FOR MEDICAL
CARE, DON'T HAVE SMELL TESTS TO
BE SAFE. I SHOWED YOU OPTIONS
FOR INNOVATIONS ABOUT SMELL
TESTING THAT COULD CHANGE THIS
TASK AND I REALLY HOPE DATA THAT
WE CURRENTLY HAVE LOBO ALSO DATA
WE COULD COLLECT BEFORE
MONITORING POPULATION LEVEL
SMELL FUNCTION COULD HELP US IN
VARIOUS AREAS OF HEALTHCARE.
WITH THIS, I ACKNOWLEDGE MY
COLLABORATORS AND THANK YOU FOR
YOUR ATTENTION.
[APPLAUSE]
>>THANK YOU SO MUCH. FABULOUS.
>>YOU HAVE A QUESTION?
>>THERE IS A LOT OF PEOPLE THAT
WANT TO COMMENT ON IT. I
THOUGHT THIS WAS SUCH A NICE
TALK AND IN RETROSPECT GOING
BACK FOR YEARS OF COURSE IT IS
THE OBVIOUS THING TO DO IS TO
GET SMELL TESTING AS ROUTINE AS
POSSIBLE BUT IT WASN'T CLEAR,
REALLY SO IMPRESSIVE TO SEE
GROUPS THAT CAN PUT TOGETHER SO
QUICKLY.
>>THANK YOU.
>>JOSH, YOU CAN STAND AT THE
TABLE AND GET A MICROPHONE.
>>COULD I (INAUDIBLE)?
>>SURE. YEAH.
>>SO WITH THE DIFFERENT
VARIANTS VALENTINA, ARE THERE
OTHER QUALITIES OF CHANGES THAT
BECOME APPARENT? I KNOW THE
BOTTOM LINE YOU SEE IT THE SMELL
LOSS FREQUENTLY BUT PERHAPS THE
QUANTITATIVE ASPECT FOR PAROSNIA
DIFFERENT FOR ANY OTHER
DIFFERENCES?
>>IT DOESN'T SEEM AT LEAST FROM
THE DATA WE HAVE RIGHT NOW THAT
THAT'S THE CASE. MY ARGUMENT IS
THAT I DON'T THINK WE ARE
MONITORING ENOUGH TO DETECT THE
DIFFERENCES. SO WE GO BACK TO
SQUARE ONE. WHEN WE TALK ABOUT
PREVALENCE FOR SMELL DISORDERS
WE TALK ABOUT PREVALENCE
COLLECTED A CERTAIN HOSPITAL
GENERALLY SPEAKING OR NATIONAL
-- THE BEST DATA WE HAVE IS THE
N HAYNES DATA FROM 2013 AND 14.
AND WE DON'T HAVE SMELL AND
TASTE TESTING ADDED TO SEE WHAT
THE DIFFERENCE HAS BEEN IN N
HAYNES. AT LEAST NOT YET. SO I
JUST THINK THAT WE HAVE A
LIMITED POWER OF EVALUATING WHAT
REALLY IS IN FACT SMELL LOSS OR
SMELL DYSFUNCTION IN GENERAL BUT
TO TWO BACK TO YOUR QUESTION WE
DON'T SEE OMICRON CHANGING THE
RATE OF PEROSMIA OR SEEMS LIKE
SMELL LOSS IS LESS FREQUENT.
>>THANK YOU. THIS IS SOMETHING
THAT IS NEAR AND DEAR TO MY
HEART
>>COME CLOSER.
>>GOING TO GET THIS RIGHT.
HIGHLIGHTED COVID BROUGHT THE
WORLD ATTENTION TO OUR FIELD AND
I THINK AS YOU SHOW THIS IS
UNDERVALUED FOR MANY REASONS.
NOW THAT WE HAVE A LITTLE BIT OF
MOMENTUM CERTAINLY ATTENTION OF
THE THE WORLD WHAT BARRIERS DO
YOU SEE, WHAT CHALLENGES DO WE
FACE HELPING TO IMPACT CARE?
