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WELCOME TO NIDSC COUNCIL

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IN PARTICULAR WORKING
ON

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LOOKING AT BEHAVIORAL SIGNALS TO

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UNDERSTAND WHAT'S GOING ON IN

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THE BRAIN, MENTAL HEALTH, AND

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ALSO MORE RECENTLY WORKING WITH

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THE NEUROSCIENTISTS TO EXPLAIN

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HOW CHILDREN LEARN SPEECH.

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>>THANK YOU DR. LISA.

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>>I PEOPLE LISA GOFFMAN,
AT

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(INAUDIBLE) UNIVERSITY TEXAS

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DALLAS, NATIONAL RESEARCH

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HOSPITAL. I GET TO ANNOUNCE NEXT

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COUNCIL THAT'S WHERE I WILL BE.

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I STUDY LANGUAGE SPEECH MOTOR

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INTERACTIONS WITH DEVELOPMENTAL

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DISORDER AND SPEECH DISORDER AND

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(INAUDIBLE) DEVELOPMENT.

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>>DR. ANDY (INAUDIBLE).

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>>I'M ANDY GROVES, I WORK
IN

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THE DEPARTMENT OF NEUROSCIENCE,

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DEPARTMENT OF MOLECULAR AND

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HUMAN GENETICS AT BAYLOR COLLEGE

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OF MEDICINE HOUSTON. MY LAB

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STUDIES DEVELOPMENT REGENERATION

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AN EVOLUTION OF NCDC.

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>>DR. (INAUDIBLE).

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>>I AM PROFESSOR OF
NEUROLOGY

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AT JOHNS HOPKINS, I HAVE ALSO

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BEEN SPEECH LANGUAGE PATHOLOGIST

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AND I STUDY LANGUAGE RECOVERY

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AND COGNITIVE RECOVERY AFTER THE

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FIRST YEAR AFTER STROKE WITH

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(INAUDIBLE) BEHAVIORAL ANALYSIS 

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>>THANK YOU. MS. BARBARA

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KELLEY.

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>>I'M BARBARA KELLEY,
EXECUTIVE

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DIRECTOR OF THE HEARING LOSS

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ASSOCIATION AMERICA. LOCATED

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HERE IN THE DC AREA. CONSUMER

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FACING ORGANIZATION MADE UP OF

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PEOPLE WITH HEARING LOSS AND

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THOSE WHO TREAT THEM AND FAMILY

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AND FRIENDS. 

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>>DR. ANIL.

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>>(INAUDIBLE) DEPARTMENT
OF

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CHEMICAL ENGINEERING COLUMBIA

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UNIVERSITY. I'M A EAR PHYSICIAN

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AS WELL AS RESEARCH DESIGNING

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TOOLS MICRONEEDLES FOR

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(INAUDIBLE) HOPING TO OPEN UP

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ERA OF PHYSICIAN MEDICINE

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(INAUDIBLE). 

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>>I'M (INAUDIBLE) I AM
SENIOR

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COUNCIL AT FIDELITY NATIONAL

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FINANCIAL. AND I ALSO

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>>I'M DAN SANES, CENTER
FOR

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NEUROSCIENCE, MY RESEARCH

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ADDRESSINGS HOW DEVELOPMENTAL

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HEARING LOSS ATTACKS THE CENTRAL

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NERVOUS SYSTEM ESPECIALLY

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AUDITORY CORTEX, AND HOW THOSE

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CHANGES AFFECT ABILITY OF

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ANIMALS TO PROCESS

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>>DR. BEN STROWBRIDGE.

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>>I'M BEN STROWBRIDGE

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NEUROSCIENCES DEPARTMENT CASE

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WESTERN SCHOOL OF MEDICINE

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CLEVELAND. MY GROUP STUDIES

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(INAUDIBLE) ORGANIZATION OF LO

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DA CIRCUITS AND DIFFERENT BRAIN

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AREAS INCLUDING THE OLFACTORY

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BULB.

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>>THANKS. DR.
(INAUDIBLE).

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>>GOOD MORNING, I'M A
PROFESSOR

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AT THE UNIVERSITY OF CALIFORNIA

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SAN FRANCISCO IN SCHOOL OF

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NURSINURSING. MY AREA OF O RESEH

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FOCUSES ON THE EXPERIENCE OF

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HEARING LOSS IN OLDER ADULTS.

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ESPECIALLY IN THE CONTEXT OF THE

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DYAD, I'M ESPECIALLY INTERESTED

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IN ISSUES SURROUNDING THE IMPACT

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OF HEARING LOSS ON HEALTHCARE

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COMMUNICATION AND TRYING TO HELP

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PARTITIONERS -- PRACTITIONERS

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UNDERSTAND HEARING LOSS AND PAY

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ATTENTION TO IT BECAUSE IT IS

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NOT SCREENED VERY WELL IN

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PRIMARY CARE OTHER SETTINGS SO

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IT IS NOT TREATED OR DEALT WITH.

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THANK YOU.

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>>THANK YOU. NOW WE HAVE
THREE

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NEW COUNCIL MEMBERS WHO WILL BE

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INTRODUCING THE FIRST IS

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CATHERINE BOATMAN. MS. BOTEN

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(PHONETIC) IS ADVOCATE EDUCATOR

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FOR THE DEAF AND HARD OF

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HEARING.

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PRESIDENT OF NEW YORK CITY

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CHAPTER OF HEARING LOSS

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ASSOCIATION OF AMERICA. SHE IS A

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FORMER EDITOR NEW YORK TIMES

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WITH A SPECIALTY IN SCIENCE AND

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HEALTH AND HAS WRITTEN THROUGH

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NUMEROUS PUBLICATION INCLUDING

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THE NEW YORKER AND THE NEW YORK

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TIMES MAGAZINE. SHE IS AUTHOR OF

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SHOUTING MODE HEALTH WHY I AND

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50 MILLION OTHER AMERICANS CAN'T

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HEAR YOU. THIS IS ABOUT HER

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EXPERIENCE AND THE IMPACT OF

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LOSING HER HEARING IN MID LIFE.

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WOULD YOU LIKE TO SAY HELLO?

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>>SORRY, EVERYBODY THAT
WAS A

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VERY NICE DESCRIPTION, I DON'T

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HAVE ANYTHING TO ADD EXCEPT THAT

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I HAVE PROGRESSIVE BILATERAL

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HEARING LOSS AND I HAVE A

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COCHLEAR IMPLANT AND HEARING AID

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AND I GREATLY BENEFIT FROM THEM,

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FROM CAPTIONS AND FROM ASSISTED

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LISTENING SYSTEMS.  I'M

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DELIGHTED TO BE ON THIS ADVISORY

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BOARD. THANK YOU. 

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>>THANKS. WE ARE HAPPY TO
HAVE

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YOU. DR. DAN MURFIELD IS

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PROFESSOR IN THE DEPARTMENT OF

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BIOLOGY HEAD AND NECK SURGERY AT

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THE OHIO STATE UNIVERSITY. HE

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RECEIVED A Ph.D. IN BIOMEDICAL

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ENGINEERING AND HIS RESEARCH

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FOCUSES ON VESTIBULAR SYSTEM.

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SPECIFICALLY HE BRINGS

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BIOMEDICAL ENGINEERING

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BACKGROUND TO STUDY WAYS TO

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IMPROVE DIAGNOSTIC PROCEDURES

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FOR PATIENTS SUFFERING FROM

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VESTIBULAR SYMPTOMS.  HE IS ALSO

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INTERESTED IN VESTIBULAR TESTING

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AND IMPLANT DEVELOPMENT, ON

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BALANCE AND VESTIBULAR

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PERCEPTIPERCEPTION. HE'S HAD NUS

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GRANTS FROM NIH AND FUNDING FROM

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OTHER ORGANIZATIONS. DR.

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MURFIELD, WOULD YOU LIKE TO SAY

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HELLO?

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>>YOU DID SUCH A GREAT
JOB OF

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INTRODUCING ME BETTER THAN I CAN

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DO FOR MYSELF. THANK YOU. THE

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ONLY THING I WILL ADD IS THESE

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DAYS THE SOME OF MY INTERESTS

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EXPANDED TO INCLUDE THE

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INFLUENCES OF VESTIBULAR

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FUNCTION ON BALANCE AND IT IN

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TURN HOW IT IMPACTS FALLS

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ESPECIALLY AS AT LEAST SOME OF

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US GROW A LITTLE BIT OLDER EACH

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YEAR. THANK YOU. DR. SUSAN

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THIBEAULT IS PROFESSOR DIVISION

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OF BIOLOGY HEAD AND NECK

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SURGERY, MADISON, THE ENDOWED

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CHAIR IN HOE VICE CHAIR RESEARCH

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DEPARTMENT OF SURGERY. THE

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UNIVERSITY OF WISCONSIN HEALTH

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MEDICAL DIRECTOR OF SPEECH AND

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HEARING SERVICES. SHE HAS A

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Ph.D. IN COMMUNICATIONS

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DISORDERS AND HER RESEARCH IS

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FOCUSED ON VOCAL CORD MUCOSA

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BIOLOGY ENCOMPASSING

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REGENERATIVE MEDICINE IMMUNOLOGY

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AND DEVELOPMENT. SHE IS ALSO

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PRINCIPLE INVESTIGATOR FOR THE

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UNIVERSITY OF WISCONSIN MADISON

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VOICE AND (INAUDIBLE) OUTCOMES

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DATABASE WITH HEALTH RELATED

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DATA INCLUDING LONG TERM DATA

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FROM MORE THAN 5,000 PATIENTS

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SEEN AT THE UNIVERSITY OF

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WISCONSIN MADISON. DR.

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THIBEAULT.

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>>THAT WAS VERY NICE.
THRILLED

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TO BE HERE AND LOOKING FORWARD

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TO THE NEXT THREE YEARS, THANK

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YOU.

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>>THANK YOU. WE HAVE
THREE

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EX-OFFICIO MEMBERS, THE FIRST IS

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DR. JUDY SCHAFER WHO IS HERE FOR

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DR. BECK FOR THE DEPARTMENT OF

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VETERAN AFFAIRS.

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>>I'M JUDY SCHAFER. I'M

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AUDIOLOGIST AND REHABILITATION

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PLANNING SPECIALIST FOR THE

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VETERANS HEALTH ADMINISTRATION.

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HEARING CONSERVATION AREAS.

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DISABILITY COMPENSATION,

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AUDITORY MILITARY INJURIES AND

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TOXIC EXPOSURES AS WELL AS

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SENSORY HEALTH AND DUAL SENSORY

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IMPAIRMENT.

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>>THANK YOU, DR. SCHAFER.

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ONLINE WE HAVE DR. JEREMY NELSON

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FROM THE DEPARTMENT OF DEFENSE.

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DR. NELSON WOULD YOU LIKE TO SAY

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HELLO?

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>>GOOD AFTERNOON, JEREMY

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NELSON, NEUROSCIENTIST BY

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TRAINING. I OVERSEE THE DOD

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JOINT INVESTMENTS AND HEARING

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VISION PAIN AND BALANCE. THANKS 

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>>THANK YOU. MS. CHRISTY

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(INAUDIBLE) FROM NIOCH IS HERE.

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>>I'M FROM (INAUDIBLE)

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AUDIOLOGIST, I PRIMARILY WORK ON

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METHODS OF PREVENTING HEARING

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LOSS IN WORKERS EXPOSED TO

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(INAUDIBLE) AND OTHER TOXINS AND

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DO WORK COLLABORATING WITH NI

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NIDCC (INAUDIBLE).

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>>WE HAVE FLOWER AD HOC
MEMBERS

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WHOP I WILL INTRODUCE IN TURN,

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THE FIRST IS DR. JAY GODFRY.

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PROFESSOR VICE CHAIR OF RESEARCH

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IN THE DEPARTMENT OF NEUROLOGY

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AND DEPARTMENT OF PSYCHOLOGY AT

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THE UNIVERSITY OF PENNSYLVANIA. 

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HE OBTAINED M.D. DEGREE IN

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MEDICINE AND Ph.D. IN

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PHYSIOLOGY AND NEUROSCIENCE FROM

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NEW YORK UNIVERSITY. HIS

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RESEARCH FOCUSES ON

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UNDERSTANDING HOW THE HUMAN

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BRAIN TRANSFORMS OLFACTORY INPUT

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INTO PERCEPTUAL REPRESENTATION.

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AND HOW LEARNING MEMORY AND

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EXPERIENCE MODULATE THIS

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INFORMATION TO ENHANCE ODOR,

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OBJECT RECOGNITION AND

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DISCRIMINATION AT THE BEHAVIORAL

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COGNITIVE AND NEURAL LEVELS. 

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HE'S RECEIVED GRANT FUNDING FROM

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NIH AND OTHER ORGANIZATIONS AND

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HE'S BEEN AN ACTIVE NIH REVIEWER

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AND IS SENIOR EDITOR FOR THE

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JOURNAL OF NEUROSCIENCE. DR.

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GODFRY.

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>>THANK YOU, I PROBABLY
USE

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MORE WORDS THAN I NEEDED TO. BUT

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I'M VERY PLEASED TO BE HERE. IF

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THERE WERE ANYTHING TO ADD I

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JUST SAY THIS POINT MY RESEARCH

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IS FOCUSING ON KIND OF

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MULTI-MODAL PERSPECTIVE WHERE WE

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ARE DOING ANYTHING FINAL

256
00:10:23,480 --> 00:10:26,840
FUNCTIONAL IMAGING TO

257
00:10:26,840 --> 00:10:29,760
INTRACRANIAL EEG RECORDINGS AND

258
00:10:29,760 --> 00:10:34,000
EVEN NOW TRYING TO DEVELOP MOUSE

259
00:10:34,000 --> 00:10:36,600
MODEL OF THE INTERACTIONS

260
00:10:36,600 --> 00:10:39,480
BETWEEN SOUNDS AND SMELLS IN THE

261
00:10:39,480 --> 00:10:39,800
(INAUDIBLE).

262
00:10:39,800 --> 00:10:44,520
>>THANK YOU. MS. KIMBERLY

263
00:10:44,520 --> 00:10:45,880
(INAUDIBLE) IS EXECUTIVE

264
00:10:45,880 --> 00:10:47,640
DIRECTOR AT THE DYSPHONIA

265
00:10:47,640 --> 00:10:48,520
INTERNATIONAL AND SHE WAS

266
00:10:48,520 --> 00:10:50,840
PREVIOUSLY DIRECTOR WITH THE

267
00:10:50,840 --> 00:10:53,520
AMITA HEALTH NEUROSCIENCES

268
00:10:53,520 --> 00:10:55,400
INSTITUTE. SHE IS A SEASONED

269
00:10:55,400 --> 00:10:57,120
PROFESSIONAL WITH 20 YEARS

270
00:10:57,120 --> 00:10:59,000
EXPERIENCE IN LEADERSHIP AND

271
00:10:59,000 --> 00:11:01,200
NON-PROFIT FIELD WITH PATIENT

272
00:11:01,200 --> 00:11:03,320
ADVOCACY GROUPS AND RARE

273
00:11:03,320 --> 00:11:04,680
DISEASES WITH FOCUS ON THE VOICE

274
00:11:04,680 --> 00:11:06,320
OF THE COMMUNITY BEING

275
00:11:06,320 --> 00:11:09,080
REPRESENTED THROUGH THE PROGRAMS

276
00:11:09,080 --> 00:11:10,760
THAT THE ORGANIZATION. SHE IS

277
00:11:10,760 --> 00:11:12,560
RESPONSIBLE FOR DEVELOPING AND

278
00:11:12,560 --> 00:11:14,120
IMPLEMENTING PROGRAMS RELATED TO

279
00:11:14,120 --> 00:11:17,320
RESEARCH, AWARENESS, SUPPORT AND

280
00:11:17,320 --> 00:11:19,680
EDUCATIEDUCATION. SHE WORKS WITH

281
00:11:19,680 --> 00:11:21,480
SCIENTIFIC AND MEDICAL ADVISORY

282
00:11:21,480 --> 00:11:24,040
BOARD TO EXPAND THE RESEARCH

283
00:11:24,040 --> 00:11:26,040
PROGRAM. SHE SERVES AS THE

284
00:11:26,040 --> 00:11:29,120
PATIENT ADVOCACY LIAISON FOR THE

285
00:11:29,120 --> 00:11:30,160
DYSTONIA COALITION AND WRITTEN

286
00:11:30,160 --> 00:11:32,160
MORE THAN 50 ARTICLES RELATED TO

287
00:11:32,160 --> 00:11:34,640
VOICE DISORDERS.

288
00:11:34,640 --> 00:11:37,240
>>THANK YOU SO MUCH. IT
IS AN

289
00:11:37,240 --> 00:11:39,080
HON MORE TO BE PART OF THIS I'M

290
00:11:39,080 --> 00:11:41,400
EXCITED TO LEARN MORE AND HELP

291
00:11:41,400 --> 00:11:42,120
REPRESENT THE VOICE OF THE

292
00:11:42,120 --> 00:11:43,640
PEOPLE WHO ARE LIVING WITH THESE

293
00:11:43,640 --> 00:11:45,200
LIFE ALTERING DISORDERS. THANK

294
00:11:45,200 --> 00:11:46,000
YOU. 

295
00:11:46,000 --> 00:11:50,920
>>THANK YOU. NEXT IS DR.
JOSE

296
00:11:50,920 --> 00:11:54,800
PENA, A PROFESSOR DOMINIQUE

297
00:11:54,800 --> 00:11:56,160
DEPARTMENT OF NEUROSCIENCE AT

298
00:11:56,160 --> 00:11:57,080
ALBERT EINSTEIN COLLEGE OF

299
00:11:57,080 --> 00:11:59,880
MEDICINE. HIS RESEARCH INVOLVES

300
00:11:59,880 --> 00:12:01,120
INVESTIGATING THE BRAIN AND HOW

301
00:12:01,120 --> 00:12:06,840
INFORMATION IS PROCESSED AND

302
00:12:06,840 --> 00:12:08,400
REPRESENTED HE STUDIES THE

303
00:12:08,400 --> 00:12:10,320
AUDITORY SYSTEM WITH FOCUS ON

304
00:12:10,320 --> 00:12:14,520
NEURAL CODING. HE RECEIVED GRANT

305
00:12:14,520 --> 00:12:16,280
FUNDING BY NIH SINCE 2005 AND

306
00:12:16,280 --> 00:12:18,000
BEEN ACTIVE GRANT REVIEWER FOR

307
00:12:18,000 --> 00:12:19,520
NIH AND OTHER AGENCIES FOR MANY

308
00:12:19,520 --> 00:12:22,480
YEARS. HE'S ALSO A JOURNAL

309
00:12:22,480 --> 00:12:23,760
REVIEWER FOR JOURNAL SUCH AS

310
00:12:23,760 --> 00:12:28,320
JOURNAL OF MEDICINE.

311
00:12:28,320 --> 00:12:33,440
>>(INAUDIBLE) I WORK ON

312
00:12:33,440 --> 00:12:37,760
PROJECTS ARE INVESTIGATED WITH

313
00:12:37,760 --> 00:12:48,280
BRAIN (INAUDIBLE) STATISTICAL

314
00:12:54,640 --> 00:12:55,160
(INAUDIBLE) WE ARE

315
00:12:55,160 --> 00:12:57,280
INVESTIGATING.

316
00:12:57,280 --> 00:12:59,040
>>THANK YOU.

317
00:12:59,040 --> 00:13:04,000
>>DR. LARRY TRUSSLE,
PROFESSOR

318
00:13:04,000 --> 00:13:07,320
ASSOCIATE DIRECT FOR FOR

319
00:13:07,320 --> 00:13:09,320
LARYNGOLOGY DEPARTMENT OF

320
00:13:09,320 --> 00:13:10,440
LARYNGOLOGY OREGON RESEARCH

321
00:13:10,440 --> 00:13:13,160
HEARING CENTER AT OREGON HEALTH

322
00:13:13,160 --> 00:13:14,360
AND SCIENCE UNIVERSITY. HE IS

323
00:13:14,360 --> 00:13:16,760
BOTH Ph.D. IN BIOLOGY.  HIS

324
00:13:16,760 --> 00:13:18,200
RESEARCH IS FOCUSED ON THE

325
00:13:18,200 --> 00:13:20,400
NEUROSCIENCE OF HEARING AND

326
00:13:20,400 --> 00:13:21,600
BALANCE. SPECIFICALLY HIS

327
00:13:21,600 --> 00:13:24,040
INTEREST AREAS OF INTEREST

328
00:13:24,040 --> 00:13:26,000
INCLUDE BRAIN STEM CIRCUITS THAT

329
00:13:26,000 --> 00:13:29,040
PROCESS ACOUSTIC SIGNALS AND

330
00:13:29,040 --> 00:13:30,640
SYNAPTIC (INAUDIBLE). HE HAD

331
00:13:30,640 --> 00:13:32,080
NUMEROUS GRANTS FROM NIH AND

332
00:13:32,080 --> 00:13:35,120
REVIEWER AND EDITOR FOR MANY

333
00:13:35,120 --> 00:13:37,120
JOURNALS OF NEUROSCIENCE. IN

334
00:13:37,120 --> 00:13:39,760
2022, HE RECEIVED THE DISCOVERY

335
00:13:39,760 --> 00:13:43,120
AWARD FROM OREGON MEDICAL

336
00:13:43,120 --> 00:13:45,160
RESEARCH COUNCIL.

337
00:13:45,160 --> 00:13:48,360
>>THANK YOU. PLEASURE TO
BE

338
00:13:48,360 --> 00:13:50,080
HERE AND MEET ALL OF YOU AND

339
00:13:50,080 --> 00:13:51,320
GREAT HONOR TO BE PART OF THIS

340
00:13:51,320 --> 00:13:52,000
PROCESS.

341
00:13:52,000 --> 00:13:55,360
>>THANK YOU. WELCOME TO
ALL

342
00:13:55,360 --> 00:13:57,560
COUNCIL MEMBERS INCLUDING THE

343
00:13:57,560 --> 00:13:59,880
NEW MEMBERS AND OUR AD HOC

344
00:13:59,880 --> 00:14:07,280
MEMBERS. VERY HAPPY TO HAVE YOU 

345
00:14:07,280 --> 00:14:11,120
SO NEXT IS THE MINUTES FROM THE

346
00:14:11,120 --> 00:14:15,320
MAY 18 TO 19 NIDCD ADVISORY

347
00:14:15,320 --> 00:14:16,880
COUNCIL MEETING. ARE THERE

348
00:14:16,880 --> 00:14:21,360
ADDITIONS OR CORRECTIONS? TO THE

349
00:14:21,360 --> 00:14:23,360
MEETINGS? HEARING NONE IS THERE

350
00:14:23,360 --> 00:14:25,000
A MOTION THEY BE APPROVED AS

351
00:14:25,000 --> 00:14:32,000
WRITTEN? THANK YOU. THESE ARE

352
00:14:32,000 --> 00:14:35,640
THE DATES OF THE UPCOMING 6

353
00:14:35,640 --> 00:14:38,640
ADVISORY COUNCIL MEETINGS.

354
00:14:38,640 --> 00:14:40,720
DISCUSSED PREVIOUSLY JANUARY

355
00:14:40,720 --> 00:14:44,560
MEETING WILL ALWAYS BE HELD

356
00:14:44,560 --> 00:14:46,120
VIRTUALLY AND SO WE ARE

357
00:14:46,120 --> 00:14:48,400
SCHEDULED TO HAVE THAT MEETING

358
00:14:48,400 --> 00:14:50,520
JANUARY 25 AND 26TH. OUR NEXT IN

359
00:14:50,520 --> 00:14:53,520
PERSON MEETING WILL BE IN MAY ON

360
00:14:53,520 --> 00:14:55,760
THE 16TH AND 17TH SO PLEASE

361
00:14:55,760 --> 00:14:57,720
REVIEW THE DATES AND IF YOU SEE

362
00:14:57,720 --> 00:14:59,520
ANY MAJOR CONFLICTS OR PROBLEMS

363
00:14:59,520 --> 00:15:05,040
PLEASE DO LET US KNOW. NOW I

364
00:15:05,040 --> 00:15:08,200
WOULD LIKE TO PROVIDE SOME

365
00:15:08,200 --> 00:15:11,400
UPDATES. THE FIRST HAS TO DO

366
00:15:11,400 --> 00:15:13,840
WITH THE BUDGET. FIRST YOU KNOW

367
00:15:13,840 --> 00:15:15,320
DOUBT HEARD ABOUT THE GREAT

368
00:15:15,320 --> 00:15:18,120
CONCERNS ABOUT THE BUDGET AND SO

369
00:15:18,120 --> 00:15:19,920
WE ARE IN A SITUATION NOW WHERE

370
00:15:19,920 --> 00:15:21,600
OF COURSE WE DO T NOT HAVE THE

371
00:15:21,600 --> 00:15:25,880
BUDGET FOR THE FISCAL YEAR 2023

372
00:15:25,880 --> 00:15:29,520
WHICH OR 2024 WHICH BEGINS

373
00:15:29,520 --> 00:15:32,800
OCTOBER 1ST. CONGRESS IS DUE TO

374
00:15:32,800 --> 00:15:36,720
COME BACK SOON. BETWEEN NOW AND

375
00:15:36,720 --> 00:15:38,240
OCTOBER 1ST THERE ARE THREE

376
00:15:38,240 --> 00:15:41,800
POSSIBLE OUTCOMES, ONE IS THE

377
00:15:41,800 --> 00:15:43,600
BILL TO PASS THE BUDGET. SECOND

378
00:15:43,600 --> 00:15:46,600
IS THEY WILL NOT PASS THE BUDGET

379
00:15:46,600 --> 00:15:48,040
BUT PASS A CONTINUING

380
00:15:48,040 --> 00:15:49,840
RESOLUTION. AND THIS WILL

381
00:15:49,840 --> 00:15:50,920
CONTINUE SORT OF UNTIL THE END

382
00:15:50,920 --> 00:15:53,520
OF THE YEAR. AND THEN THE THIRD

383
00:15:53,520 --> 00:15:55,640
IS THAT THE GOVERNMENT WILL SHUT

384
00:15:55,640 --> 00:15:56,520
DOWN WHICH IS ALWAYS SOMETHING

385
00:15:56,520 --> 00:15:57,720
THAT NONE OF US WANT TO HAVE

386
00:15:57,720 --> 00:16:02,560
HAPPEN. WE ARE NOT ALLOWED TO

387
00:16:02,560 --> 00:16:06,240
CONTINUE OUR WORK IF THE

388
00:16:06,240 --> 00:16:08,600
GOVERNMENT SHUTS DOWN. BANNED

389
00:16:08,600 --> 00:16:10,280
FROM EMAIL OR DOING ANY WORK SO

390
00:16:10,280 --> 00:16:12,440
THAT'S THE LEAST DESIRABLE OF

391
00:16:12,440 --> 00:16:17,400
THESE OUTCOMES.  AS PARTS OF THE

392
00:16:17,400 --> 00:16:20,920
FEDERAL DEBT LIMIT NEGOTIATIONS

393
00:16:20,920 --> 00:16:24,160
IT WAS DETERMINED THAT THE

394
00:16:24,160 --> 00:16:29,120
BUDGET COULD ONLY INCREASE 1% IN

395
00:16:29,120 --> 00:16:33,960
FISCAL YEAR 2025, BECAUSE OF THE

396
00:16:33,960 --> 00:16:37,640
RESTRICTIONS THAT ARE BASED ON

397
00:16:37,640 --> 00:16:39,600
THOSE NEGOTIATIONS WE EXPECT TO

398
00:16:39,600 --> 00:16:42,240
HAVE RELATIVELY FLAT FUNDING FOR

399
00:16:42,240 --> 00:16:44,520
AT LEAST THE NEXT COUPLE OF

400
00:16:44,520 --> 00:16:48,200
YEARS. THE FUNDING TEST REALLY

401
00:16:48,200 --> 00:16:50,400
TIE THE HANDS OF CONGRESS. THEY

402
00:16:50,400 --> 00:16:52,520
HAVE THE SENATE AND THE HOUSE

403
00:16:52,520 --> 00:16:55,680
BOTH RELEASED THEIR BUDGETS WITH

404
00:16:55,680 --> 00:17:00,920
VERY MODEST INCREASES AND

405
00:17:00,920 --> 00:17:02,320
DECREASES IN ANY SITUATION SO

406
00:17:02,320 --> 00:17:04,520
THE SENATE APPROPRIATIONS

407
00:17:04,520 --> 00:17:07,360
INCLUDE A SMALL INCREASE OF 265

408
00:17:07,360 --> 00:17:11,280
MILLION TO THE TOTAL NIH BUDGET

409
00:17:11,280 --> 00:17:12,840
FOR VERY SPECIFIC INITIATIVES

410
00:17:12,840 --> 00:17:14,200
THAT ARE IN FEDERAL INSTITUTES

411
00:17:14,200 --> 00:17:16,400
AND CENTERS. THIS IS IN THE

412
00:17:16,400 --> 00:17:18,840
BACKGROUND OF THE TOTAL NIH

413
00:17:18,840 --> 00:17:21,160
BUDGET WHICH IS ABOUT $50

414
00:17:21,160 --> 00:17:23,400
BILLION, CERTAINLY VERY MODEST

415
00:17:23,400 --> 00:17:26,080
INCREASE PARTICULARLY WHEN YOU

416
00:17:26,080 --> 00:17:28,720
CONSIDER THE EFFECTS OF

417
00:17:28,720 --> 00:17:30,520
INFLATION. THAT BILL LEFT MOST

418
00:17:30,520 --> 00:17:32,880
INSTITUTES AND CENTERS INCLUDING

419
00:17:32,880 --> 00:17:36,320
OURS AS FAR AS WE CAN TELL FLAT,

420
00:17:36,320 --> 00:17:39,400
FLAT BUDGET COMPARED TO FY 2023 

421
00:17:39,400 --> 00:17:41,680
ON THE HOUSE SIDE SEVERAL

422
00:17:41,680 --> 00:17:43,480
MEMBERS OF THE HOUSE MAJORITY

423
00:17:43,480 --> 00:17:47,800
PUSHED FOR DEEPER CUTS INTO THE

424
00:17:47,800 --> 00:17:50,240
FEDERAL BUDGET. AS A RESULT OF

425
00:17:50,240 --> 00:17:51,960
THE HOUSE SUBCOMMITTEE BILL

426
00:17:51,960 --> 00:17:53,440
INCLUDED REDUCTION TO THE NIH

427
00:17:53,440 --> 00:17:56,520
BUDGET OF MORE THAN $3.7 BILLION

428
00:17:56,520 --> 00:17:59,320
THAT IS FOCUSED ON SEVERAL

429
00:17:59,320 --> 00:18:01,720
SPECIFIC NIH INSTITUTES AND

430
00:18:01,720 --> 00:18:04,440
CENTERS AND RESEARCH PROGRAMS

431
00:18:04,440 --> 00:18:05,360
THAT AGAIN LEADS MOST INSTITUTE

432
00:18:05,360 --> 00:18:07,560
AND CENTER BUDGET LEVELS FLAT

433
00:18:07,560 --> 00:18:08,920
COMPARED TO THE CURRENT FISCAL

434
00:18:08,920 --> 00:18:17,160
YEAR. AS FAR AS WE CAN TELL THE

435
00:18:17,160 --> 00:18:18,960
BUDGET FOR NIDCD WILL BE FLAT

436
00:18:18,960 --> 00:18:23,000
COMPARED TO THE CURRENT FISCAL

437
00:18:23,000 --> 00:18:26,440
YEAR. TOMORROW, MR. ERIC

438
00:18:26,440 --> 00:18:28,040
WILLIAMS WILL PROVIDE MORE

439
00:18:28,040 --> 00:18:33,200
DETAILS TO THE COUNCIL ON THE

440
00:18:33,200 --> 00:18:35,160
CURRENT BUDGET AT 11:15 A.M.

441
00:18:35,160 --> 00:18:36,080
THEN IN JANUARY WHEN THE

442
00:18:36,080 --> 00:18:39,280
SITUATION IS MORE CLEAR WE PLAN

443
00:18:39,280 --> 00:18:41,520
TO DISCUSS IN MORE DETAIL THE

444
00:18:41,520 --> 00:18:43,160
BUDGET AND HOW BUDGET DECISIONS

445
00:18:43,160 --> 00:18:45,720
WILL BE MADE GOING FORWARD

446
00:18:45,720 --> 00:18:51,320
GIVING THESE CONSTRAINTS.  NOW

447
00:18:51,320 --> 00:18:52,560
TO SOME OTHER UPDATES.  MANY OF

448
00:18:52,560 --> 00:18:57,200
YOU ATTENDED THE MAY COUNCIL AND

449
00:18:57,200 --> 00:18:59,880
HEARD DR. PATTY BRENNAN, GLAD WE

450
00:18:59,880 --> 00:19:02,840
HAVE HER THERE BECAUSE THE LAST

451
00:19:02,840 --> 00:19:04,280
COUPLE OF WEEKS SHE HAS TO

452
00:19:04,280 --> 00:19:07,280
RETIREMENT. SO PATTY BRENNAN HAS

453
00:19:07,280 --> 00:19:10,600
BEEN A TREMENDOUS CHAMPION OF

454
00:19:10,600 --> 00:19:12,720
BIOMEDICAL SCIENCE ACROSS NIH,

455
00:19:12,720 --> 00:19:13,920
UNDER HER LEADERSHIP THE

456
00:19:13,920 --> 00:19:15,480
NATIONAL LIBRARY OF MEDICINE HAS

457
00:19:15,480 --> 00:19:18,600
BEEN THE EPICENTER OF THIS

458
00:19:18,600 --> 00:19:23,040
ACTIVITY. AT NIH. SHE'S

459
00:19:23,040 --> 00:19:24,920
TREMENDOUSLY CONTRIBUTED TO

460
00:19:24,920 --> 00:19:26,440
THESE PROGRAMS. WHEN SHE SPOKE

461
00:19:26,440 --> 00:19:28,560
AT OUR COUNCIL IN MAY SHE SPOKE

462
00:19:28,560 --> 00:19:33,440
ABOUT THE INAUGURAL NIH DIGITAL

463
00:19:33,440 --> 00:19:37,600
STRATEGY PLAN. AND NOTED THAT

464
00:19:37,600 --> 00:19:39,560
NIDCD COULD SUPPORT STRATEGY BY

465
00:19:39,560 --> 00:19:41,480
IDENTIFYING AND ENABLING

466
00:19:41,480 --> 00:19:42,880
INSTITUTE SPECIFIC TECHNOLOGY

467
00:19:42,880 --> 00:19:45,320
INVESTMENT THAT WOULD ALIGN WITH

468
00:19:45,320 --> 00:19:48,800
THE NIH DATA SCIENCE MISSION. WE

469
00:19:48,800 --> 00:19:51,360
WILL BE HEARING MORE ABOUT DATA

470
00:19:51,360 --> 00:19:54,960
SCIENCE LATER TODAY.  WE HAVE A

471
00:19:54,960 --> 00:19:56,160
NEW DIRECTOR OF THE NATIONAL

472
00:19:56,160 --> 00:19:58,640
INSTITUTE OF ALLERGY INFECTIOUS

473
00:19:58,640 --> 00:20:03,360
DISEASES. OR NIAID. DR. TABAK

474
00:20:03,360 --> 00:20:08,840
ANNOUNCED THAT DR. JEANNE

475
00:20:08,840 --> 00:20:10,680
MARRAZZO WILL BE DIRECTOR OF

476
00:20:10,680 --> 00:20:12,160
THAT INSTITUTE. SHE COMES TO US

477
00:20:12,160 --> 00:20:13,280
FROM UNIVERSITY OF ALABAMA

478
00:20:13,280 --> 00:20:15,160
BIRMINGHAM WHERE SHE IS DIRECTOR

479
00:20:15,160 --> 00:20:17,960
OF THE DIVISION OF INFECTIOUS

480
00:20:17,960 --> 00:20:21,920
DISEASES. DR. MARRAZZO RESEARCH

481
00:20:21,920 --> 00:20:23,960
IN DISCOVERY AND IMPLEMENTATION

482
00:20:23,960 --> 00:20:25,560
SCIENCE HAS FOCUSED ON THE HUMAN

483
00:20:25,560 --> 00:20:27,160
MICROBIOME, SPECIFICALLY AS I

484
00:20:27,160 --> 00:20:29,920
RELATES TO FEMALE REPRODUCTIVE

485
00:20:29,920 --> 00:20:35,920
TRACT INFECTIONS AND HORMONAL

486
00:20:35,920 --> 00:20:37,640
CONTRACEPTION. PREVENTION OF HIV

487
00:20:37,640 --> 00:20:39,000
USING BIOMEDICAL INTERVENTIONS

488
00:20:39,000 --> 00:20:40,640
AND PATHOGENESIS AND MANAGEMENT

489
00:20:40,640 --> 00:20:46,680
OF BACTERIAL VAGINAOSIS

490
00:20:46,680 --> 00:20:49,440
SPECIFICALLY DISEASES AND HIV

491
00:20:49,440 --> 00:20:52,120
INFECTED PERSON. IN ANTIBIOTIC

492
00:20:52,120 --> 00:20:53,720
RESISTANCE AND GONORRHEA. SHE'S

493
00:20:53,720 --> 00:20:55,440
PRINCIPLE INVESTIGATOR ON NIH

494
00:20:55,440 --> 00:20:58,400
GRANTS CONTINUOUSLY SINCE 1997

495
00:20:58,400 --> 00:21:00,280
AND HAS SERVED FREQUENTLY AS

496
00:21:00,280 --> 00:21:02,960
PEER REVIEWER AND ADVISORY

497
00:21:02,960 --> 00:21:08,360
COMMITTEE MEMBER. DR. MARRAZZO

498
00:21:08,360 --> 00:21:09,880
BEGINS HER ROLE AS NIAID

499
00:21:09,880 --> 00:21:12,240
DIRECTOR IN THE FALL, LIKELY

500
00:21:12,240 --> 00:21:13,680
SOMETIME IN OCTOBER WHERE SHE

501
00:21:13,680 --> 00:21:17,440
WILL OVER SEE NIAID BUDGET OF

502
00:21:17,440 --> 00:21:18,280
$6.3 BILLION, SO IT IS ONE OF

503
00:21:18,280 --> 00:21:22,840
THE BIGGER NIH INSTITUTES. THE

504
00:21:22,840 --> 00:21:24,920
INSTITUTES OF COURSE RESEARCH TO

505
00:21:24,920 --> 00:21:26,360
ADVANCE UNDERSTANDING DIAGNOSIS

506
00:21:26,360 --> 00:21:28,160
AND TREATMENT IN INFECTIOUS

507
00:21:28,160 --> 00:21:30,400
IMMUNOLOGIC AND ALLERGIC DISEASE

508
00:21:30,400 --> 00:21:33,560
SO LOOK FORWARD TO WELCOMING.