>>I REALLY THINK PEOPLE DON'T
LIKE WHEN I SAY THIS BUT I STILL
THINK WE ARE AT THE AWARENESS
LEVEL. I SHOW THAT DATA ABOUT
WHICH SOME PEOPLE WOULD GIVE UP
AND WE HAVE DATA PRE-PANDEMIC AT
THE VERY BEGINNING OF THE
PANDEMIC AND A COUPLE OF YEARS
LATER. WE ONLY RAISE WARENESS BY
3%. SO THE AWARENESS WAS EXTR
EXTREMELY HIGH BETWEEN MARCH
2020 AND PERHAPS MARCH 2021.
PEOPLE STARTED KNOWING THAT
SMELL LOSS WOULD BE A PROBLEM
BUT IT CAN BE A PROBLEM RELATED
TO COVID SO I THINK WE HAVE A
VERY FOCAL AWARENESS. THE WAY
THAT THIS WORKS THE WAY THE
INFORMATION IS PROCESSED IN THE
BRAIN, THE WAY SOCIALLY WE TALK
ABOUT THE SENSE OF SMELL WHICH
IS VERY LITTLE, DOES NOT ALLOW
US TO BE ABLE TO RELY ONLY ON
THE SELF-REPORT. THAT IS WHY I
THINK THE WAY FORWARD IS REALLY
HAVING A METRIC THAT CAN
HIGHLIGHT THOSE CHANGES FOR NOSE
NOT ABLE TO -- THOSE NOT ABLE TO
DETECT IT THEMSELVES AND CREATE
HISTORICAL AND LONGITUDINAL
CHANGES FOR PEOPLE SO THAT DATA
IS THERE LIKE PROVIDER CAN LOOK
TEN YEARS PRIOR WHAT WAS
HAPPENING. THIS IS NOT UNCOMMON.
THIS RETROSPECTIVELY FOR
PARKINSON'S VERY OFTEN. I GUESS
DIAGNOSE WITH PARKINSON AND TEN
YEARS PRIOR HAVING ISSUE WITH
SENSE OF SMELL. IT WOULD HAVE
BEEN NICE TO START KEEPING AN
EYE ON THINGS. THE MORE
THERAPEUTIC OPTIONS WILL BECOME
AVAILABLE WHERE WE CAN REALLY DO
SOMETHING IN THAT PERIOD OF
PROBLEM EARLY DIAGNOSIS I THINK
PEOPLE WILL START TO TUNE IN
MORE AND MORE. I WOULD LIKE FOR
US TO BE (INAUDIBLE) AND HAVE
ABILITY TO MEASURE SMELL. WE
DON'T NEED TO HAVE HALF HOUR
TYPE OF TESTING WITH JUST COUPLE
OF MINUTES, SENTINEL TASTE TWO
MINUTE IT IS FIRST TIME YOU SIGH
IT AND 40 SECONDS ON REPEAT AND
YOU CAN PLEAT AND
SELF-ADMINISTER SO NOT EVEN TAX
THE KIND OF PEOPLE HAVING TO
VISIT. I'M TALKING SENTINEL
BECAUSE IT IS BEST AROMA AND
AROMATASE WOULD PROVIDE SPECIFIC
INFORMATION THAT IS OUT. ALMOST
AS FAST (INAUDIBLE). SO
AWARENESS IS OUR STEP ONE.
>>THAT IS A BEAUTIFUL TALK. .
THE QUESTION I HAD IS HAVE YOU
OR OTHER INVESTIGATORS LOOK AT
INTERACTIONS BETWEEN COVID PER
SE AND HOW THAT HAPPENED AT THAT
TIME, AUTOIMMUNE DISORDERS OR
THINGS LIKE THAT?
>>NOT THERE YET WITH OLFACTION
AS A DRIVER OF THAT
INVESTIGATION BUT I ABSOLUTELY
TAKE YOUR POINT. WE DO KNOW
SMELL LOSS IS MANY, MANY
DIFFERENT DISORDERS AND I THINK
MY ANGLE TO THIS IS AGAIN LET'S
CREATE A DATABASE WHERE WE HAVE
OLFACTORY MEASURES EVEN AT THE
(INAUDIBLE) LEVEL MATCH IT WITH
ELECTRONIC MEDICAL RECORDS AND
THEN WE CAN SEE WHAT IS IMPACT
AND ABILITY OF SMELL LOSS TO
PREDICT AND HOW EARLY THIS --
WIDE RANGE (INAUDIBLE). THERE IS
WORK TO DO. WE HAVE THE ENERGY
TO DO IT. WE THINK DATABASE IS
AT LEAST IN OUR GROUP WE THINK
DATABASES ARE A WAY TO START
DOING THAT, CRITICAL MASS
INFORMATION.
>>YOU THINK THAT NEED TO LOOK
(INAUDIBLE) ALSO INFORM YOU HOW
(INAUDIBLE) THE ENCODING SMELLS,
IS THERE OTHER SMELLS EASIER TO
LOCALIZE?
>>MANY TRIED TO IDENTIFY WHAT
IS THE SMELL THAT HELPS DETECT
ALZHEIMER'S PARKINSON OR WHAT
NOT. IT DOESN'T SEEM WE ARE ABLE
TO FIND SMELLS AT THAT LEVEL
HONESTLY. SO IT IS MORE LIKE A
GLOBAL ABILITY TO PERCEIVE ODOR,
THE SENSE OF SMELL IS EXTREMELY
COMPLICATED. WE SEE MILLIONS OF
COLLEAGUES WITH RECEPTORS, WE
HAVE 400 PER SMELL, WE HAVE
SPECIFIC ANOSMIA, THE
DIMENSIONALITY OF OLFACTORY
SPACE IS LARGER THAN THE VISUAL
SPACE. ON TOP OF THAT WE ARE
NOT ABLE TO MAP AT THIS POINT
THE DESCRIPTORS TO THE CHEMICAL
STRUCTURE TO THE ODOR. THERE IS
SOME BREAK THROUGH VERY RECENT
WHERE WE START TO CONNECT FOR
SINGLE ODORS AND NOT ODOR
MIXTURES WHICH IS MOSTLY WHAT WE
ARE SMELLING IN OUR DAILY LIFE.
WITH (INAUDIBLE) CHEMICAL. THE
HIGH DIMENSIONALITY PROBLEM AT
THIS POINT. SO WE DON'T HAVE ONE
SPECIFIC ODOR THAT PREDICTS
THIS. BUT WE HAVE USED CERTAIN
VERY SIMILAR ODORS AS SHORT CUTS
TO HELP PEOPLE MONITORING THE
SENSE OF SMELL SO THE PEANUT
BUTTER TEST IS A FAMOUS ONE TO
START SEEING SOMEBODY LOSES
THEIR SENSE OF SMELL, REACH FOR
YOUR SPICE CABINET OR SMELL YOUR
PEANUT BUTTER. ORIGINALLY THAT
WAS ONE OF THE CONTEXT OF
ALZHEIMER'S DISEASE BUT CAN BE
APPLIED TO COVID AND MANY OTHER
THINGS.
>>CATHERINE BOUTON HAS HER HAND
UP. THINK SHE WANT TO ASK A
QUESTION.
>>THE 23% WHO DID REPORT SMELL
LOSS TO MEDICAL PROFESSIONAL,
WHAT KIND OF RESPONSE DID THEY
GET? MY FIELD IS HEARING LOSS
AND I KNOW THAT DOCTORS TEND TO
JUST IGNORE PRIMARY CARE DOCTORS
THEN TO SCREEN FOR THE MOST
PART. IS THIS LIKELY TO FALL
INTO THE SAME CATEGORY OR HOW
ARE YOU GOING ABOUT EDUCATING
CLINICIANS THE IMPORTANCE OF
THIS?