509
00:21:33,560 --> 00:21:37,960
THEN IN OUR OWN NIDCD WE ARE

510
00:21:37,960 --> 00:21:41,800
VERY, VERY PLEASED TO WELCOME

511
00:21:41,800 --> 00:21:45,320
DR. GAYLA POLING WHO WILL JOIN

512
00:21:45,320 --> 00:21:46,520
LATE OCTOBER AS NEW CHIEF

513
00:21:46,520 --> 00:21:49,640
RESEARCH AUDIOLOGIST IN THE

514
00:21:49,640 --> 00:21:51,600
NIDCD AUDIOLOGY UNIT. THROUGHOUT

515
00:21:51,600 --> 00:21:54,320
HER CAREER DR. POLING STUDIED

516
00:21:54,320 --> 00:21:56,120
AND DEVELOPED DIAGNOSTIC

517
00:21:56,120 --> 00:21:58,120
APPROACHES FOR THE EARLY

518
00:21:58,120 --> 00:21:59,520
DETECTION AND PREVENTION OF

519
00:21:59,520 --> 00:22:03,280
HEARING LOSS CAUSED BY AGING,

520
00:22:03,280 --> 00:22:05,280
NOISE AND OTO TOXIC MEDICATION.

521
00:22:05,280 --> 00:22:07,960
IN HER ROLE AT THE MAYO CLINIC

522
00:22:07,960 --> 00:22:11,120
SHE SERVED AS THE CHAIR OF THE

523
00:22:11,120 --> 00:22:15,000
ONE MAYO AUDIOLOGY SUBJECT AND

524
00:22:15,000 --> 00:22:16,400
SUBJECT MATTER EXPERT FOR THE

525
00:22:16,400 --> 00:22:18,840
PLUMBER EXPERT A MASSIVE EXPERT

526
00:22:18,840 --> 00:22:24,400
TO UNITE ALL MAYO LOCATIONS ON

527
00:22:24,400 --> 00:22:26,960
ONE ELECTRONIC HEALTH RECORD AND

528
00:22:26,960 --> 00:22:29,400
MANAGE SYSTEM. SHE CHAMPIONED

529
00:22:29,400 --> 00:22:32,280
CONTINUOUS ADVANCEMENT IN

530
00:22:32,280 --> 00:22:34,240
ELECTRONIC HEALTH RECORDS AND

531
00:22:34,240 --> 00:22:35,120
AUDIO LOGICAL DATABASE

532
00:22:35,120 --> 00:22:37,520
DEVELOPMENT WHICH IS HUGELY

533
00:22:37,520 --> 00:22:39,640
BENEFICIAL TO OUR AUDIOLOGY UNIT

534
00:22:39,640 --> 00:22:43,080
WHICH CON PAINS A HUGE AMOUNT OF

535
00:22:43,080 --> 00:22:46,160
DATA FROM MANY, MANY YEARS OF

536
00:22:46,160 --> 00:22:50,720
RESEARCH. AT THE NIH NIDCD

537
00:22:50,720 --> 00:22:53,000
AUDIOLOGY UNIT DR. POLLING LEADS

538
00:22:53,000 --> 00:22:54,840
RESEARCH AND CLINICAL

539
00:22:54,840 --> 00:22:56,840
LABORATORY. THE AUDIOLOGY UNIT

540
00:22:56,840 --> 00:22:59,680
IS A KEY COMPONENT OF THE NIH

541
00:22:59,680 --> 00:23:03,560
CLINICAL CENTER. IT PROVIDES

542
00:23:03,560 --> 00:23:05,120
HEARING AND BALANCE EVALUATION

543
00:23:05,120 --> 00:23:06,160
CLINICAL STUDY PARTICIPANTS

544
00:23:06,160 --> 00:23:08,520
INCLUDING ADULT AND PEDIATRIC

545
00:23:08,520 --> 00:23:10,360
PATIENTS WITH RARE DISEASES AS

546
00:23:10,360 --> 00:23:14,000
WELL AS PATIENTS TAKING LIFE

547
00:23:14,000 --> 00:23:17,880
SAVINGS OF POTENTIALLY OTO TOXIC

548
00:23:17,880 --> 00:23:19,560
DRUG TREATMENT. THIS RECRUITMENT

549
00:23:19,560 --> 00:23:21,840
IS RESULT OF NATIONAL SEARCH

550
00:23:21,840 --> 00:23:23,880
WHICH FOLLOWS THE RETIREMENT OF

551
00:23:23,880 --> 00:23:25,840
DR. CARMEN BREWER IN OCTOBER OF

552
00:23:25,840 --> 00:23:30,320
2022. AND I WANT TO EXPRESS MY

553
00:23:30,320 --> 00:23:31,880
EXTREME GRATITUDE TO DR.

554
00:23:31,880 --> 00:23:34,440
CHRISTOPHER ZALENSKY AND DR.

555
00:23:34,440 --> 00:23:36,680
JULIE CHRISTIANSON WHO SERVED AS

556
00:23:36,680 --> 00:23:39,360
ACTING CO-CHIEF RESEARCH

557
00:23:39,360 --> 00:23:44,840
AUDIOLOGISTS SINCE THAT TIME. SO

558
00:23:44,840 --> 00:23:50,000
YOU HAVE HEARD IN THE PAST FROM

559
00:23:50,000 --> 00:23:51,280
OUR FIRST CHIEF DIVERSITY

560
00:23:51,280 --> 00:23:53,200
OFFICER DR. ROBINSON. SHE HAD A

561
00:23:53,200 --> 00:23:58,440
VERY BUSY YEAR SO THIS MARKS ONE

562
00:23:58,440 --> 00:24:02,080
YEAR SINCE JOINING THE INSTITUTE

563
00:24:02,080 --> 00:24:04,120
AND BUSY AND PRODUCTIVE. SO

564
00:24:04,120 --> 00:24:08,200
SHE'S HELPED TO COORDINATE IN

565
00:24:08,200 --> 00:24:11,400
SEVERAL EFFORTS, ONE HAS BEEN

566
00:24:11,400 --> 00:24:13,000
FOR PARTICIPATION IN HELPING US

567
00:24:13,000 --> 00:24:15,800
TO IDENTIFY THE BEST

568
00:24:15,800 --> 00:24:18,680
OPPORTUNITIES TO ADVANCE SCIENCE

569
00:24:18,680 --> 00:24:20,680
IN OUR IN NOTICES OF FUNDING

570
00:24:20,680 --> 00:24:21,920
OPPORTUNITIES. SO WE PARTNERED

571
00:24:21,920 --> 00:24:25,240
WITH THE UNITE INITIATIVE ON

572
00:24:25,240 --> 00:24:27,800
SOME OF THESE. SHE ALSO HELPED

573
00:24:27,800 --> 00:24:32,600
PROMOTE THE NIDCD DEIA FOCUSED

574
00:24:32,600 --> 00:24:34,840
FUNDING OPPORTUNITIES SUCH AS

575
00:24:34,840 --> 00:24:36,160
RESENT RO1 FOR NEW INVESTIGATORS

576
00:24:36,160 --> 00:24:38,600
TO PROMOTE WORK FORCE DIVERSITY

577
00:24:38,600 --> 00:24:41,040
AND THE NIDCD HEALTH DISPARITIES

578
00:24:41,040 --> 00:24:47,240
INHE INEQUITIES RESEARCH PROGRAE

579
00:24:47,240 --> 00:24:49,760
HAS DONE A GREAT DEAL OF WORK

580
00:24:49,760 --> 00:24:51,040
WITH OUR INTERNAL WORK FORCE, SO

581
00:24:51,040 --> 00:24:55,640
SHE'S BEEN PART OF OUR INTERNAL

582
00:24:55,640 --> 00:24:58,440
WORKING GROUP THAT HAS ADDRESSED

583
00:24:58,440 --> 00:25:00,640
ISSUES OF DIVERSITY EQUITY

584
00:25:00,640 --> 00:25:01,800
INCLUSION AND ACCESSIBILITY,

585
00:25:01,800 --> 00:25:04,360
THAT IS A VERY ACTIVE PROGRAM

586
00:25:04,360 --> 00:25:07,080
ACROSS THE INSTITUTE INVOLVING

587
00:25:07,080 --> 00:25:08,360
ALL STAFF MEMBERS WHO WANT TO

588
00:25:08,360 --> 00:25:12,000
PARTICIPATE.  SO IT IS A VERY

589
00:25:12,000 --> 00:25:13,800
ROBUST EFFORT. LAST SHE

590
00:25:13,800 --> 00:25:16,360
PARTICIPATED IN A LARGE NUMBER

591
00:25:16,360 --> 00:25:18,360
OF CONFERENCES TO MAKE SURE THAT

592
00:25:18,360 --> 00:25:20,920
THE SCIENTIFIC COMMUNITY

593
00:25:20,920 --> 00:25:24,960
PARTICULARLY THOSE WHO ARE

594
00:25:24,960 --> 00:25:26,960
UNDER-REPRESENTED AND LESS

595
00:25:26,960 --> 00:25:29,840
LIKELY TO BE PLUGGED IN TO THE

596
00:25:29,840 --> 00:25:31,600
RESEARCH TRAINING AND MENTORING

597
00:25:31,600 --> 00:25:33,040
INFRASTRUCTURE TO LET THEM KNOW

598
00:25:33,040 --> 00:25:37,800
ABOUT THE PROGRAMS THAT NIDCD

599
00:25:37,800 --> 00:25:39,040
HAS SHE PRESENTED AT NUMBER OF

600
00:25:39,040 --> 00:25:40,560
CONFERENCES INCLUDING A

601
00:25:40,560 --> 00:25:42,200
CONFERENCE WITH NETWORK FOR

602
00:25:42,200 --> 00:25:44,760
BLACK INDIGENOUS AN PERSONS OF

603
00:25:44,760 --> 00:25:46,240
COLOR, RESEARCHERS AND

604
00:25:46,240 --> 00:25:46,920
CLINICIANS AND COMMUNICATIONS

605
00:25:46,920 --> 00:25:50,480
SCIENCES AND DISORDERS, THE

606
00:25:50,480 --> 00:25:52,040
NATIONAL BLACK ASSOCIATION NOR

607
00:25:52,040 --> 00:25:55,840
SPEECH LANGUAGE AND HEARING. SHE

608
00:25:55,840 --> 00:25:59,040
PRESENTED AT THE AUDITORY

609
00:25:59,040 --> 00:26:02,800
AMERICAN ODDTORY SOCIETY MEETING

610
00:26:02,800 --> 00:26:06,000
LAST MARCH, ALSO DONE ONLINE

611
00:26:06,000 --> 00:26:07,800
COFFEE HOUR FOR THE DIVERSITY

612
00:26:07,800 --> 00:26:09,600
AND MINORITY EXPAND COMMITTEE.

613
00:26:09,600 --> 00:26:11,920
SO WE ARE REALLY GRATEFUL FOR

614
00:26:11,920 --> 00:26:14,120
HER WORK THAT SHE'S BEEN

615
00:26:14,120 --> 00:26:18,000
DELIGHTFUL TO WORK WITH. AS PART

616
00:26:18,000 --> 00:26:21,080
OF OUR PLANS TO FURTHER EDUCATE

617
00:26:21,080 --> 00:26:22,680
THE RESEARCH COMMUNITY AS WELL

618
00:26:22,680 --> 00:26:25,360
AS PROMOTE OUR STRATEGIC PLAN

619
00:26:25,360 --> 00:26:27,720
THAT WAS RELEASED AT THE END OF

620
00:26:27,720 --> 00:26:30,640
LAST YEAR, WE HAVE STARTED A

621
00:26:30,640 --> 00:26:33,360
NIDCD DIRECTOR SEMINAR SERIES

622
00:26:33,360 --> 00:26:36,360
AND THE FIRST SEMINAR IN THIS

623
00:26:36,360 --> 00:26:40,200
SERIES WAS IN LATE JUNE. THAT

624
00:26:40,200 --> 00:26:43,440
WAS ROD CALIFF COMMISSIONER FDA

625
00:26:43,440 --> 00:26:45,040
WHO SPOKE WITH US ABOUT

626
00:26:45,040 --> 00:26:48,880
TECHNOLOGIES AND OTHER VOIR DIRE

627
00:26:48,880 --> 00:26:51,600
VANCES RELATED TO NIDCD MISSION

628
00:26:51,600 --> 00:26:53,640
AREAS IN THE WAY WE DEVELOP THAT

629
00:26:53,640 --> 00:26:54,720
SEMINAR WAS TO HAVE HIM SPEAK

630
00:26:54,720 --> 00:26:57,400
FOR A PERIOD OF TIME THEN

631
00:26:57,400 --> 00:27:02,920
INVITED DISCUSSANS ACROSS NIH TO

632
00:27:02,920 --> 00:27:03,960
PARTICIPATE AND ASK QUESTIONS

633
00:27:03,960 --> 00:27:06,000
AND HAVE DISCUSSION WITH HIM AND

634
00:27:06,000 --> 00:27:10,200
THAT WAS A SUCCESSFUL AND WELL

635
00:27:10,200 --> 00:27:13,880
RECEIVED SEMINAR SO WE DECIDED

636
00:27:13,880 --> 00:27:15,200
TO CONTINUE ALONG IN THE SAME

637
00:27:15,200 --> 00:27:20,760
WAY TO INCLUDE SOME DISCUSSION

638
00:27:20,760 --> 00:27:22,280
AFTER THE PRESENTATION. THE NEXT

639
00:27:22,280 --> 00:27:24,760
PRESENTATION WHICH WILL BE

640
00:27:24,760 --> 00:27:26,400
OCTOBER 25TH IS A HYBRID

641
00:27:26,400 --> 00:27:29,480
LECTURE. OPEN TO NIH STAFF,

642
00:27:29,480 --> 00:27:30,600
EXTRAMURAL RESEARCHERS AND THE

643
00:27:30,600 --> 00:27:34,760
PUBLIC. DR. ADAM RESNICK

644
00:27:34,760 --> 00:27:36,480
DIRECTOR OF THE CENTER FOR DATA

645
00:27:36,480 --> 00:27:38,280
DRIVEN DISCOVERY AND BIOMEDICINE

646
00:27:38,280 --> 00:27:41,360
AT THE CHILDREN'S HOSPITAL

647
00:27:41,360 --> 00:27:43,120
PHILADELPHIA WILL BE SPEAKING

648
00:27:43,120 --> 00:27:44,800
AND HIS TALK IS ENTITLED FROM

649
00:27:44,800 --> 00:27:46,800
DATA SETS TO DATA PLATFORMS TO

650
00:27:46,800 --> 00:27:49,400
DATA ECOSYSTEMS. THE EMERGING

651
00:27:49,400 --> 00:27:51,920
LANDSCAPE OF COLLABORATIVE CROSS

652
00:27:51,920 --> 00:27:53,920
DISEASE DISCOVERY AND

653
00:27:53,920 --> 00:27:55,040
ACCELERATED CLINICAL

654
00:27:55,040 --> 00:27:57,040
TRANSLATION. SO THIS VERY MUCH

655
00:27:57,040 --> 00:28:01,600
FITS IN WITH HER OUR STRATEGIC

656
00:28:01,600 --> 00:28:04,960
PLAN, PRECISION MEDICINE AS WELL

657
00:28:04,960 --> 00:28:05,960
AS BIOMEDICAL DATA SCIENCE. WE

658
00:28:05,960 --> 00:28:09,320
HAVE INVITED DISCUSSANTS, THE

659
00:28:09,320 --> 00:28:13,760
DISCUSSION WILL BE LED BY DR.