>>THANK YOU FOR THE QUESTION
BECAUSE YOU ARE HITTING A VERY
IMPORTANT POINT. WE NOT ONLY
HAVE DATA FROM 6,000 PATIENTS
AND CAREGIVERS, FROM THE
COLLECTED WITH JEFFERSON AND THE
SMELL AND TASTE ASSOCIATION OF
NORTH AMERICA, WHAT WE SO E
MAJORITY OF PATIENTS AND
CAREGIVERS LIKE MEAT PROVIDERS,
THEY HEAR SENTENCES NOTHING TO
DO ABOUT IT, TO THINK ABOUT IT
IS OKAY. WE USUALLY LOOK AT THE
HEARING COMMUNITY AS AN EXAMPLE
OF WHAT THE OLFACTORY COMMUNITY
WOULD LIKE TO REACH FOR THE
PATIENT SO HEARING FROM YOU THAT
IS ALSO A PROBLEM IN THE HEARING
COMMUNITY IS KEEPS OUR HOPES A
LITTLE BIT LOW AT THE MOMENT BUT
MAJORITY OF PRIMARY HEALTHCARE
PROVIDERS ARE NOT TRAINED IN
DETECTING AND TALKING ABOUT
SMELL AND TASTE. THINK ABOUT THE
AMOUNT OF PAGES THAT WE SEE IN A
BOOK. IN ANY SPECIALTY. ASIDE
ENTs. BUT USUALLY THERE IS A
CHAPTER IN NEUROSCIENCE YOU HAVE
TWO CHAPTERS ON VISION, ONE ON
OLFACTION. TOUCH MAYBE HALF THEN
TWO PAGES OF SMELL AN TASTE AT
THE END. NOT ANY MORE, THANK YOU
NUROPA. WE ARE TRYING TO CHANGE
THIS. BUT THIS IS THE REALITY OF
THE TRAINING SO FAR. SO AND THE
FACT WE DON'T HAVE A CURE REALLY
MAKES IT DIFFICULT TO ATTRACT
THE ATTENTION OF HEALTHCARE
PROVIDERS BECAUSE YOU DON'T WANT
TO RAISE A PROBLEM YOU DO NOT
HAVE SOLUTION TO TO. I COMPLETEY
UNDERSTAND THE POINT. WE DO HAVE
SOMETHING THAT WE CAN DO THAT
THE PATIENTS TELL US THEY
APPRECIATE SO THEY WANT TO
RECEIVE VALIDATION, THEY WANT TO
BE TOLD THEY ARE NOT CRAZY WHICH
IS SOMETHING THAT HAS HAPPENED.
SO THE BASIC VALIDATION OF THE
EXPERIENCE I THINK IS EXTREMELY
IMPORTANT. THEN YOU HAVE MENTAL
HEALTH SUPPORT. NUTRITIONAL
COUNSELING. THAT COULD IMPROVE
THE QUALITY OF LIFE OF THESE
PEOPLE, WITHOUT CHANGING THEIR
ABILITY TO SELL AT THIS POINT.
>>BUT ALSO IT IS A GOOD
DIAGNOSTIC TOOL FROM WHAT YOU
SAID EARLIER.
>>YES. DIAGNOSTIC FOR SMELL
LOSS, AT THIS POINT WE IMMEDIATE
MORE DATA TO MAKE IT DIAGNOSTICS
FOR MANY OTHER PATHOLOGISTS IN A
RELIABLE WAY. MY HOPE WOULD BE
LIKE IF WE HAD SMELL TESTING
INCLUDED IN A SERIES OF CLINICAL
TRIALS, WE COULD BE ABLE TO
IDENTIFY SUBGROUP OF PATIENTS
THAT MAY REQUIRE DIFFERENT TYPE
OF SUPPORT OR FOR WHOM CERTAIN
THERAPEUTIC AGENTS DON'T WORK.
IT IS JUST WE DON'T KNOW, WE ARE
NOT ABLE TO COLLECT DATA AT THAT
LEVEL. I THINK MY ARGUMENT IS
THAT IT IS LOW EFFORT AT THIS
POINT. WE HAVE THE TOOLS THAT
REQUIRE COUPLE OF MINUTES AND
THIS IS THE INFORMATION THAT
WHEN ACCUMULATED WILL ALLOW US
TO DETECT IN WHICH CASES YOU
WANT TO INVEST TIME IN LOOKING
AT OLFACTION. NUTRITION AND
MENTAL HEALTH ARE
NEURODEGENERATIVE DISORDERS ARE
PRETTY SOLID PLACES TO START
BASED ON THE EVIDENCE THAT WE
HAVE ALREADY.
>>BARBARA.
>>THANK YOU.