660
00:28:13,760 --> 00:28:15,720
GIBBSBURG DIRECT FOR FOR ALL OF

661
00:28:15,720 --> 00:28:18,800
US RESEARCH PROGRAM. DR. JOSH

662
00:28:18,800 --> 00:28:20,240
LEVY CLINICAL DIRECTOR WILL

663
00:28:20,240 --> 00:28:21,920
PARTICIPATE AS WELL AS OTHER

664
00:28:21,920 --> 00:28:23,400
DISCUSSANTS. SO I'M VERY MUCH

665
00:28:23,400 --> 00:28:26,840
LOOKING FORWARD TO THAT AS AN

666
00:28:26,840 --> 00:28:28,800
EXCITING AND VIBRANT SEMINAR AND

667
00:28:28,800 --> 00:28:34,720
DISCUSSION.  SO ENDING WITH

668
00:28:34,720 --> 00:28:38,280
TODAY'S AGENDA, WE WILL HAVE

669
00:28:38,280 --> 00:28:41,040
PRESENTATIONS ON DATA SHARING

670
00:28:41,040 --> 00:28:44,040
AND DATA SCIENCE FOLLOWED BY A

671
00:28:44,040 --> 00:28:46,160
PRESENTATION BY DR. KELLEY KING

672
00:28:46,160 --> 00:28:49,960
ON MEANINGFUL OUTCOME MEASURES

673
00:28:49,960 --> 00:28:53,880
AND ADULTS WITH HEALTHCARES WE

674
00:28:53,880 --> 00:28:55,200
THE NATIONAL ACADEMY OF

675
00:28:55,200 --> 00:28:58,040
MEDICINE. WE WILL THEN HEAR FROM

676
00:28:58,040 --> 00:29:01,480
DR. VALENTINA PARMA WHO WILL BE

677
00:29:01,480 --> 00:29:03,440
SPEAKING ON FROM PANDEMIC TO

678
00:29:03,440 --> 00:29:05,040
PRACTICE, COVID-19 AND THE CASE

679
00:29:05,040 --> 00:29:07,640
FOR UNIVERSAL TESTING AND THEN

680
00:29:07,640 --> 00:29:08,800
WE WILL HAVE THE OPPORTUNITY TO

681
00:29:08,800 --> 00:29:16,440
HEAR A FEW WORDS FROM RETIRING

682
00:29:16,440 --> 00:29:18,400
HELPFUL NUMBERS. NEXT I WOULD

683
00:29:18,400 --> 00:29:26,440
LIKE TO INVITE TO THE PODIUM OUR

684
00:29:26,440 --> 00:29:31,320
NEXT SPEAKER. AND ANUP MAHURKAR,

685
00:29:31,320 --> 00:29:32,880
DIRECTOR OF SOFTWARE ENGINEERING

686
00:29:32,880 --> 00:29:34,160
AND TECHNOLOGY AT THE UNIVERSITY

687
00:29:34,160 --> 00:29:35,680
OF MARCH MARE INSTITUTE FOR

688
00:29:35,680 --> 00:29:38,120
GENOME SCIENCES. HE HAS

689
00:29:38,120 --> 00:29:39,160
EXTENSIVE EXPERIENCE IN THE

690
00:29:39,160 --> 00:29:42,560
FIELD OF GENOMICS AND HEALTH

691
00:29:42,560 --> 00:29:44,520
SCIENCES AND HIS AREAS OF

692
00:29:44,520 --> 00:29:47,360
EXPERTISE INCLUDE BIOINFORMATICS

693
00:29:47,360 --> 00:29:49,480
TOOL DEVELOPMENT LARGE SCALE

694
00:29:49,480 --> 00:29:52,360
ANALYSIS SYSTEMS, INNOVATES

695
00:29:52,360 --> 00:29:53,640
DESIGN AND HIGH THROUGH PUT

696
00:29:53,640 --> 00:29:55,560
COMPUTING ARCHITECTURE AND

697
00:29:55,560 --> 00:29:59,880
APPLICATION DEVELOPMENT.

698
00:29:59,880 --> 00:30:02,320
MR. MAHURKAR HAS BEEN REALLY

699
00:30:02,320 --> 00:30:05,080
VITALLY IMPORTANT TO OUR MAY

700
00:30:05,080 --> 00:30:06,920
SENT EFFORTS TO THINK ABOUT WHAT

701
00:30:06,920 --> 00:30:09,920
KINDS OF DATA SCIENCE RESOURCES

702
00:30:09,920 --> 00:30:13,040
WE NEED AT NIDCD, HE'S BEEN

703
00:30:13,040 --> 00:30:15,920
CONSULTANT FOR US FOR THE PAST

704
00:30:15,920 --> 00:30:18,680
YEAR AT LEAST AND HE'S BEEN

705
00:30:18,680 --> 00:30:20,120
CONSULTING WITH ME DIRECTLY AND

706
00:30:20,120 --> 00:30:22,480
ALSO WORKING WITH DR. LISA

707
00:30:22,480 --> 00:30:25,760
CUNNINGHAM AND HER GROUP IN THE

708
00:30:25,760 --> 00:30:27,560
INTRAMURAL RESEARCH PROGRAMS TO

709
00:30:27,560 --> 00:30:29,880
HELP THEM IN THEIR APPROACHES TO

710
00:30:29,880 --> 00:30:33,520
DATA SHARING. SO ENORMOUSLY

711
00:30:33,520 --> 00:30:36,800
GRATEFUL TO HIM FOR HIS ADVICE

712
00:30:36,800 --> 00:30:40,400
AND IN LINE LOOK FORWARD TO HIS

713
00:30:40,400 --> 00:30:42,880
COMMENT. AFTER THOSE COMMENTS WE

714
00:30:42,880 --> 00:30:46,200
WILL HEAR FROM DR. LU WANG,

715
00:30:46,200 --> 00:30:48,920
CHIEF OF NIDCR EXTRAMURAL

716
00:30:48,920 --> 00:30:52,600
TRANSLATIONAL GENOMICS RESEARCH

717
00:30:52,600 --> 00:30:54,560
BRANCH. HER BRANCH OVERSEES

718
00:30:54,560 --> 00:30:56,240
FUNDING PROGRAMS SUPPORTING

719
00:30:56,240 --> 00:30:58,800
TRANSLATIONAL GENOMICS AND

720
00:30:58,800 --> 00:31:00,120
GENETICS. DATA SCIENCE AND

721
00:31:00,120 --> 00:31:03,200
DEVELOPMENTAL BIOLOGY RESEARCH

722
00:31:03,200 --> 00:31:07,960
AND PRODUCT DEVELOPMENT. DR. RON

723
00:31:07,960 --> 00:31:10,240
LEADS DATA SCIENCE INITIATIVES

724
00:31:10,240 --> 00:31:11,160
AT NIDCR DENTAL INSTITUTE IN

725
00:31:11,160 --> 00:31:13,440
ORDER TO EXPEDITE TRANSLATIONAL

726
00:31:13,440 --> 00:31:17,040
RESEARCH. SHE ALSO CHAIRS NIDCR

727
00:31:17,040 --> 00:31:18,280
DATA ACCESS COMMITTEES THAT

728
00:31:18,280 --> 00:31:20,520
MANAGE PUBLIC ACCESS TO THE

729
00:31:20,520 --> 00:31:22,240
GENOMIC AND PHENOTYPIC DATA FOR

730
00:31:22,240 --> 00:31:25,680
USE BY NIDCR FUNDED RESEARCHERS 

731
00:31:25,680 --> 00:31:29,800
SO WE WILL HEAR FROM HER

732
00:31:29,800 --> 00:31:32,360
VIRTUALLY AND LOOK FORWARD TO

733
00:31:32,360 --> 00:31:34,160
HEARING FROM YOU ANUP. THANK

734
00:31:34,160 --> 00:31:38,080
YOU.

735
00:31:38,080 --> 00:31:41,560
>>THANK YOU CAN YOU HEAR
ME?

736
00:31:41,560 --> 00:31:50,920
YEAH? HOW ABOUT NOW? HOW ABOUT

737
00:31:50,920 --> 00:32:01,400
NOW? SEE IF I CAN PROJECT MY

738
00:32:11,440 --> 00:32:13,000
VOICE. DR. TUCCI, THANK YOU FOR

739
00:32:13,000 --> 00:32:15,240
INVITING ME TO SPEAK TO THE

740
00:32:15,240 --> 00:32:18,120
ADVISORY BOARD AND MEMBERS OF

741
00:32:18,120 --> 00:32:22,440
THE BOARD (INAUDIBLE) LITTLE

742
00:32:22,440 --> 00:32:27,200
BACKGROUND SUGGEST LEVELS THAT

743
00:32:27,200 --> 00:32:28,240
(INAUDIBLE) A LITTLE BACKGROUND

744
00:32:28,240 --> 00:32:31,200
WHAT I DO, HEALTHCARE TO

745
00:32:31,200 --> 00:32:32,960
UNDERSTAND WHERE I HAVE BEEN

746
00:32:32,960 --> 00:32:34,800
COMING FROM. I HAVE BEEN IN THE

747
00:32:34,800 --> 00:32:36,480
BIOMEDICAL RESEARCH FIELD FOR 30

748
00:32:36,480 --> 00:32:37,840
YEARS AND (INAUDIBLE) ABOUT 35

749
00:32:37,840 --> 00:32:39,240
YEARS. DOING THE SCIENCE PUTTING

750
00:32:39,240 --> 00:32:41,560
IN THE LAST TEN YEARS WHAT HAS

751
00:32:41,560 --> 00:32:43,120
BEEN DOING AT THE UNIVERSITY OF

752
00:32:43,120 --> 00:32:45,240
MARYLAND IS TO TRY REPOSITORIES

753
00:32:45,240 --> 00:32:47,680
FOR BIOMEDICAL DATA (INAUDIBLE)

754
00:32:47,680 --> 00:32:49,480
GENOMIC DATA. THAT'S THE

755
00:32:49,480 --> 00:32:55,000
BACKGROUND FROM -- THAT'S MY BIO

756
00:32:55,000 --> 00:32:57,000
SO JUST TO BE AWARE OF IT.

757
00:32:57,000 --> 00:32:58,800
(INAUDIBLE) REPOSITORY FOR THE

758
00:32:58,800 --> 00:33:04,000
BRAIN INITIATIVE, AND THE OTHER

759
00:33:04,000 --> 00:33:06,240
PROJECT COMMON FUND HAS PROJECT

760
00:33:06,240 --> 00:33:08,160
IN THE FUNDING ECOSYSTEM TRYING

761
00:33:08,160 --> 00:33:11,960
TO BUILD ECOSYSTEM OF ANOTHER

762
00:33:11,960 --> 00:33:13,680
DIFFERENT DATA FORMATION CENTERS

763
00:33:13,680 --> 00:33:20,600
WHO MANAGE (INAUDIBLE). -WILL

764
00:33:20,600 --> 00:33:25,200
ALSO GO WITH WHAT DR. RESNICK

765
00:33:25,200 --> 00:33:26,880
WILL TALK TO YOU ABOUT IN

766
00:33:26,880 --> 00:33:28,280
OCTOBER. SO THE FIRST PART IS

767
00:33:28,280 --> 00:33:30,040
THREE TALKS. THE FIRST IS A

768
00:33:30,040 --> 00:33:31,200
LITTLE BACKGROUND WITH HISTORY

769
00:33:31,200 --> 00:33:33,520
OF NIH AND HOW THAT IS WITH WHAT

770
00:33:33,520 --> 00:33:35,240
WE DO TODAY.  THE SECOND PART IS

771
00:33:35,240 --> 00:33:36,480
GIVES YOU A FLAVOR OF THE

772
00:33:36,480 --> 00:33:38,720
DIFFERENT MODEL PEOPLE HAVE IN

773
00:33:38,720 --> 00:33:39,520
DIFFERENT (INAUDIBLE) FOR HOW TO

774
00:33:39,520 --> 00:33:42,600
SHARE THE DATA BECAUSE THAT'S

775
00:33:42,600 --> 00:33:45,480
RESPONDING TO THE MANDATE OF

776
00:33:45,480 --> 00:33:48,240
DATA SHARING. TO HAVE A

777
00:33:48,240 --> 00:33:50,000
SUCCESSFUL DATA REPOSITORY DATA

778
00:33:50,000 --> 00:33:51,480
STANDARD ARE VERY CRITICAL. SO

779
00:33:51,480 --> 00:33:53,480
I'LL TALK A LITTLE BIT ABOUT THE

780
00:33:53,480 --> 00:33:56,600
DATA STANDARD AND HOW THOSE

781
00:33:56,600 --> 00:33:57,680
ININFLUENCE HOW WE SHARE THE

782
00:33:57,680 --> 00:33:59,680
DATA. SO WHAT IS DATA SHARING.

783
00:33:59,680 --> 00:34:00,720
THIS IS COPY FROM THE NIH

784
00:34:00,720 --> 00:34:02,840
WEBSITE BUT IT IS THE ACT OF

785
00:34:02,840 --> 00:34:04,040
MAKING SCIENTIFIC DATA AVAILABLE

786
00:34:04,040 --> 00:34:09,760
FOR USE BY OTHERS, ESTABLISH

787
00:34:09,760 --> 00:34:15,800
REPOSITOREPOSITORY. SO THAT'S TE

788
00:34:15,800 --> 00:34:18,000
IMPORTANT PART. AND SO THE

789
00:34:18,000 --> 00:34:22,280
EPIPUT FOR DATA SHARING CAN BE

790
00:34:22,280 --> 00:34:24,040
TWO PERSPECTIVES.  ONE IS

791
00:34:24,040 --> 00:34:25,280
DEVELOPED BY SCIENCE. AND SO

792
00:34:25,280 --> 00:34:26,200
WHAT THE SCIENTIFIC REASONS FOR

793
00:34:26,200 --> 00:34:27,280
SHARING DATA AND THE SECOND IS

794
00:34:27,280 --> 00:34:30,800
POLICY DECISIONS.S.  SO FROM A

795
00:34:30,800 --> 00:34:31,720
SCIENTIFIC SIDE FIRST

796
00:34:31,720 --> 00:34:32,640
(INAUDIBLE) ESSENTIALLY NEED TO

797
00:34:32,640 --> 00:34:36,920
HAVE THE DATA AVAILABLE

798
00:34:36,920 --> 00:34:39,120
(INAUDIBLE) YOUR FINDINGS.

799
00:34:39,120 --> 00:34:41,560
PRIMARY DRIVERS OF THE DATA

800
00:34:41,560 --> 00:34:44,920
SHARING, THE SECOND ONE IS LOT

801
00:34:44,920 --> 00:34:46,280
OF RESEARCH IS BEING DONE BY

802
00:34:46,280 --> 00:34:48,320
PUBLIC FUNDING SO THE IDEA THAT

803
00:34:48,320 --> 00:34:49,920
YOU WANT TO RESPOND TO PUBLIC

804
00:34:49,920 --> 00:34:51,840
FUNDING AND MAKE THE DATA

805
00:34:51,840 --> 00:34:55,280
AVAILABLE TO THE WIDER PUBLIC TO

806
00:34:55,280 --> 00:35:02,880
REVIEW IT. THIRD POTENTIALLY --

807
00:35:02,880 --> 00:35:04,440
GENERATING TREMENDOUS BACKGROUND

808
00:35:04,440 --> 00:35:06,560
TYPICAL FOCUS OF RESEARCH TENDS

809
00:35:06,560 --> 00:35:08,800
TO BE VERY NARROW HYPOTHESIS

810
00:35:08,800 --> 00:35:10,000
(INAUDIBLE) OTHERS CAN USE THE

811
00:35:10,000 --> 00:35:11,240
DATA FOR OTHER REASONS AND THAT

812
00:35:11,240 --> 00:35:12,320
IS WHY MAKING IT VAIL TO BELIEVE

813
00:35:12,320 --> 00:35:15,960
THE WIDER COMMUNITY IS

814
00:35:15,960 --> 00:35:18,520
IMPORTANT. NEXT WOULD BE FOR

815
00:35:18,520 --> 00:35:20,280
ALLOWING DATA REPORTING AND

816
00:35:20,280 --> 00:35:21,920
PARTICULARLY TODAY'S DAY AND AGE

817
00:35:21,920 --> 00:35:23,280
WHERE ARTIFICIAL INTELLIGENCE

818
00:35:23,280 --> 00:35:25,080
AND MACHINE LEARNING ARE SORT OF

819
00:35:25,080 --> 00:35:26,280
ABOUT TO TAKE OFF, IT'S

820
00:35:26,280 --> 00:35:28,320
IMPORTANT TO HAVE LARGE UNBIASED

821
00:35:28,320 --> 00:35:29,600
DATA SETS WE CAN PLAY OUR MODELS

822
00:35:29,600 --> 00:35:31,280
ON AND FOR THAT REASON WE WANTED

823
00:35:31,280 --> 00:35:33,800
TO MAKE IT EASY TO PULL EXISTING

824
00:35:33,800 --> 00:35:35,280
DATA BECAUSE PERSPECTIVE DATA

825
00:35:35,280 --> 00:35:37,160
COLLECTION IS PRETTY EXPENSIVE

826
00:35:37,160 --> 00:35:39,680
SO LEVERAGE WHAT'S ALREADY BEING

827
00:35:39,680 --> 00:35:41,120
DONE AND TO POOL THE DATA SHARE

828
00:35:41,120 --> 00:35:47,480
THE DATA SO WE CAN PULL IT.  WE

829
00:35:47,480 --> 00:35:49,480
ALSO LOWERED THE COST,

830
00:35:49,480 --> 00:35:52,680
(INAUDIBLE) SO WE CAN REUSE IT.

831
00:35:52,680 --> 00:35:54,720
OVERALL REDUCING THE COST OF

832
00:35:54,720 --> 00:35:55,600
RESEARCH AND THAT'S ART

833
00:35:55,600 --> 00:35:57,840
IMPORTANT FACTOR FROM A CENTERED

834
00:35:57,840 --> 00:36:01,520
PERSPECTIVE TO LOWER THE NEW

835
00:36:01,520 --> 00:36:03,360
DISCOVERY. OF COURSE WE KNOW

836
00:36:03,360 --> 00:36:04,800
PUBLICATIONS THAT REQUIRE US TO

837
00:36:04,800 --> 00:36:06,920
SHARE THE DATA SO THAT IS

838
00:36:06,920 --> 00:36:08,600
ESSENTIALLY BECOMES THE CURRENT

839
00:36:08,600 --> 00:36:10,360
INPUT AS FAR AS TO SHARE THE

840
00:36:10,360 --> 00:36:11,400
DATA. AND FINALLY TREATING THE

841
00:36:11,400 --> 00:36:14,120
NEXT GENERATION OF DATA

842
00:36:14,120 --> 00:36:15,480
SCIENTISTS THEY NEED A CONCEPT

843
00:36:15,480 --> 00:36:19,480
WHICH THEY CAN LEARN AND APPLY

844
00:36:19,480 --> 00:36:20,720
TECHNOLOGIES THAT IS THE REASON

845
00:36:20,720 --> 00:36:22,160
WHY YOU WANT TO ESSENTIALLY HAVE

846
00:36:22,160 --> 00:36:23,960
DATA SHARING POLICY AND MAKE

847
00:36:23,960 --> 00:36:25,520
DATA AVAILABLE TO THE WIDER

848
00:36:25,520 --> 00:36:28,400
SCIENTIFIC COMMUNITY. SO JUST A

849
00:36:28,400 --> 00:36:31,120
I WILL BIT FROM A SCIENTIFIC

850
00:36:31,120 --> 00:36:34,440
POLICY IMPETUS.  BACK IN 2003,

851
00:36:34,440 --> 00:36:36,320
IS WHEN THE FIRST DATA SHARING

852
00:36:36,320 --> 00:36:38,840
POLICY FROM NIH WENT INTO

853
00:36:38,840 --> 00:36:43,040
EFFECT. IT ACTED MOSTLY LARGE

854
00:36:43,040 --> 00:36:45,120
GRANTS, GRANTS WITH AT LEAST

855
00:36:45,120 --> 00:36:47,160
$500,000 IN DIRECT FUNDING IN A

856
00:36:47,160 --> 00:36:48,640
SINGLE YEAR WHICH MEANS THAT

857
00:36:48,640 --> 00:36:51,240
MOST RO1 FUNDING WAS EXEMPT FROM

858
00:36:51,240 --> 00:36:54,520
THIS DATA SHARING REQUIREMENT IN

859
00:36:54,520 --> 00:36:58,080
2003. (INAUDIBLE) HAVE THEIR OWN

860
00:36:58,080 --> 00:37:00,320
POLICIES AND REQUIRED PEOPLE TO

861
00:37:00,320 --> 00:37:01,720
SHARE THE DATA AND PUBLICATIONS

862
00:37:01,720 --> 00:37:04,840
BUT THERE WASN'T NECESSARILY NIH

863
00:37:04,840 --> 00:37:06,000
MANDATE TO SHARE THE DATA IN

864
00:37:06,000 --> 00:37:08,240
2003. IN 2015 THIS WAS FOR

865
00:37:08,240 --> 00:37:09,720
FOLLOWED WITH WHAT'S THE GENOMIC

866
00:37:09,720 --> 00:37:10,960
DATA SHARING POLICY AND THIS

867
00:37:10,960 --> 00:37:13,400
POLICY WAS THE FIRST IN THESE

868
00:37:13,400 --> 00:37:17,880
DAYS GENERATING GENOMIC

869
00:37:17,880 --> 00:37:19,280
SEQUENCES WASNESS PENSIVE SO

870
00:37:19,280 --> 00:37:21,160
THIS (INAUDIBLE) AND IT REQUIRED

871
00:37:21,160 --> 00:37:24,120
THAT ALL NIH FUNDED RESEARCH

872
00:37:24,120 --> 00:37:26,920
LARGE HUMAN OR NON-HUMAN GENOMIC

873
00:37:26,920 --> 00:37:30,640
DATA REQUIRED TO SHARE THE DATA

874
00:37:30,640 --> 00:37:32,000
AND (INAUDIBLE) OF FUNDING

875
00:37:32,000 --> 00:37:34,080
CRITERIA, BUT THE GENERAL

876
00:37:34,080 --> 00:37:35,320
GUIDELINES FOR SAY YOU ARE

877
00:37:35,320 --> 00:37:38,720
WORKING ONE GENE OR REGION

878
00:37:38,720 --> 00:37:39,760
COUPLE OF THOUSANDS PARTICIPANTS

879
00:37:39,760 --> 00:37:40,800
AND YOU ARE REQUIRED TO SHARE

880
00:37:40,800 --> 00:37:43,160
YOUR DATA. SO THAT'S (INAUDIBLE)

881
00:37:43,160 --> 00:37:46,800
TO SHARE THE DATA. WORKING WITH

882
00:37:46,800 --> 00:37:49,400
THE WHOLE GENOME WHICH CASE MORE

883
00:37:49,400 --> 00:37:50,160
THAN 100 PARTICIPANTS REQUIRED

884
00:37:50,160 --> 00:37:52,360
TO SHARE YOUR DATA. SO MOST

885
00:37:52,360 --> 00:37:57,080
PEOPLE TOOK A VERY PROACTIVE

886
00:37:57,080 --> 00:37:58,240
APPROACH AND FROM THE GENOMIC

887
00:37:58,240 --> 00:38:00,240
FIELD WE ARE SHARING DATA FOR A

888
00:38:00,240 --> 00:38:02,480
LONG TIME AND THIS IS FUNDED --

889
00:38:02,480 --> 00:38:04,080
BY NATIONAL LIBRARY OF MEDICINE

890
00:38:04,080 --> 00:38:06,120
BECAUSE NCBI IS THE GENOMIC

891
00:38:06,120 --> 00:38:10,720
DATA. SO WE SHARING DATA FOR

892
00:38:10,720 --> 00:38:13,360
MUCH MORE THAN BACK IN 2015 BUT

893
00:38:13,360 --> 00:38:15,720
THE POLICY WENT INTO EFFECT IN

894
00:38:15,720 --> 00:38:17,720
2015. FOR THE INDIVIDUAL IT IS

895
00:38:17,720 --> 00:38:19,600
MORE RESTRICTIONS POLICIES ABOUT

896
00:38:19,600 --> 00:38:22,840
DATA SHARING WHETHER IT'S PRIEF

897
00:38:22,840 --> 00:38:24,400
TO SHARE THE RESEARCHERS TO

898
00:38:24,400 --> 00:38:25,240
REQUIRE TO SHARE THE DATA

899
00:38:25,240 --> 00:38:29,040
WIDELY. SO THIS YEAR ANOTHER NEW

900
00:38:29,040 --> 00:38:30,520
POLICY WENT INTO EFFECT THAT'S

901
00:38:30,520 --> 00:38:32,040
AFFECTING A LOT OF RESEARCHERS

902
00:38:32,040 --> 00:38:34,960
AND THIS REQUIRES ALL RESEARCH

903
00:38:34,960 --> 00:38:37,080
CONDUCTED IN WHOLE OR PART BY

904
00:38:37,080 --> 00:38:37,920
NIH THAT RESULTS IN THE

905
00:38:37,920 --> 00:38:39,200
GENERATION OF SCIENTIFIC DATA

906
00:38:39,200 --> 00:38:41,640
NEEDS TO BE SHARED.  AND WHAT IT

907
00:38:41,640 --> 00:38:44,960
MEANS IS THIS INCLUDES RESEARCH

908
00:38:44,960 --> 00:38:46,880
FUNDING CONDUCTED BY EXTRAMURAL

909
00:38:46,880 --> 00:38:48,520
GRANTS, CONTRACTS, INTRAMURAL

910
00:38:48,520 --> 00:38:50,400
RESEARCH AND FUND AGREEMENTS

911
00:38:50,400 --> 00:38:51,640
REGARDLESSLESS OF FUNDING LEVEL

912
00:38:51,640 --> 00:38:53,360
OR MECHANISM SO THAT IS

913
00:38:53,360 --> 00:38:54,360
SOMETHING NEW. WE HAVE ARE

914
00:38:54,360 --> 00:38:57,480
ALREADY IN THE GENOMIC FIELD

915
00:38:57,480 --> 00:39:01,040
APPLIED ON NIH RESEARCH AND IT

916
00:39:01,040 --> 00:39:01,600
ESTABLISHES PEGGATION FOR

917
00:39:01,600 --> 00:39:02,880
MAXIMIZING THE APPROPRIATE

918
00:39:02,880 --> 00:39:04,120
SHARING OF SCIENTIFIC DATA. THIS

919
00:39:04,120 --> 00:39:06,320
IS A LOT OF (INAUDIBLE) AROUND

920
00:39:06,320 --> 00:39:07,480
IT AND SOMETHING (INAUDIBLE) AND

921
00:39:07,480 --> 00:39:10,240
I DON'T THINK I'M IN A POSITION

922
00:39:10,240 --> 00:39:13,800
TO DISPEL THAT BUT WANTED TO

923
00:39:13,800 --> 00:39:15,440
HEAR THAT I HAVE HEARD LOTS OF

924
00:39:15,440 --> 00:39:16,600
WHEN I SPEAK TO PEOPLE THAT

925
00:39:16,600 --> 00:39:18,720
THERE'S A LOT OF CONFUSION WHAT

926
00:39:18,720 --> 00:39:21,080
NEEDS TO BE SHARED. SO WHEN WE

927
00:39:21,080 --> 00:39:22,200
LET'S START AT LEAST DISCUSSING

928
00:39:22,200 --> 00:39:23,480
WHAT IS THE SCIENTIFIC DATA SO

929
00:39:23,480 --> 00:39:25,680
ACCORDING TO THE OLD GUIDELINES

930
00:39:25,680 --> 00:39:27,200
THE DEFINITION OF SCIENTIFIC

931
00:39:27,200 --> 00:39:28,880
DATA IS RECORDED FACTUAL

932
00:39:28,880 --> 00:39:30,120
MATERIAL COMMONLY ACCEPTED IN

933
00:39:30,120 --> 00:39:31,120
THE SCIENTIFIC COMMUNITY AS

934
00:39:31,120 --> 00:39:31,920
SUFFICIENT QUALITY TO VALIDATE

935
00:39:31,920 --> 00:39:33,920
AND REPLICATE THE RESEARCH

936
00:39:33,920 --> 00:39:35,040
FINDINGS. REGARDLESS WHETHER

937
00:39:35,040 --> 00:39:37,920
THAT DATA ARE USED TO SUPPORT

938
00:39:37,920 --> 00:39:40,160
SCHOLARLY PUBLICATIONS.  SAY YOU

939
00:39:40,160 --> 00:39:41,080
ARE RUN AN EXPERIMENT AND

940
00:39:41,080 --> 00:39:43,880
THERE'S NO SIGNIFICANT FINDINGS

941
00:39:43,880 --> 00:39:45,640
YET TO BE PUBLISHED BY STILL

942
00:39:45,640 --> 00:39:46,960
USEFUL DATA SET. BEFORE THOSE

943
00:39:46,960 --> 00:39:48,120
PEOPLE WERE NOT REQUIRED TO

944
00:39:48,120 --> 00:39:50,880
SHARE THE DATA AND NOW IN THIS

945
00:39:50,880 --> 00:39:53,160
NEW POLICY YOU ARE EXPECTED TO

946
00:39:53,160 --> 00:39:57,000
SHARE THE DATA. AND THAT'S NEW

947
00:39:57,000 --> 00:39:58,000
SET UP AND DIFFERENCE BETWEEN

948
00:39:58,000 --> 00:39:59,320
WHAT WAS SHARED BEFORE AND WHAT

949
00:39:59,320 --> 00:40:01,000
IS BEING SHARED NOW. WHAT IS NOT

950
00:40:01,000 --> 00:40:03,760
REQUIRED TO BE SHARED, YOU DON'T

951
00:40:03,760 --> 00:40:06,840
NEED TO SHARE YOUR LAB NOTE

952
00:40:06,840 --> 00:40:10,840
BOOKS OR YOUR PRIMARY ANALYSIS,

953
00:40:10,840 --> 00:40:13,280
THE POLICIES NOBODY'S STOPS YOU

954
00:40:13,280 --> 00:40:15,400
FROM SHARING THAT, BUT IT'S NOT

955
00:40:15,400 --> 00:40:17,160
REQUIRED.  SO THESE ARE SOME OF

956
00:40:17,160 --> 00:40:18,400
THE THINGS THAT THE NEW POLICY

957
00:40:18,400 --> 00:40:20,200
DOES NOT REQUIRE TO SHARE. SO

958
00:40:20,200 --> 00:40:23,600
WHAT IS THE NEW DATA, SHARING

959
00:40:23,600 --> 00:40:25,960
POLICY, WHAT ARE SOME OF THE

960
00:40:25,960 --> 00:40:27,080
CONSIDERATIONS, MANAGEMENT HAS

961
00:40:27,080 --> 00:40:28,440
BEEN AROUND SINCE 2003 AND

962
00:40:28,440 --> 00:40:29,720
THERE'S BEEN INVESTMENT BY NIH

963
00:40:29,720 --> 00:40:34,000
AND OTHER AGENCIES ININCLINED TO

964
00:40:34,000 --> 00:40:37,800
MAKE DATA SHARING EASY. LOT OF

965
00:40:37,800 --> 00:40:39,080
RES ARETORIES HAVE BEEN BUILT TO

966
00:40:39,080 --> 00:40:41,440
RESPOND TO MANDATES. PART OF THE

967
00:40:41,440 --> 00:40:44,000
NATIONAL LIBRARY OF MEDICINE

968
00:40:44,000 --> 00:40:46,480
REPOSITORY AND AS OF YESTERDAY

969
00:40:46,480 --> 00:40:47,640
THERE WERE 138 SPECIALIZED

970
00:40:47,640 --> 00:40:49,440
REPOSITORIES THAT EXIST. THAT

971
00:40:49,440 --> 00:40:51,760
ARE FUNDED BY NIH THAT TAKE

972
00:40:51,760 --> 00:40:53,880
DIFFERENT TYPES OF (INAUDIBLE).

973
00:40:53,880 --> 00:40:56,560
SO THE (INAUDIBLE) UNDER

974
00:40:56,560 --> 00:40:57,480
PARTICULAR DATA YOU CAN PROBABLY

975
00:40:57,480 --> 00:41:01,360
FIND REPOSITORY THAT CAN TAKE

976
00:41:01,360 --> 00:41:03,000
THAT BACK (INAUDIBLE) IN

977
00:41:03,000 --> 00:41:04,800
ADDITION TO THE (INAUDIBLE)

978
00:41:04,800 --> 00:41:06,600
SPECIALIZED REPOSITORY THERE

979
00:41:06,600 --> 00:41:09,600
WERE NINE GENERALIST

980
00:41:09,600 --> 00:41:11,520
REPOSITORIES, PARTICULAR

981
00:41:11,520 --> 00:41:16,200
PROJECT. SO THE IDEA WE CAN

982
00:41:16,200 --> 00:41:17,520
LEARN FROM THESE PRACTICES IN A

983
00:41:17,520 --> 00:41:18,880
SINGLE REPOSITORY WHEN IT COMES

984
00:41:18,880 --> 00:41:21,360
TO HOW DO WE WANT (INAUDIBLE)

985
00:41:21,360 --> 00:41:31,920
NIDC TO SHARE THE DATA. SHARE

986
00:41:31,920 --> 00:41:34,520
WITH YOU COUPLE OF MODELS THAT

987
00:41:34,520 --> 00:41:36,600
EVOLVED THE LAST 10, 15 YEARS.