>>A QUICK COMMENT AND A
QUESTION. MY MOTHER IN THE
1980s AFTER A BAD COAL LOST
HER TASTE AND SMELL AND NEVER
REGAINED HER SMELL BUT HER TASTE
CAME BACK. IT REALLY AFFECTED
HER QUALITY OF LIFE AND SHE WAS
DISMISSED AND EVERYBODY DID SAY
SHE WAS CRAZY. THE PHYSICIAN
BASICALLY SAID LOOK YOU DON'T
HAVE CANCER, YOU DONE HAVE A
DISEASE. LIVE WIT. THAT OFTEN
HAPPENS WITH HEARING LOSS AS
WELL. A QUESTION. ANY
CORRELATION WITH PREGNANCY? WE
KNOW THAT YOU HAVE SMELL THINGS
DIFFERENTLY, AVERSIONS TOWARD
FOOD YOU TASTE DIFFERENTLY, ANY
RESEARCH WITH THAT?
>>THERE IS SOME RESEARCH AND
THERE IS A LOT OF ABILITY IN
THAT IN RELATIONSHIP BETWEEN
PREGNANCY AND SMELL. IT DOESN'T
SEEM A SITUATION THAT COMES
THROUGH EVERY SINGLE PREGNANT
WOMAN. BUT AGAIN THIS
CONVERSATION BRINGS UP THAT WE
HAVE A VERY TYPICAL IDEAS IN A
WAY IN WHICH THE SENSE OF SMELL
CONTRIBUTES TO OUR LIFE. IT IS
THE PREGNANCY, THE MEAL THAT I
HAVE IN FRONT OF US. THERE'S
MUCH MORE SUBTLE INFORMATION
WHEN YOU TALK TO PATIENTS THAT
LOST THAT CHANNEL OF
INFORMATION, THEY LOSE. I THINK
THE STRIKING ONE FOR ME IS TO
SEE ALL THE SOCIAL AND
RELATIONSHIP CONNECTIONS THAT
ARE LOST. SO THESE ARE
(INAUDIBLE) THERE IS A MEDICAL
LOSS SENSE OF SMELL BETWEEN THE
BIRTH OF TWO OF HE IS CHILDREN.
HE CLAIMS THAT HE CLAIMS THAT
THE BONDING HE HASN'T SECOND ONE
IS MUCH DIFFERENT THAN THE
BONDING HE HAS WITH THE FIRST
ONE. THIS IS AN ACT -- MAYBE A
PERSON THAT VALUES SENSE OF
SMELL, IT TELLS YOU WHAT ARE THE
RAMIFICATIONS THAT ARE NOT
USUALLY IN OUR SPEAR OF
CONVERSATION WHEN YOU THINK OF
SMELL. I'M SORRY WHAT HAPPENED
TO YOUR MOM, WE ARE TRYING TO
CHANGE AT LEAST -- WE CAN
PROVIDE VALIDATION THAT DOESN'T
COST ANYTHING MAKING PEOPLE NOT
FEELING CRAZY, IT IS SOMETHING
THAT WE CAN DO AS OF NOW.
>>THANK YOU SO MUCH. THAT WAS A
WONDERFUL PRESENTATION.
APPRECIATE IT.
[APPLAUSE]
>>ALL RIGHT. OUR LAST ORDER OF
BUSINESS IS BITTERSWEET BECAUSE
WE ARE SAYING GOODBYE TO FOUR OF
OUR COUNCIL MEMBERS. IT OCCURRED
TO ME WE ALL STARTED AT THE SAME
TIME. SO I CAME TO NIDCD FOUR
YEARS AGO AND I THINK WE HAVE
BEEN THROUGH A LOT TOGETHER, WE
HAVE BEEN THROUGH COVID, THROUGH
A LOT OF CHANGES. I PERSONALLY
WANT TO SAY HOW GRATEFUL I AM
FOR ALL OF YOUR ADVICE, YOUR
WISDOM YOU HAVE SHARED WITH US.
HOW MUCH I HAVE ENJOYED HAVING
YOU ON COUNCIL. SO AS IS OUR
PRACTICE, I'M GOING TO GO AROUND
AND GIVE CERTIFICATES AND GIVE
YOU THE OPPORTUNITY IF YOU WOULD
LIKE TO SAY A FEW WORDS. SO WE
WILL GO IN THIS ORDER. DR. RUTH
ANN EATOCK, DR. BARRY KELLEY AND
DAN SANES AND BEN STROWBRIDGE.