988
00:41:36,600 --> 00:41:38,320
HOW PEOPLE SHARE THE DATA, THESE

989
00:41:38,320 --> 00:41:41,880
ARE PRIMARILY DRIVEN BY THE IT

990
00:41:41,880 --> 00:41:43,400
AND ONE OF THE FUND MECHANISMS

991
00:41:43,400 --> 00:41:45,280
WERE AND WHAT PRIORITIES WERE SO

992
00:41:45,280 --> 00:41:47,520
THE SAME AMOUNT OF WORK IN NIH

993
00:41:47,520 --> 00:41:49,520
AND REPOSITORY THAT ARE STILL

994
00:41:49,520 --> 00:41:51,440
THE LAST SIX MONTHS, EIGHT

995
00:41:51,440 --> 00:41:53,080
MONTHS AND ALSO FROM A DIFFERENT

996
00:41:53,080 --> 00:41:56,080
BACKGROUND. SO WHEN I THINK

997
00:41:56,080 --> 00:41:58,440
ABOUT DATA PARTICULARLY USEFUL

998
00:41:58,440 --> 00:42:01,120
TOOL FOR ME AT LEAST IS TO THINK

999
00:42:01,120 --> 00:42:06,840
ABOUT THE EXDIKW PYRAMID. IT WAS

1000
00:42:06,840 --> 00:42:08,880
PUBLISHED IN 2007 BY -- SO THINK

1001
00:42:08,880 --> 00:42:11,280
ABOUT A PYRAMID WHERE THE

1002
00:42:11,280 --> 00:42:12,880
HIERARCHY WHERE THE DATA SITS ON

1003
00:42:12,880 --> 00:42:14,920
THE BOTTOM AND SLOWLY ADDING TO

1004
00:42:14,920 --> 00:42:16,680
THE DATA AS YOU TURNING IT INTO

1005
00:42:16,680 --> 00:42:17,840
INFORMATION AND THE INFORMATION

1006
00:42:17,840 --> 00:42:19,000
IS KNOWLEDGE AND KNOWLEDGE IS

1007
00:42:19,000 --> 00:42:21,520
WAS DOCUMENT WHICH IS HOPEFULLY

1008
00:42:21,520 --> 00:42:23,720
(INAUDIBLE) AT LEAST WITH THE

1009
00:42:23,720 --> 00:42:24,520
KNOWLEDGE MODELS COMPETING RIGHT

1010
00:42:24,520 --> 00:42:31,480
NOW. SO THINK ABOUT THE DIKW IT

1011
00:42:31,480 --> 00:42:33,600
HELPS TO LOOK AT EXAMPLES. IN

1012
00:42:33,600 --> 00:42:35,360
THE MOLECULAR BIOLOGY, WHEN YOU

1013
00:42:35,360 --> 00:42:37,080
THINK ABOUT DATA, THINK ABOUT

1014
00:42:37,080 --> 00:42:38,840
THE GENOME SEQUENCING, GENE

1015
00:42:38,840 --> 00:42:42,360
EXPRESSION. GENOMICS, PEOPLE'S

1016
00:42:42,360 --> 00:42:43,840
DATA FOR USE IN THAT DATA. AND

1017
00:42:43,840 --> 00:42:47,520
WHEN YOU TRANSFORM AND ANALYZE

1018
00:42:47,520 --> 00:42:49,200
IDENTIFY THE SNPS IN THE DATA,

1019
00:42:49,200 --> 00:42:50,840
THE GENE EXPRESSION COMES,

1020
00:42:50,840 --> 00:42:51,720
THAT'S WHAT I CONSIDER

1021
00:42:51,720 --> 00:42:56,840
INFORMATION. FROM INFORMATION TO

1022
00:42:56,840 --> 00:42:59,640
KNOWLEDGE, TO ADD MORE VALUE, BE

1023
00:42:59,640 --> 00:43:02,960
LOOKING TO SEE WHETHER HYPO OR

1024
00:43:02,960 --> 00:43:05,600
HYPERMETHYLATION CHARACTERS,

1025
00:43:05,600 --> 00:43:08,080
KNOWLEDGE, (INAUDIBLE) GENE OR

1026
00:43:08,080 --> 00:43:09,880
EXPRESS OR REPRESENTED IN A

1027
00:43:09,880 --> 00:43:10,760
PARTICULAR CONDITION THAT'S KIND

1028
00:43:10,760 --> 00:43:13,600
OF KNOWLEDGE. SO THAT'S HOW THE

1029
00:43:13,600 --> 00:43:14,840
HIERARCHY BUILT UP AND WITH

1030
00:43:14,840 --> 00:43:17,240
IMAGING MODALITY THINK OF MRI

1031
00:43:17,240 --> 00:43:19,560
IMAGES AND FROM THAT MAYBE APPLY

1032
00:43:19,560 --> 00:43:23,560
MACHINE LEARNING ALGORITHMS,

1033
00:43:23,560 --> 00:43:25,120
AUTOMATED SYSTEMS TO IDENTIFY

1034
00:43:25,120 --> 00:43:26,360
BRAIN REGIONS AND TAKING THAT

1035
00:43:26,360 --> 00:43:27,920
DATA AND EXTRACTING THE

1036
00:43:27,920 --> 00:43:28,880
INFORMATION FROM THAT AND

1037
00:43:28,880 --> 00:43:30,600
EVENTUALLY YOU ARE GOING TO TAKE

1038
00:43:30,600 --> 00:43:31,920
THESE REGIONS OF THE BRAIN

1039
00:43:31,920 --> 00:43:33,280
THOUGH THERE ARE DIFFERENCES IN

1040
00:43:33,280 --> 00:43:34,160
ACTIVATION OF PARTICULAR BRAIN

1041
00:43:34,160 --> 00:43:37,360
REGION IN A PARTICULAR CONDITION

1042
00:43:37,360 --> 00:43:39,920
AND THAT IS KIND OF WHERE THE

1043
00:43:39,920 --> 00:43:42,680
KNOWLEDGE COMES IN. SIMILARLY IF

1044
00:43:42,680 --> 00:43:44,920
YOU LOCK IN THE CLINICAL FIELD

1045
00:43:44,920 --> 00:43:46,880
AND EMR AND DATA SELECTED IN THE

1046
00:43:46,880 --> 00:43:48,600
HOSPITAL, THAT DATA AND

1047
00:43:48,600 --> 00:43:50,720
INCLUDING DEMOGRAPHICS AND FROM

1048
00:43:50,720 --> 00:43:51,320
THERE SAY FOR INSTANCE RESTING

1049
00:43:51,320 --> 00:43:52,600
HEART IS A GOOD EXAMPLE OF

1050
00:43:52,600 --> 00:43:54,480
HEARING SPECIALS, FOR EXAMPLE

1051
00:43:54,480 --> 00:43:55,760
IT'S ESSENTIALLY THE

1052
00:43:55,760 --> 00:43:57,760
MEASUREMENTS OF DATA AND THEN

1053
00:43:57,760 --> 00:44:00,440
WHEN YOU SORT OF TALK THERE'S

1054
00:44:00,440 --> 00:44:02,240
HEART RATE YOU'VE MEASURED IS

1055
00:44:02,240 --> 00:44:04,040
THE RESTING HEART RATE THAT

1056
00:44:04,040 --> 00:44:05,480
BECOMES INFORMATION AND THEN

1057
00:44:05,480 --> 00:44:08,440
WHEN YOU TRANSFORM INTO

1058
00:44:08,440 --> 00:44:10,120
KNOWLEDGE IS THE HEARING LOSS

1059
00:44:10,120 --> 00:44:11,800
AND IN THE CONTEXT OF AGE AND

1060
00:44:11,800 --> 00:44:15,520
SEX AND OTHER EXPORTER, THAT'S

1061
00:44:15,520 --> 00:44:17,960
THE KIND OF KNOWLEDGE ASPECT BUT

1062
00:44:17,960 --> 00:44:20,400
SAY IF YOU ARE LOOKING AT

1063
00:44:20,400 --> 00:44:21,240
RESTING HEART RAY AND INDIVIDUAL

1064
00:44:21,240 --> 00:44:23,520
LOOKING AT THE RESTK -- SO

1065
00:44:23,520 --> 00:44:24,280
THAT'S KIND OF WHERE THE

1066
00:44:24,280 --> 00:44:26,320
KNOWLEDGE BUILDS IN MANY. YOU

1067
00:44:26,320 --> 00:44:27,560
THINK ABOUT DATA TYPE AND

1068
00:44:27,560 --> 00:44:30,440
SHARING AND INFORMING THE DATA.

1069
00:44:30,440 --> 00:44:31,800
SO TO MATCH WITH THAT, IF YOU

1070
00:44:31,800 --> 00:44:35,120
THINK ABOUT REPOSITORY,

1071
00:44:35,120 --> 00:44:36,240
REPOSITORIES HAVE FOLLOWING

1072
00:44:36,240 --> 00:44:39,040
DIFFERENT SPECTRUM, THEY ADDRESS

1073
00:44:39,040 --> 00:44:40,600
THE DATA, INFORMATION ASPECT OF

1074
00:44:40,600 --> 00:44:42,680
IT, OF THE KNOWLEDGE ASPECT OF

1075
00:44:42,680 --> 00:44:43,840
IT. FOR INSTANCE WHEN YOU THINK

1076
00:44:43,840 --> 00:44:45,720
ABOUT DATA, WE HAVE NCBI

1077
00:44:45,720 --> 00:44:47,640
SEQUENCING ARCHIVE WHICH IS

1078
00:44:47,640 --> 00:44:49,080
GENOMIC DATA LIVE. THERE ARE

1079
00:44:49,080 --> 00:44:51,760
DATA. SO THAT'S GOING TO BE DATA

1080
00:44:51,760 --> 00:44:55,640
LEVEL REPOSITORY IS DESIGNED TO

1081
00:44:55,640 --> 00:44:59,280
ACT GENOMIC DATA. LOOK AT

1082
00:44:59,280 --> 00:45:02,960
(INAUDIBLE) DATABASE EMBPIAR,

1083
00:45:02,960 --> 00:45:05,200
WHERE YOU DEPOSIT RAW IMAGING

1084
00:45:05,200 --> 00:45:08,040
DATA FROM MICROSCOPY OR PROTEIN

1085
00:45:08,040 --> 00:45:09,640
STRUCTUSTRUCTURE. SIMILARLY A CE

1086
00:45:09,640 --> 00:45:13,240
OFFER O PLACES WITH DATABASES

1087
00:45:13,240 --> 00:45:14,680
THERE ARE GENERALIZED

1088
00:45:14,680 --> 00:45:16,040
REPOSITORIES THAT TAKE ANY KIND

1089
00:45:16,040 --> 00:45:19,120
OF DATA AND THAT MOSTLY RAW DATA

1090
00:45:19,120 --> 00:45:20,520
THAT CAN ALSO HANDLE INFORMATION

1091
00:45:20,520 --> 00:45:21,320
AS WELL AS ADDITIONAL

1092
00:45:21,320 --> 00:45:25,040
INFORMATION. IF YOU GO UP THE

1093
00:45:25,040 --> 00:45:28,040
PYRAMID THE NEXT LEVEL IS WHAT I

1094
00:45:28,040 --> 00:45:30,720
CONSIDER SOMETHING LIKE THE GENE

1095
00:45:30,720 --> 00:45:33,360
OMNIBUS EXPRESSION OMNIBUS,

1096
00:45:33,360 --> 00:45:34,320
SOMEBODY CAN GO AND QUERY TO

1097
00:45:34,320 --> 00:45:36,280
LOOK AT THE GENE EXPRESSION

1098
00:45:36,280 --> 00:45:39,640
POUNDS RATHER THAN LOOKING AT

1099
00:45:39,640 --> 00:45:43,960
THE RAW READS WHICH LEAD TO SAY

1100
00:45:43,960 --> 00:45:44,760
PRINCE MICROWAVE OF GENE

1101
00:45:44,760 --> 00:45:46,160
EXPRESSION VALUES RATHER THAN

1102
00:45:46,160 --> 00:45:47,760
JUST RAW IMAGE COMING. SO THAT'S

1103
00:45:47,760 --> 00:45:50,560
WHERE THE INFORMATION COMES IN.

1104
00:45:50,560 --> 00:45:52,800
SIMPLY LOOK AT ALL THE SNPS

1105
00:45:52,800 --> 00:45:53,680
DIRECTED AND DIFFERENT DATA

1106
00:45:53,680 --> 00:45:56,200
SETS. YOU MOVE THE HIERARCHY IN

1107
00:45:56,200 --> 00:46:02,280
KNOWLEDGE AND START LOOKING A AT

1108
00:46:02,280 --> 00:46:04,440
THE CLINICAL SIGNIFICANCE,

1109
00:46:04,440 --> 00:46:06,400
CLINVAR. A COUPLE OF EXAMPLES

1110
00:46:06,400 --> 00:46:07,600
WHAT I CONSIDER NOT TRUE

1111
00:46:07,600 --> 00:46:12,040
KNOWLEDGE BASES BUT MORE TOWARDS

1112
00:46:12,040 --> 00:46:13,160
THAT, OR SOMETHING LIKE GEAR

1113
00:46:13,160 --> 00:46:15,160
PLATFORM WHICH IS COMMON IN THE

1114
00:46:15,160 --> 00:46:18,600
HEARING FIELD OR THE B DBD

1115
00:46:18,600 --> 00:46:20,600
DATABASE FROM IOWA, ALL THIS IS

1116
00:46:20,600 --> 00:46:21,520
MOVING INFORMATION TO BUILD THE

1117
00:46:21,520 --> 00:46:23,640
KNOWLEDGE BASE SO PEOPLE WITH

1118
00:46:23,640 --> 00:46:25,920
HAVE INTERESTING PORTIONS OF THE

1119
00:46:25,920 --> 00:46:27,720
DATA RATHER THAN JUST LOOKING AT

1120
00:46:27,720 --> 00:46:30,880
THE RAW DATA. SO WHEN YOU THINK

1121
00:46:30,880 --> 00:46:32,880
ABOUT REPOSITORIES YOU WANT TO

1122
00:46:32,880 --> 00:46:34,240
SAY OKAY WHICH PARTICULAR ASPECT

1123
00:46:34,240 --> 00:46:36,440
OF DATA SCIENCE REPOSITORY IS

1124
00:46:36,440 --> 00:46:38,240
ADDRESSING IS THE DATA IS IT

1125
00:46:38,240 --> 00:46:41,560
INFORMATION OR THAT KNOWLEDGE.

1126
00:46:41,560 --> 00:46:43,240
AND THEN I JUST SORT OF PUBLISH

1127
00:46:43,240 --> 00:46:44,800
THE SET OF GUIDELINES WHAT ARE

1128
00:46:44,800 --> 00:46:45,800
THE REQUIRED CHARACTERISTICS OF

1129
00:46:45,800 --> 00:46:47,240
THE REPOSITORIES, I HAVE

1130
00:46:47,240 --> 00:46:49,120
HIGHLIGHTED SO IT IS NOT A LONG

1131
00:46:49,120 --> 00:46:50,640
LIST DON'T NEED TO GO THROUGH

1132
00:46:50,640 --> 00:46:52,400
EACH BUT MAIN ONE DATA

1133
00:46:52,400 --> 00:46:54,720
REPOSITORY PROVIDE YOU LONG TERM

1134
00:46:54,720 --> 00:46:59,000
SUSTAINABILITY, AND UNIQUE

1135
00:46:59,000 --> 00:47:02,840
IDENTIFIER SO WHEN YOU REUSE THE

1136
00:47:02,840 --> 00:47:04,280
PUBLISHING, THEN THE UNIQUE

1137
00:47:04,280 --> 00:47:05,320
IDENTIFIER BECOMES IMPORTANT

1138
00:47:05,320 --> 00:47:06,960
BECAUSE YOU CAN LOOK AT THE

1139
00:47:06,960 --> 00:47:08,640
PROVIDENCE OF THE ANALYSIS AND

1140
00:47:08,640 --> 00:47:09,920
YOU CAN TRACK IT. MORE IMPORTANT

1141
00:47:09,920 --> 00:47:13,680
IS WHAT METADATA THE REPOSITORY

1142
00:47:13,680 --> 00:47:16,920
SUPPORT. THE RICHER THE METADATA

1143
00:47:16,920 --> 00:47:19,240
THE REPOSITORY SUPPORTS THE MORE

1144
00:47:19,240 --> 00:47:20,520
INFORMATION TO TWO WITH THE DATA

1145
00:47:20,520 --> 00:47:21,800
SET AS FAR AS POOLING THE DATA,

1146
00:47:21,800 --> 00:47:24,920
CREATING IT AND BUILDING CERTAIN

1147
00:47:24,920 --> 00:47:28,080
INTERFACES AROUND IT. SIMILARLY

1148
00:47:28,080 --> 00:47:29,080
DATA SETS FROM DIFFERENT

1149
00:47:29,080 --> 00:47:30,480
RESTRICTIONS, SO YOU WANT TO

1150
00:47:30,480 --> 00:47:32,600
MAKE SURE THAT CLEAR USE

1151
00:47:32,600 --> 00:47:36,000
GUIDANCE IN THE REPOSITORIES AND

1152
00:47:36,000 --> 00:47:37,280
MEANINGFUL USE, ANOTHER

1153
00:47:37,280 --> 00:47:38,520
IMPORTANT ASPECT OF THE

1154
00:47:38,520 --> 00:47:40,760
REPOSITORY IS THE REPOSITORIES

1155
00:47:40,760 --> 00:47:43,320
ARE USED COMMONLY FORMATS WHEN

1156
00:47:43,320 --> 00:47:46,680
YOU ARE LOOKING AT GENOMIC DATA

1157
00:47:46,680 --> 00:47:49,680
SEQUENCE, PART Q IS KIND OF A

1158
00:47:49,680 --> 00:47:52,240
FILE FORMAT WHICH IS UNIVERSAL

1159
00:47:52,240 --> 00:47:53,920
AND COMMON, SO THEY SUPPORT IT

1160
00:47:53,920 --> 00:47:56,040
OR SUPPORT THE ASEATIC CERTAIN

1161
00:47:56,040 --> 00:47:58,160
STANDARD BECAUSE IT MAKES THAT

1162
00:47:58,160 --> 00:47:59,400
USE A MORE DIFFICULT SO THESE

1163
00:47:59,400 --> 00:48:01,040
ARE SOME OF THE CONSIDERATIONS.

1164
00:48:01,040 --> 00:48:02,880
YOU WANT TO KEEP IN MIND WHEN

1165
00:48:02,880 --> 00:48:05,480
LOOKING AT REPOSITORIES AND

1166
00:48:05,480 --> 00:48:06,080
EVENTUALLY THERE'S REQUIREMENTS

1167
00:48:06,080 --> 00:48:10,920
OF REPOSITORIES RELATIVE TO --

1168
00:48:10,920 --> 00:48:12,360
WHETHER THERE'S FIDELITY TO

1169
00:48:12,360 --> 00:48:14,280
CONTENT AND WHETHER THERE'S A

1170
00:48:14,280 --> 00:48:15,800
PLANS FOR BREACH AND DO THEY

1171
00:48:15,800 --> 00:48:18,000
CONTROL THE DOWNLOADS AND

1172
00:48:18,000 --> 00:48:19,800
WHETHER THEY'RE METRICS FOR THE

1173
00:48:19,800 --> 00:48:20,840
DOWNLOADS SO THOSE ARE

1174
00:48:20,840 --> 00:48:21,960
ADDITIONAL CONSIDERATIONS FOR

1175
00:48:21,960 --> 00:48:24,240
REPOSITORIES WHEN YOU ARE

1176
00:48:24,240 --> 00:48:25,640
CONSIDERING THEM FOR HUMAN DATA.

1177
00:48:25,640 --> 00:48:27,640
SO THE REPOSITORIES ARE THREE OR

1178
00:48:27,640 --> 00:48:28,800
FOUR FLAVORS AND THESE ARE ALL

1179
00:48:28,800 --> 00:48:32,080
THE RES TO POWERS THAT ARE --

1180
00:48:32,080 --> 00:48:36,760
REPOSITORIES CURRENTLY

1181
00:48:36,760 --> 00:48:39,520
ACCEPTABLE BY THE NEW MANAGEMENT

1182
00:48:39,520 --> 00:48:40,720
AND SHARING POLICY. THE NEW

1183
00:48:40,720 --> 00:48:43,520
POLICY IS CLEAR, YOU CANNOT HAVE

1184
00:48:43,520 --> 00:48:45,600
YOUR OWN LAB DISSEMINATING DATA

1185
00:48:45,600 --> 00:48:48,760
BECAUSE THAT IS NOT CONSIDERED A

1186
00:48:48,760 --> 00:48:50,120
INSTITUTIONAL REPROSTORY. SO

1187
00:48:50,120 --> 00:48:51,360
THERE IS SOME INSTITUTES THAT

1188
00:48:51,360 --> 00:48:53,160
ARE HAVE A ESTABLISHED

1189
00:48:53,160 --> 00:48:54,440
REPOSITORY, HARVARD HAS

1190
00:48:54,440 --> 00:48:57,160
SOMETHING OF A DATA VERSE,

1191
00:48:57,160 --> 00:48:58,960
DIGITAL REPOSITORY UNIVERSITY OF

1192
00:48:58,960 --> 00:49:00,080
MARYLAND DRUM. THISs ARE

1193
00:49:00,080 --> 00:49:01,320
INSTITUTIONAL REPOSITORIES WHERE

1194
00:49:01,320 --> 00:49:06,600
YOU CAN SUBMIT YOUR DATA AND

1195
00:49:06,600 --> 00:49:10,960
ACCEPTABLE BY THE REPOSITORY.

1196
00:49:10,960 --> 00:49:12,720
THE SECOND KIND OF REPOSITORY IS

1197
00:49:12,720 --> 00:49:15,240
THE GENERALIST REPOSITORIES SO

1198
00:49:15,240 --> 00:49:16,320
THEY DON'T SPECIALIZE AND YOU

1199
00:49:16,320 --> 00:49:18,000
CAN SUBMIT ANY DATA OR RAW DATA

1200
00:49:18,000 --> 00:49:20,560
YOU HAVE OR KNOWLEDGE OR MATTER.

1201
00:49:20,560 --> 00:49:27,640
THESE ARE REPOSITORIES THAT ARE

1202
00:49:27,640 --> 00:49:29,000
FUNDED AND SUPPORTED BY NIH.

1203
00:49:29,000 --> 00:49:31,680
THESE ARE THE NAMES HERE, TO

1204
00:49:31,680 --> 00:49:33,480
SUPPORT THIS KIND OF DATA.  SO

1205
00:49:33,480 --> 00:49:35,040
THEN MOVING ALONG THE SPECTRUM

1206
00:49:35,040 --> 00:49:37,160
YOU HAVE SPECIALIZED

1207
00:49:37,160 --> 00:49:38,440
REPOSITORIES THAT HAVE BEEN THE

1208
00:49:38,440 --> 00:49:41,120
LAST TEN OR 15 YEARS.  I WILL

1209
00:49:41,120 --> 00:49:43,160
CATEGORIZE TWO MAIN CATEGORIES

1210
00:49:43,160 --> 00:49:45,760
ONE IS PARTICULAR DISEASE FOCUS

1211
00:49:45,760 --> 00:49:47,480
OR PARTICULAR DOMAIN FOCUS.