SO I WANT TO THANK EVERYBODY
HERE FOR THE OPPORTUNITY. I WILL
OPEN THAT LATER TO -- THIS IS A
CAPSTONE MANY YEARS ASSOCIATION
WITH NIDCD. IN FACT MY CAREER
LAUNCHED ABOUT THE SAME TIME
WITH NIDCD DID. I DON'T KNOW IF
ANYBODY ELSE IS OLD ENOUGH TO BE
IN THAT POSITION. BUT I FEEL
ATTACHED TO IT AS A RESULT. YOU
MAY BE AWARE OF HOW EXCITED WE
ALL WERE AT THAT FOUNDATION. I
THINK IN MANY WAYS OUR HOPES
HAVE BEEN REALIZED. I WANT TO
GIVE A COUPLE OF BASIC RESEARCH
EXAMPLES, BECAUSE THAT IS WHERE
I LIVE. THEY WILL FOCUS ON
THINGS I KNOW AT LEAST LITTLE
BIT ABOUT FOR OBVIOUS REASONS.
FIRST I WANT TO POINT OUT HOW
NIDCD RESEARCH SUPPORT HAS BEEN
INSTRUMENTAL IN THE EVOLUTION,
THE LONG WINDING ROAD TOWARDS
ALMOST UNDERSTANDING HOW SOUND
AND HEAD MOTION ARE DETECTED BY
SENSORY RECEPTORS IN THE INNER
EAR. WE HAVE GONE FROM REALLY
SIMPLE CARTOONS TO BEAUTIFUL
ATOMIC LEVEL IMAGES HOW
MOLECULES RESPOND TO THE IMPACT
OF THAT SPECIAL KIND OF
MECHANICAL ENERGY AND NIDCD HAS
BEEN SUPPORTING THESE
INVESTIGATORS ALL THE WAY ALONG.
THERE'S SIMILAR GREAT STORIES
FROM THE CHEMOSENSOR
(INAUDIBLE). NIDCD HAS ALSO
DIFFERENT EXAMPLE, BUT I THINK
IT IS KIND OF SPECIAL TO NIDCD
HOW GOOD IT IS. IT FOSTERS
REFINEMENT OF HEARING AID AND
COCHLEAR IMPLANT TECHNOLOGY,
ALONG THE WAY SORT OF REMIND YOU
OF A MODEL HOW YOU INTEGRATE
BASIC SCIENCE AND ENGINEERING
AND CLINICAL PRACTICE. WE WERE
DOING THAT, PEOPLE WERE DOING
THAT HERE BEFORE ANYBODY ELSE
WAS TALKING ABOUT IT. AND IN
FACT, FOR A LONG TIME GENERAL
PROSTHETIC WORLD DIDN'T SEEM TO
BE PAYING ATTENTION TO THIS
BEAUTIFUL NEUROPROSTHESIS THAT
WAS WORKING SO WELL IN THE INNER
EAR. ANYHOW, THERE ARE LOTS OF
THINGS THAT NIDCD HAS BEEN
REALLY IMPACTFUL IN DURING THE
COURSE OF MY CAREER. WE SAW
ANOTHER EXAMPLE OF THAT KIND OF
INTEGRATION IN THE BEAUTIFUL
TALK BY DR. PRIME PARMA. I WANT
TO MENTION NIDCD TRAINING
MISSION WHICH OF COURSE IS BIG
PART OF THE PORTFOLIO AND
INTEGRAL TO THE EVOLUTION OF
RESEARCH, I WILL GIVE AN EXAMPLE
FROM YESTERDAY SINCE I HAVE A
SHORT MEMORY P. YESTERDAY I WAS
REVIEWING THE CV OF A YOUNG
RESEARCHER JUNIOR FACULTY MEMBER
AND I REALIZED FROM THE LITTLE
MARCH OF ITEMS ON HER CV SHE'S
BEEN CONTINUOUSLY FUNDED BY
NIDCD SINCE BEGINNING WITH A
TRAINING GRANT SLOT AS A PRE-DOC
THROUGH PRE-DOCTORAL FELL HOE
SHIP, POST-DOCTORAL FELLOWSHIP,
99 TRANSDIVISIONAL AWARDS TO
FIRST JOB SHE CURRENTLY AND NOW
SHE HAS A BRAND NEW RO1. THAT IS
-- GIVES YOU THE IDEA WHAT
SUSTAINED INVESTMENT IS
NECESSARY TO GROW A HEARING
RESEARCHER BUT ALSO I CAN TELL
FROM ALL THE OTHER EXAMPLES I
CAN SEE THAT THEY ARE BEING AND
THAT GROUP WILL BE REWARDED MANY
TIMES OVER. THIS PARTICULAR
INDIVIDUAL, REALLY CREATIVE
RESEARCH AND ALSO ROLE MODEL
ALONG TO HELP THOSE DIMENSIONS
WORK UNDER-REPRESENTED GROUPS IN
RESEARCH. SO THE FUNDING IS
PREYLY IMPORTANT. OBVIOUSLY THE
MONEY MATTERS BUT I ALSO WANT TO
THANK EVERYBODY HERE FOR
COLLEGIALITY AND THE SUPPORT WE
ALL GET FROM NIDCD AT EVERY
LEVEL. I PERSONALLY RECEIVED
IMPACTFUL ADVICE AT CRITICAL
STAGES FROM AMAZING PROGRAM
OFFICERS WHO KNOW WHO THEY ARE.
WORKING IN SOMETIMES A VERY
DIFFICULT CONDITION LIKE SUCH AS
BUDGET CONSTRAINTS PANDEMICS AND
YET THEY ALWAYS SEEM PERFECTLY
HAPPY TO STOP EVERYTHING AND AND
TALK ABOUT WHATEVER ISSUE I'M
HAVINHAVING. THANK YOU TO THAT.N
FINALLY JUST TO WRAP UP. I
APPRECIATED A COUNCIL CARE AND
EFFORT YOU PUT INTO EVERY
MEETING I HAVE ATTENDED EVEN THE
ZOOM ONE TO SORT OF UNROLE THE
DEVELOPING PROCESS GROUP SO AS
MENTIONED THERE HAVE BEEN VERY
HAPPY TO BE ALONG FOR THIS
TRANSITITRANSITION. NEW INITIATE
STRATEGIC INITIATIVE. AND TO BE
BROUGHT ALONG CAREFULLY AS
COUNCIL. DESPITE THE PANDEMIC I
FEEL GRATEFUL TO BE AROUND FOR
SUCH AN INTERESTING TIME.
THANKS.
>>THANK YOU SO MUCH.
[APPLAUSE]
BARBARA KELLEY.
>>THANK YOU, DEB FOR MY
CERTIFICATE. LIKE DR. EATOCK I
REMEMBER THE BEGINNING AND THE
ESTABLISHMENT OF NIDCD, OUR
ORGANIZATION HEARING LOSS
ASSOCIATION OF AMERICA ADVOCATED
FOR IT ALONG WITH MANY OF YOU
AND IT WAS A VERY EXCITING DAY.
I THINK IN 1989 WHEN THIS
INSTITUTE WAS ESTABLISHED. I
FELT SO HONORED TO BE ABLE TO BE
PART OF THIS ADVISORY COUNCIL TO
REPRESENT THE VOICE OF THE
COMMUNITY OF PEOPLE WITH HEARING
LOSS. AND THERE HAS BEEN SUCH
GREAT WORK DONE, GREAT RESEARCH.
BUT I LEARNED A LOT ABOUT THE
OTHER WORK OF THE INSTITUTES,
DELAYED LANGUAGE DEVELOPMENT IN
CHILDREN. I HAVE LIVED LONG
ENOUGH TO SEE THIS. WHEN AS LAY
PERSON I'M NOT A SCIENTIST, TO
SAY OH, THEY ARE BOYS. THEY
WILL DEVELOP SOON ENOUGH BUT I
LEARNED HERE THAT ABOUT THE
RAMIFICATIONS OF THAT. I HAVE
LEARNED ABOUT TASTE AND SMELL
QUALITY OF LIFE, BALANCE ISSUES.
IN MY OWN LIFE HAVING FAMILY
MEMBERS WHO HAVE HAD STROKES WHO
CAN'T COMMUNICATE AFTER THE
STROKE AND SEEING THE QUALITY OF
LIFE OF THAT LIVED EXPERIENCE.