1212
00:49:47,480 --> 00:49:51,080
ANOTHER EXAMPLE IS THE AFRICAN

1213
00:49:51,080 --> 00:49:56,160
AMERICAN PARTNERSHIP DISEASE --

1214
00:49:56,160 --> 00:49:56,960
ALZHEIMER'S DISEASE KNOWLEDGE

1215
00:49:56,960 --> 00:49:58,880
PORTAL. THIS IS REPOSITORY WHERE

1216
00:49:58,880 --> 00:50:01,800
THEY ARE COLLECTING ALL THE DATA

1217
00:50:01,800 --> 00:50:03,640
RELATED TO ALZHEIMERS SO ONE

1218
00:50:03,640 --> 00:50:05,400
LOCATION TO LOOK AT ALL THE DATA

1219
00:50:05,400 --> 00:50:07,480
AND BE ABLE TO DOWNLOAD AND DO

1220
00:50:07,480 --> 00:50:09,960
SOMETHING WITH IT SO THIS IS THE

1221
00:50:09,960 --> 00:50:11,680
DISEASE OR DOMAIN SPECIFIC

1222
00:50:11,680 --> 00:50:13,280
REPOSITORIES. THE OTHER ONES WE

1223
00:50:13,280 --> 00:50:15,000
WILL TALK ABOUT LATER IN MY TALK

1224
00:50:15,000 --> 00:50:20,640
IS NIDCR IS DATA REPOSITORY

1225
00:50:20,640 --> 00:50:23,320
(INAUDIBLE) A SPECIALIZED

1226
00:50:23,320 --> 00:50:25,920
REPOSITORY CRANIOFACIAL RESEARCH

1227
00:50:25,920 --> 00:50:27,040
COMMUNITY AND SO ESSENTIALLY

1228
00:50:27,040 --> 00:50:29,360
THAT BECOMES LIKE A HUB FOR

1229
00:50:29,360 --> 00:50:31,160
PEOPLE TO GO COLLECT THE DATA

1230
00:50:31,160 --> 00:50:33,480
AND DO SOMETHING WITH IT.  THE

1231
00:50:33,480 --> 00:50:36,120
OTHER KIND OF SPECIALIZED

1232
00:50:36,120 --> 00:50:37,400
REPOSITORIES DATA SOURCES THINK

1233
00:50:37,400 --> 00:50:39,720
ABOUT NCBI SEQUENCING ARCHIVE.

1234
00:50:39,720 --> 00:50:41,320
THEY ONLY TAKE ONE KIND OF DATA

1235
00:50:41,320 --> 00:50:45,040
WHICH IS GENOME SEQUENCING DATA 

1236
00:50:45,040 --> 00:50:49,920
SIMILARLY NIAID HAS IMM PORT

1237
00:50:49,920 --> 00:50:51,360
IMMUNOLOGY DATA SO THESE ARE

1238
00:50:51,360 --> 00:50:52,960
SPECIALIZED REPOSITORIES THAT

1239
00:50:52,960 --> 00:50:53,800
SPECIALIZE IN ONE PARTICULAR

1240
00:50:53,800 --> 00:51:00,160
KIND OF DATA. WHY DO YOU NEED

1241
00:51:00,160 --> 00:51:02,560
SORT OF A SINGLE DATA? THE IDEA

1242
00:51:02,560 --> 00:51:04,560
IS THAT ESSENTIALLY IF YOU A

1243
00:51:04,560 --> 00:51:07,160
SINGLE REPOSITORY FOR A

1244
00:51:07,160 --> 00:51:08,280
PARTICULAR KIND OF DATA YOU CAN

1245
00:51:08,280 --> 00:51:10,200
BUILD TOOL AROUND IT SO THERE'S

1246
00:51:10,200 --> 00:51:13,200
VALUE HAVING REPOSITORIES WHICH

1247
00:51:13,200 --> 00:51:14,000
ARE SINGLE DATA SPECIFIC

1248
00:51:14,000 --> 00:51:17,840
REPOSITORIES.  MOVING UP THE

1249
00:51:17,840 --> 00:51:19,000
HIERARCHY, ONCE YOU HAVE ALL THE

1250
00:51:19,000 --> 00:51:20,720
DATA REPOSITORIES HANDLING THAT,

1251
00:51:20,720 --> 00:51:22,240
WE CAN INCREASINGLY CHALLENGE

1252
00:51:22,240 --> 00:51:25,840
FOR RESEARCHERS TO FIND THE DATA

1253
00:51:25,840 --> 00:51:29,240
FOR INSTANCE A GOOD EXAMPLE

1254
00:51:29,240 --> 00:51:30,600
MIGHT BE IN GENOMIC DATA WHICH

1255
00:51:30,600 --> 00:51:32,720
IS LOOKING AT THE CELL TYPES AND

1256
00:51:32,720 --> 00:51:34,760
THE IMAGING DATA THAT GOES WITH

1257
00:51:34,760 --> 00:51:36,360
IT.  ALL OF A SUDDEN YOU HAVE

1258
00:51:36,360 --> 00:51:37,760
TWO DIFFERENT REPOSITORIES AND

1259
00:51:37,760 --> 00:51:39,760
RESEARCH REPOSITORIES TO ACCESS

1260
00:51:39,760 --> 00:51:42,000
THE DATA. SO INCREASINGLY

1261
00:51:42,000 --> 00:51:44,800
WORKING TOWARDS ECOSYSTEMS WHICH

1262
00:51:44,800 --> 00:51:46,600
IS THE (INAUDIBLE) ECOSYSTEM

1263
00:51:46,600 --> 00:51:48,200
WHERE THE DATA IS MANAGED

1264
00:51:48,200 --> 00:51:49,760
TOGETHER OR LOOSE ECOSYSTEM

1265
00:51:49,760 --> 00:51:51,520
WHERE SEDGELY REPOSITORIES TALK

1266
00:51:51,520 --> 00:51:53,120
TO EACH OTHER AND THAT IS WHY WE

1267
00:51:53,120 --> 00:51:54,880
CALL IT ECOSYSTEMS.  HERE ARE

1268
00:51:54,880 --> 00:51:57,920
EXAMPLES OF ECOSYSTEMS, NHLBI

1269
00:51:57,920 --> 00:52:04,640
HAS ECOSYSTEM PROVIDED. NCI HAS

1270
00:52:04,640 --> 00:52:06,880
CANCER RESEARCH DATA COMMONS,

1271
00:52:06,880 --> 00:52:08,080
SOMETHING IN THE NEXT FEW

1272
00:52:08,080 --> 00:52:10,560
SLIDES. NHGRI HAS THE GENOMIC

1273
00:52:10,560 --> 00:52:12,600
ANALYSIS VISUALIZATION AND

1274
00:52:12,600 --> 00:52:15,040
INFORMATICS LAB OR ANVIL, THIS

1275
00:52:15,040 --> 00:52:18,240
IS A GENOMICS FOCUS REPOSITORY

1276
00:52:18,240 --> 00:52:21,120
FOR TOOLING AND YOU CAN MANAGE

1277
00:52:21,120 --> 00:52:24,240
THE DATA AND ALL OF US RESEARCH

1278
00:52:24,240 --> 00:52:26,560
HUB ON THE RESEARCH DATA IS

1279
00:52:26,560 --> 00:52:28,160
GOING TO BE LIMITED AND YOU CAN

1280
00:52:28,160 --> 00:52:29,520
GO AND ACCESS THAT DATA AND THE

1281
00:52:29,520 --> 00:52:32,640
LAST ONE IS COMMON FUND DATA

1282
00:52:32,640 --> 00:52:34,200
ECOSYSTEM. HERE IT DOES NOT

1283
00:52:34,200 --> 00:52:37,040
MAINTAIN THE DATA IT IS MORE A

1284
00:52:37,040 --> 00:52:37,280
PORTAL.

1285
00:52:37,280 --> 00:52:39,160
SO THE IDEA IS INDEXES ON THE

1286
00:52:39,160 --> 00:52:41,360
DATA THAT ARE STORED INTO

1287
00:52:41,360 --> 00:52:42,920
INDIVIDUAL DATA REPOSITORIES SO

1288
00:52:42,920 --> 00:52:46,840
ESSENTIALLY THE NEW CFDE

1289
00:52:46,840 --> 00:52:48,280
RESEARCH PORTAL YOU CAN GO AND

1290
00:52:48,280 --> 00:52:49,640
DOWNLOAD THE DATA. SO HERE IS AN

1291
00:52:49,640 --> 00:52:53,240
EXAMPLE OF HUB AND SPOKE MODEL. 

1292
00:52:53,240 --> 00:52:55,320
THIS IS IN THE BRAIN INITIATIVE.

1293
00:52:55,320 --> 00:52:59,840
THE INITIATIVE FOURTH LARGEST

1294
00:52:59,840 --> 00:53:00,760
SIGNIFICANT DATA MODALITIES. 

1295
00:53:00,760 --> 00:53:05,960
ONE IS IMAGING WHICH IS A

1296
00:53:05,960 --> 00:53:07,200
BUILDING BRAIN IMAGING LIBRARY

1297
00:53:07,200 --> 00:53:08,640
IN UNIVERSITY OF PITTSBURG AND

1298
00:53:08,640 --> 00:53:12,400
THEN NEMO WHICH IS INVOLVED YAHT

1299
00:53:12,400 --> 00:53:13,240
OF MARYLAND WHICH IS WHERE THE

1300
00:53:13,240 --> 00:53:16,360
GENOMIC DATA AND THEN HOSTS THE

1301
00:53:16,360 --> 00:53:20,760
VOLUME METRIC DATA AND THEN DATA

1302
00:53:20,760 --> 00:53:21,400
ELECTROPHYSIOLOGY, THEY DON'T

1303
00:53:21,400 --> 00:53:23,200
REALLY TALK TO EACH OTHER THAT

1304
00:53:23,200 --> 00:53:25,400
MUCH SO RESEARCH IS INTERESTED

1305
00:53:25,400 --> 00:53:26,840
IN DOING DATA RECOVERY THERE IS

1306
00:53:26,840 --> 00:53:31,200
A CENTRAL REPOSITORY WHICH IS

1307
00:53:31,200 --> 00:53:33,480
BCDC WHICH IS MANAGED BY THE

1308
00:53:33,480 --> 00:53:35,040
ALLEN INSTITUTE SO PEOPLE DO GO

1309
00:53:35,040 --> 00:53:37,360
THERE AND CENTRAL GATEWAY WHICH

1310
00:53:37,360 --> 00:53:39,360
YOU CAN ACCESS THESE INDIVIDUAL

1311
00:53:39,360 --> 00:53:40,920
REPOSITORIES INSTEAD OF FULL

1312
00:53:40,920 --> 00:53:41,920
INFORMATION AND REPOSITORIES SO

1313
00:53:41,920 --> 00:53:43,360
THIS IS THE HUB AND SPOKE MODEL

1314
00:53:43,360 --> 00:53:44,920
FOR THE BIG DATA SYSTEMS AND

1315
00:53:44,920 --> 00:53:48,400
THAT WORKS BRAIN INITIATIVE. AND

1316
00:53:48,400 --> 00:53:49,520
LITTLE CROSS OVER BETWEEN

1317
00:53:49,520 --> 00:53:51,200
INDIVIDUAL REPOSITORIES BUT

1318
00:53:51,200 --> 00:53:53,760
GENERALLY NOT A LOT.  SO THE

1319
00:53:53,760 --> 00:53:56,200
NEXT IS THE NCI CANCER RESEARCH

1320
00:53:56,200 --> 00:54:00,480
DATA. THEY HAVE A LARGE DATABASE

1321
00:54:00,480 --> 00:54:01,840
OF DATA SO DATA SPECIFIC

1322
00:54:01,840 --> 00:54:06,360
REPOSITORIES, CDC IS THE GENOMIC

1323
00:54:06,360 --> 00:54:08,280
DATA COMMONS THERE THE GENOMIC

1324
00:54:08,280 --> 00:54:11,440
DATA FROM NCI IS MANAGED AND THE

1325
00:54:11,440 --> 00:54:14,520
CDC WHICH HANDLINGS THE

1326
00:54:14,520 --> 00:54:15,520
PROTEOMICS DATA COMMONS HANDLES

1327
00:54:15,520 --> 00:54:17,520
THE PROTEOMIC DATA ESSENTIALLY

1328
00:54:17,520 --> 00:54:19,600
AND THEY ARE INDEPENDENT

1329
00:54:19,600 --> 00:54:21,040
REPOSITORIES WHICH HANDLE THE

1330
00:54:21,040 --> 00:54:22,520
DATA TYPES AND THEY ARE TOOLING

1331
00:54:22,520 --> 00:54:23,960
AROUND THAT AND THEY SORT OF

1332
00:54:23,960 --> 00:54:26,120
TALK TO EACH OTHER AND USE THE

1333
00:54:26,120 --> 00:54:27,480
COMMON INFRASTRUCTURE AND COMMON

1334
00:54:27,480 --> 00:54:29,880
APIs. BUT THE SPECIALIZED

1335
00:54:29,880 --> 00:54:31,880
COMMON REPOSITORIES FOR A

1336
00:54:31,880 --> 00:54:33,960
RESEARCHER, IN MULTI-MODAL DATA

1337
00:54:33,960 --> 00:54:39,880
IMAGING GENOMICS DATA ON THE

1338
00:54:39,880 --> 00:54:40,960
PHYSIOLOGY WE DON'T KNEE THAT

1339
00:54:40,960 --> 00:54:42,920
YOU HAVE TO GO TO THREER O FOUR

1340
00:54:42,920 --> 00:54:45,400
PLACES TO SEE WHAT AND DOWNLOAD

1341
00:54:45,400 --> 00:54:46,640
THEM AND BECOMES A BURDEN ON THE

1342
00:54:46,640 --> 00:54:47,880
CHALLENGE FOR SCIENTIST SOTS THE

1343
00:54:47,880 --> 00:54:50,320
EFFORTS TO TRY TO CENTRALIZE AND

1344
00:54:50,320 --> 00:54:54,480
NCI IS ADDING THE CANCER DATA

1345
00:54:54,480 --> 00:54:55,400
AGGREGATOR SO THE IDEA IS YOU GO

1346
00:54:55,400 --> 00:55:04,040
TO THE CDA AND RUN A THIRD RUN A

1347
00:55:04,040 --> 00:55:07,120
SEARCH AND TELL YOU DIFFERENT

1348
00:55:07,120 --> 00:55:10,000
DATA TYPES THAT MIGHT EXIST. SO

1349
00:55:10,000 --> 00:55:12,520
THAT'S OOH WHERE THE MODELS

1350
00:55:12,520 --> 00:55:14,520
EVENTUALLY MIGRATE TOWARD THAT.

1351
00:55:14,520 --> 00:55:17,080
THEN THE OTHER SPECTRUM ONE IS

1352
00:55:17,080 --> 00:55:18,680
THE COMMON FUND HUB MAP WHICH IS

1353
00:55:18,680 --> 00:55:20,720
NEW PROJECT FROM THE COMMON

1354
00:55:20,720 --> 00:55:23,480
FUND, GENERATING DIFFERENT

1355
00:55:23,480 --> 00:55:25,840
GENOMICS -- IT'S MASS

1356
00:55:25,840 --> 00:55:27,640
SPECTROSCOPY DATA, ALL HANDLED

1357
00:55:27,640 --> 00:55:30,720
IN ONE REPOSITORY SEARCH

1358
00:55:30,720 --> 00:55:31,520
INFRASTRUCTURE AND BROWSE THE

1359
00:55:31,520 --> 00:55:36,240
DATA AND VISUALIZE OUR ANALOGY.

1360
00:55:36,240 --> 00:55:38,800
SIMILARLY I MENTIONED ANIMALS

1361
00:55:38,800 --> 00:55:41,200
THIS IS PROJECT FROM NHGRI WHERE

1362
00:55:41,200 --> 00:55:43,000
THE GENOMIC DATA FROM LARGE

1363
00:55:43,000 --> 00:55:47,720
STUDIES ARE DEPOSITED AND PEOPLE

1364
00:55:47,720 --> 00:55:50,000
THE USE THE AND ANALYZE THE

1365
00:55:50,000 --> 00:55:51,680
VISUALIZE AND IT IS THERE AND

1366
00:55:51,680 --> 00:55:54,240
SIMILARLY NIDCR IS A

1367
00:55:54,240 --> 00:55:55,240
MULTI-MOLDAL DATA WHERE THERE

1368
00:55:55,240 --> 00:55:59,200
ARE MULTIPLE DOMAINS, CAN SUBMIT

1369
00:55:59,200 --> 00:56:00,680
THEIR DATA OR MULTIPLE LARGE

1370
00:56:00,680 --> 00:56:01,960
FROM APOLOGETICS SUBMIT DATA SO

1371
00:56:01,960 --> 00:56:03,280
IT IS NOT ONE PARTICULAR DATA

1372
00:56:03,280 --> 00:56:04,720
TYPE. SO THIS IS A GENERAL

1373
00:56:04,720 --> 00:56:06,200
FLAVOR OF GENERAL REPOSITORIES

1374
00:56:06,200 --> 00:56:08,040
AND HOW DIFFERENT ICs OR

1375
00:56:08,040 --> 00:56:09,640
COMMUNITIES ARE BUILDING

1376
00:56:09,640 --> 00:56:13,520
REPOSITORIES FOR US TO DEVELOP

1377
00:56:13,520 --> 00:56:17,840
AND SORT OF CONSIDER. THEN

1378
00:56:17,840 --> 00:56:19,760
COMPARISON FROM THE GENERAL

1379
00:56:19,760 --> 00:56:20,880
REPOSITORY WHICH IS SIMPLER TO

1380
00:56:20,880 --> 00:56:23,160
USE TAKE ANY TYPE OF DATA FOR

1381
00:56:23,160 --> 00:56:26,120
THE WEBSITE, THERE ARE LIMITED

1382
00:56:26,120 --> 00:56:28,800
WHOLE LIVE DATABASES

1383
00:56:28,800 --> 00:56:30,480
REPOSITORIES AND LIMITED

1384
00:56:30,480 --> 00:56:32,960
VISUALIZATION, ALL THE WAY TO

1385
00:56:32,960 --> 00:56:35,480
THE RIGHT OF THE CHART TABLE

1386
00:56:35,480 --> 00:56:37,080
ESSENTIALLY LOOK AT THE E COMB

1387
00:56:37,080 --> 00:56:38,960
SYSTEMS THEY ARE PRETTY

1388
00:56:38,960 --> 00:56:39,840
COLLECTION, THEY CAN TAKE ANY

1389
00:56:39,840 --> 00:56:42,760
TYPE OF DATA, PEOPLE WORKING

1390
00:56:42,760 --> 00:56:44,320
THERE (INAUDIBLE) DATABASE,

1391
00:56:44,320 --> 00:56:45,800
(INAUDIBLE) INTEGRATION, SUPPORT

1392
00:56:45,800 --> 00:56:47,800
WHICH METADATA BUT THESE ARE

1393
00:56:47,800 --> 00:56:49,920
EXPENSIVE TO BUILD. I DON'T KNOW

1394
00:56:49,920 --> 00:56:52,880
THE EXACT NUMBER BUT MY GUESS

1395
00:56:52,880 --> 00:56:54,800
WOULD BE PROBABLY SPENT TENS OF

1396
00:56:54,800 --> 00:56:56,400
MILLIONS OF DOLLARS BUILDING THE

1397
00:56:56,400 --> 00:56:58,040
CRDC IF NOT MORE. SO BUILDING

1398
00:56:58,040 --> 00:56:59,840
THE ECOSYSTEMS ARE EXPENSIVE. SO

1399
00:56:59,840 --> 00:57:02,720
GOING FROM LEFT TO RIGHT

1400
00:57:02,720 --> 00:57:03,840
INCREASES THE COST OF BUILDING

1401
00:57:03,840 --> 00:57:05,960
THESE REPOSITORIES AND MANAGING

1402
00:57:05,960 --> 00:57:10,680
THE DATA. SO THE SPECIFICS OF

1403
00:57:10,680 --> 00:57:12,600
GENERAL REPOSITORIES ARE EASY TO

1404
00:57:12,600 --> 00:57:13,840
EWE BUT HAVE LIMITS AND

1405
00:57:13,840 --> 00:57:15,640
PARTICULARLY NEW INITIATIVES

1406
00:57:15,640 --> 00:57:18,080
BECAUSE FROM OFFICE OF DATA

1407
00:57:18,080 --> 00:57:20,240
SCIENCE, GI ECHO SYSTEM

1408
00:57:20,240 --> 00:57:22,320
INITIATIVE THEY ARE TRYING TO

1409
00:57:22,320 --> 00:57:23,680
BUILD A SYSTEM WHERE YOU CAN

1410
00:57:23,680 --> 00:57:26,560
SEARCH ACROSS SYSTEM THE

1411
00:57:26,560 --> 00:57:27,440
DIFFERENT REPOSITORIES LOOKING

1412
00:57:27,440 --> 00:57:28,880
FOR BACKGROUND OF A PARTICULAR

1413
00:57:28,880 --> 00:57:31,760
TYPE. SO WHERE ARE YOU GOING TO

1414
00:57:31,760 --> 00:57:35,640
FIND DIFFERENT REPOSITORIES ARE

1415
00:57:35,640 --> 00:57:37,400
THE (INAUDIBLE) MAYBE YOU CAN

1416
00:57:37,400 --> 00:57:39,360
JUST GO TO REPOSITORIES AND GO

1417
00:57:39,360 --> 00:57:43,360
TO ONE DISCOVERY REPOSITORIES.