EVERYTHING THIS INSTITUTE PUTS
RESEARCH MONEY TO REALLY HAS AN
IMPACT ON THE INDIVIDUAL.
I WANT TO SAY I FEEL REALLY GOOD
ABOUT MY TAX DOLLARS AT WORK AND
SEEING EARLY STAGE INVESTIGATORS
WITH NEW IDEAS DOING RESEARCH AS
WELL AS SEASONED RESEARCHERS
DOING RESEARCH IN ALL THESE
AREAS AND IMPACT INDIVIDUAL AND
I WANT TO SAY THANK YOU THE
COUNCIL STAFF IS WONDERFUL AND
MY COLLEAGUES ON THE COUNCIL AS
WELL. IT'S BEEN A TRUE HONOR.
THANK YOU.
[APPLAUSE]
>>DR. DAN SANES.
>>I THINK I'LL LARGELY LET RUTH
ANN AND BARBARA'S ELOQUENT WORDS
SPEAK FOR ME TOO. I WANT STAFF
ALL PROGRAM STAFF TO KNOW HOW
WELL YOU ARE THOUGHT OF BY THE
COMMUNITY AND HOW PROUD WE ARE
OF YOU. IT IS AN UNUSUAL
CULTURE. I THINK THAT NIH AND
ALWAYS HAS BEEN, THERE'S REALLY
GREAT CONTINUITY. SO FROM THE
COMMUNITY AT LARGE, I WILL
CONVEY MY THANKS, THANKS FOR
INCLUDING ME IN THE PROCESS. I
FEEL LIKE ONE OF THE COOL THINGS
ABOUT BEING A SCIENTIST IS THEY
ALSO AS A TUNE. I LEARNED ABOUT
THE PROCESS AND BEING HERE. AND
THANKS VERY MUCH.
>>THANK YOU, DAN.
[APPLAUSE]
>>DR. STROWBRIDGE.
>>I'M THE LAST PERSON STANDING
BETWEEN YOU AND THE RECEPTION,
WHATEVER. SO I WILL BE EVEN
BRIEFER. IT HAS BEEN WONDERFUL
TO BE HERE. I'M APPRECIATIVE OF
THE OPPORTUNITY HERE. FROM THE
GRANT AWARDEE SIDE, PAPERWORK WE
HAVE PAPERWORK BACK. WE ARE
LUCKY WE GOT NO GRANT AWARD
PAPER BACK AND IT'S NICE TO GET
TO PUT FACES OF PEOPLE TO THE
PROCESS. BOTH PEOPLE RUNNING THE
INSTITUTE, AND THE PROGRAM SENOR
TO GET TO KNOW SOME OF THEM,
IT'S ET BEEN WONDERFUL.
OLFACTION WHETHER INSTITUTES
STARTED WAS NOT THE SEXY SENSE
THAT IT IS NOW. AND I THINK IT
IS WONDERFUL THE NIH AND
INSTITUTE WERE SUPPORTIVE OF
OLFACTION BACK THEN AND NOW
REAPING THE REWARD, NOBEL PRIZE
FEW YEARS AGO, MORE STUFF
HAPPENING. I THINK THE COMMUNITY
HEARING OLFACTION IS HAPPY WITH
WHAT YOU ARE DOING, WITH THE
INSTITUTE. I THINK GOING FORWARD
THE THING THAT ALWAYS IS SORT OF
UNUSUAL IN THE -- THINKING ANT
THESE MEETINGS IS INTERSECTION
FROM A LOT OF AREAS. LANGUAGE,
HEARING, CHEMICAL SENSES. I
THINK MORE AND MORE GOING TO BE
INTERACTION BETWEEN THOSE SENSES
AND THOSE AREAS. THE PEOPLE
COMING ON ARE ALSO GOING TO BE
PUSHING, LOOKING AT
MULTI-DISCIPLINE AND
MULTI-SENSORY ASPECTS TO THAT. I
THINK THAT IS SOMETHING THAT IS
GOING TO BE ONES TO WATCH IN THE
FUTURE. SO THANKS VERY MUCH.
[APPLAUSE]
>>THANK YOU ALL. I HOPE YOU
HAVE A GREAT EVENING. SEE YOU
TOMORROW MORNING.