1418
00:57:43,360 --> 00:57:44,760
THEN THEY GET TO BE ONE

1419
00:57:44,760 --> 00:57:47,720
PARTICULAR DATABASE.  ON SINGLE

1420
00:57:47,720 --> 00:57:49,160
PROJECT OR DISEASE REPOSITORIES,

1421
00:57:49,160 --> 00:57:52,600
ALL THE DATA FOR SINGLE USE

1422
00:57:52,600 --> 00:57:53,680
TOGETHER ALIGN IN COMMUNITY

1423
00:57:53,680 --> 00:57:57,640
BUILDING. WHICH IS NIDCR,

1424
00:57:57,640 --> 00:57:59,320
BECAUSE DISEASE FOCUS OR

1425
00:57:59,320 --> 00:58:02,760
COMMUNITY FOCUS.  EVENTUALLY

1426
00:58:02,760 --> 00:58:06,920
ECOSYSTEMS (INAUDIBLE) EACH OF

1427
00:58:06,920 --> 00:58:09,200
THE FAIR BENEFIT. SO ONE OF THE

1428
00:58:09,200 --> 00:58:11,520
IMPORTANT THINGS ABOUT

1429
00:58:11,520 --> 00:58:14,720
REPOSITORIES IS THE (INAUDIBLE)

1430
00:58:14,720 --> 00:58:17,800
IS THERE IS A GARBAGE IN GARBAGE

1431
00:58:17,800 --> 00:58:19,440
SO IF YOU DEPOSIT DATA WITHOUT

1432
00:58:19,440 --> 00:58:22,480
ANY METADATA FOR YOU IT IS GOING

1433
00:58:22,480 --> 00:58:24,360
TO NOT GET A LOT OUT OF IT SO

1434
00:58:24,360 --> 00:58:25,240
ESSENTIALLY IT IS IMPORTANT FOR

1435
00:58:25,240 --> 00:58:27,760
YOU TO SUBMIT ALL THE RICH METH

1436
00:58:27,760 --> 00:58:29,800
DATA USEFUL FOR YOUR COMMUNITY.

1437
00:58:29,800 --> 00:58:31,560
SO WE THINK A COMMUNITY --

1438
00:58:31,560 --> 00:58:32,560
WITHIN YOUR COMMUNITY THERE'S

1439
00:58:32,560 --> 00:58:34,480
STANDARDS AND PRACTICES AND YOU

1440
00:58:34,480 --> 00:58:37,200
WANT TO MAXIMIZE THAT. SO DATA

1441
00:58:37,200 --> 00:58:38,000
CENTERS HAVE BECOME EXTREMELY

1442
00:58:38,000 --> 00:58:39,320
IMPORTANT IN DATA SHARING,

1443
00:58:39,320 --> 00:58:42,120
PARTICULARLY IF YOU WANT TO SET

1444
00:58:42,120 --> 00:58:46,440
UP A BACKGROUND OR USE THE DATA.

1445
00:58:46,440 --> 00:58:49,720
SO ACCORDING TO MIRIAM WEBSTER

1446
00:58:49,720 --> 00:58:51,320
DICTIONARY, DATA STANDARD IS

1447
00:58:51,320 --> 00:58:53,000
SOMETHING THAT IS ESTABLISHED BY

1448
00:58:53,000 --> 00:58:54,360
AN AUTHORITY AS RULE OF MEASURE

1449
00:58:54,360 --> 00:58:55,920
OF QUANTITY WEIGHT EXTENT VALUE

1450
00:58:55,920 --> 00:58:58,760
OR QUALITY.  THAT'S THE

1451
00:58:58,760 --> 00:59:01,440
DEFINITION OF THE DATA STANDARD.

1452
00:59:01,440 --> 00:59:03,040
THE OTHER PART IS REGULARLY AND

1453
00:59:03,040 --> 00:59:05,840
WIDELY USED. IT IS NOT

1454
00:59:05,840 --> 00:59:08,960
SUFFICIENT TO BE A DATA STAND 

1455
00:59:08,960 --> 00:59:09,840
STANDARD.  (INAUDIBLE) WHEN YOU

1456
00:59:09,840 --> 00:59:10,880
THINK ABOUT THAT STANDARD YOU

1457
00:59:10,880 --> 00:59:14,040
WANT TO KEEP IT IN MIND DATA

1458
00:59:14,040 --> 00:59:15,840
CENTERS. SO THE QUESTION IS WHY

1459
00:59:15,840 --> 00:59:18,360
DO YOU WANT IT? IS REGULATORY

1460
00:59:18,360 --> 00:59:20,160
REQUIREMENTS.  PARTICULARLY WHEN

1461
00:59:20,160 --> 00:59:21,560
DOING CLINICAL TRIALS, WE ARE

1462
00:59:21,560 --> 00:59:24,880
ABLE TO SUBMIT YOUR TO FDA

1463
00:59:24,880 --> 00:59:27,600
REGULATIONS REQUIRED TO FOLLOW

1464
00:59:27,600 --> 00:59:29,800
DATA STANDARDS THAT'S HOW WE

1465
00:59:29,800 --> 00:59:32,080
ACCESS. SO REGULATORY STANDARDS

1466
00:59:32,080 --> 00:59:34,320
ARE IMPORTANT FOR PEOPLE TO LOOK

1467
00:59:34,320 --> 00:59:36,640
AT STANDARDS.  FOR ME WHAT IS

1468
00:59:36,640 --> 00:59:38,800
IMPORTANT IS RESEARCH DEPOSITED

1469
00:59:38,800 --> 00:59:41,320
IN THE REPOSITORY FINDING THE

1470
00:59:41,320 --> 00:59:42,600
DATA WITH SIMILAR

1471
00:59:42,600 --> 00:59:44,600
CHARACTERISTICS OR OUTCOMES IS

1472
00:59:44,600 --> 00:59:46,920
EASIER IF YOU CAN DEFINE YOUR

1473
00:59:46,920 --> 00:59:47,600
OUTCOMES AND (INAUDIBLE)

1474
00:59:47,600 --> 00:59:49,320
STANDARDS. THAT IS WHAT ALLOWS

1475
00:59:49,320 --> 00:59:52,720
ME TO SEARCH FOR THE DATA.  

1476
00:59:52,720 --> 00:59:54,760
AGAIN I WANT TO POOL THE DATA IN

1477
00:59:54,760 --> 00:59:57,320
LARGE DATA SETS, THEN AGAIN YOUR

1478
00:59:57,320 --> 00:59:58,880
STANDARDS ALLOW YOU TO SET UP

1479
00:59:58,880 --> 01:00:04,120
AND MINE THE DATA. AGAIN FOR AI

1480
01:00:04,120 --> 01:00:09,440
ML MACHINE LEARNING DATABASES

1481
01:00:09,440 --> 01:00:11,640
COME IN IMPORTANT AND MORE

1482
01:00:11,640 --> 01:00:13,080
IMPORTANTLY YOU HEARD THIS AT

1483
01:00:13,080 --> 01:00:16,200
THE NIH ECOSYSTEM WHERE THEY

1484
01:00:16,200 --> 01:00:18,480
TALK ABOUT BEING FINDABLE

1485
01:00:18,480 --> 01:00:20,520
ACCESSIBLE INTEROPERABLE,

1486
01:00:20,520 --> 01:00:22,520
REUSABLE, FAIR. ALL THESE DO NOT

1487
01:00:22,520 --> 01:00:24,720
HAVE THE DATA STANDARDS IT'S

1488
01:00:24,720 --> 01:00:25,920
HARD TO MEET REQUIREMENTS THAT

1489
01:00:25,920 --> 01:00:30,360
ARE SET FORTH BY NIH PER

1490
01:00:30,360 --> 01:00:33,520
ACCOUNT. SO WHEN YOU APPLY DATA

1491
01:00:33,520 --> 01:00:35,000
STANDARDS, START WITH CLINICAL

1492
01:00:35,000 --> 01:00:35,880
VARIABLE, CLINICAL RESEARCH

1493
01:00:35,880 --> 01:00:38,680
THAT'S ONE AREA.  DEMOGRAPHICS

1494
01:00:38,680 --> 01:00:41,520
IS YOU WANT TO ESTABLISH

1495
01:00:41,520 --> 01:00:43,440
STANDARDS AND (INAUDIBLE)

1496
01:00:43,440 --> 01:00:46,720
ANATOMY IS A USEFUL ONE BECAUSE

1497
01:00:46,720 --> 01:00:48,200
THAT DATA ALREADY EXISTS SO

1498
01:00:48,200 --> 01:00:51,720
MATTER OF FINDING PLACES AND

1499
01:00:51,720 --> 01:00:53,440
BORROWING FROM THE DATA STANDARD

1500
01:00:53,440 --> 01:00:55,440
AND THAT WAY THEY DON'T EXIST

1501
01:00:55,440 --> 01:00:58,640
THEN WE CAN CREATE SOMETHI SOME.

1502
01:00:58,640 --> 01:01:00,320
DESCRIPTION OF EXPERIMENTS ASSAY

1503
01:01:00,320 --> 01:01:02,000
TYPES, DATA MODALITIES FOR

1504
01:01:02,000 --> 01:01:04,320
MEASURING GENOMIC DATA ARE ALL

1505
01:01:04,320 --> 01:01:05,360
STANDARDS THAT ALREADY EXIST SO

1506
01:01:05,360 --> 01:01:10,120
WE CAN APPLY AND MAKE SHARING

1507
01:01:10,120 --> 01:01:15,960
AND USING MEETING. BUT HOW DO

1508
01:01:15,960 --> 01:01:17,720
YOU GO ABOUT DOING IT, AT THE

1509
01:01:17,720 --> 01:01:19,040
VERY LEAST WE CAN COME UP WITH A

1510
01:01:19,040 --> 01:01:20,880
SET OF SHARED CONTROL LISTS

1511
01:01:20,880 --> 01:01:22,160
OFFER VOCABULARY, AND THAT'S

1512
01:01:22,160 --> 01:01:23,080
ANOTHER BASE LEVEL WHICH YOU CAN

1513
01:01:23,080 --> 01:01:25,040
START ADDRESSING THE

1514
01:01:25,040 --> 01:01:25,960
STANDARDIZATION IN THE DATA.

1515
01:01:25,960 --> 01:01:29,320
THEN YOU CAN TAKE ONE STEP UP IN

1516
01:01:29,320 --> 01:01:30,760
THE ONTOLOGY WHERE ESSENTIALLY

1517
01:01:30,760 --> 01:01:33,320
YOU ARE SORT OF COMPARING ADDING

1518
01:01:33,320 --> 01:01:37,840
VALUE TO IT AND EVENTUALLY NIH

1519
01:01:37,840 --> 01:01:39,800
EFFORT FOR COMMON DATA ELEMENTS

1520
01:01:39,800 --> 01:01:41,200
WHERE ESSENTIALLY TAKES THE

1521
01:01:41,200 --> 01:01:43,600
QUESTIONS AND EXPECTS A

1522
01:01:43,600 --> 01:01:45,000
RESPONSES THAT WE HAVE AND

1523
01:01:45,000 --> 01:01:50,320
AGAIN, TRYING TO MAP WHERE THE

1524
01:01:50,320 --> 01:01:53,080
STANDARDS TO THE MAP THE WAY YOU

1525
01:01:53,080 --> 01:01:55,480
DO STANDARD APPLIED TO THE DATA

1526
01:01:55,480 --> 01:01:56,960
LEVEL AND ESSENTIALLY THIS AGAIN

1527
01:01:56,960 --> 01:01:58,560
TRYING TO MAP THE WAY YOU DO THE

1528
01:01:58,560 --> 01:02:00,720
STANDARDS TO THE IQ PYRAMID SO

1529
01:02:00,720 --> 01:02:02,160
THE BOTTOM YOU CAN SEE THE

1530
01:02:02,160 --> 01:02:02,960
CONTROL VOCABULARY CAN BE

1531
01:02:02,960 --> 01:02:06,320
APPLIED IN THE DATA LEVEL AND

1532
01:02:06,320 --> 01:02:09,480
ONTOLOGY. DATA STANDARDS

1533
01:02:09,480 --> 01:02:10,800
ONTOLOGIES, MOST PEOPLE ARE

1534
01:02:10,800 --> 01:02:13,360
PROBABLY AVAILABLE, IT'S A SLIDE

1535
01:02:13,360 --> 01:02:15,360
THAT CAN BE SHARED WITH YOU. SO

1536
01:02:15,360 --> 01:02:17,120
COMMON DATA ELEMENTS ESSENTIALLY

1537
01:02:17,120 --> 01:02:18,400
STANDARDIZED PRECISELY DEFINED

1538
01:02:18,400 --> 01:02:20,840
QUESTION, THESE ARE USED AT NIH

1539
01:02:20,840 --> 01:02:23,800
AND WIDELY ENCOURAGED IN

1540
01:02:23,800 --> 01:02:24,320
CLINICAL CLINICAL DATA AND

1541
01:02:24,320 --> 01:02:27,720
CLINICAL DATA COLLECTION. -IS

1542
01:02:27,720 --> 01:02:29,400
IDEAL IF YOU WANT TO FOSTER

1543
01:02:29,400 --> 01:02:31,800
CREATION OF CONTROLLED

1544
01:02:31,800 --> 01:02:34,840
VOCABULARIES AND TERMINOLOGIES.

1545
01:02:34,840 --> 01:02:39,160
AND USE THESE RESPECTIVELY AND

1546
01:02:39,160 --> 01:02:41,320
RETROSPECTIVELY, EXPENSIVE TO

1547
01:02:41,320 --> 01:02:43,760
APPLY RETROSPECTIVELY. MAYBE YOU

1548
01:02:43,760 --> 01:02:47,920
WANT TO USE CVs TO STANDARDIZE

1549
01:02:47,920 --> 01:02:49,280
WHAT QUESTIONS WE HAVE AND THAT

1550
01:02:49,280 --> 01:02:53,280
WAY PEOPLE CAN USE FOR

1551
01:02:53,280 --> 01:02:54,640
RESPONDING. I WANT TO

1552
01:02:54,640 --> 01:02:57,200
ACKNOWLEDGE SOME PEOPLE WHO VAN

1553
01:02:57,200 --> 01:02:59,080
WANTING THESE PEEP -- BOUNCING

1554
01:02:59,080 --> 01:03:01,560
THESE IDEAS OFF OF THEM AND HOW

1555
01:03:01,560 --> 01:03:05,720
TO PRESENT HERE AND ISHWAR, AT

1556
01:03:05,720 --> 01:03:11,240
THE NIH ODSS. HERTZANO IN

1557
01:03:11,240 --> 01:03:14,200
UNIVERSITY OF MARYLAND. O WHEN

1558
01:03:14,200 --> 01:03:17,520
WHITE ALSO WORKING WITH

1559
01:03:17,520 --> 01:03:19,360
REPOSITORIES, MICHELLE GIGLIO.

1560
01:03:19,360 --> 01:03:21,600
WITH THAT, I WILL STOP HERE.

1561
01:03:21,600 --> 01:03:23,560
>>THANK YOU VERY MUCH,
ANUP. SO

1562
01:03:23,560 --> 01:03:26,560
NOW WE WILL HEAR FROM DR. LU

1563
01:03:26,560 --> 01:03:37,160
WANG WHO WILL PRESENT VIRTUALLY 

1564
01:03:40,200 --> 01:03:41,520
>>HELLO, EVERYONE, CAN
YOU HEAR

1565
01:03:41,520 --> 01:03:42,360
ME?

1566
01:03:42,360 --> 01:03:45,240
>>YES, WE CAN, THANK YOU.

1567
01:03:45,240 --> 01:03:49,080
>>THANK YOU. LET ME DO
THE

1568
01:03:49,080 --> 01:03:56,400
SLIDE SHOW. I WILL GET STARTED.

1569
01:03:56,400 --> 01:03:57,800
FIRST OF ALL I WOULD LIKE TO

1570
01:03:57,800 --> 01:04:00,640
THANK DR. TUCCI FOR GIVING ME

1571
01:04:00,640 --> 01:04:03,680
THE OPPORTUNITY TO PRESENT TO

1572
01:04:03,680 --> 01:04:05,880
Y'ALL SOME OF THE WORK THAT

1573
01:04:05,880 --> 01:04:07,560
NIDCR HAS BEEN DOING IN TRYING

1574
01:04:07,560 --> 01:04:12,720
TO ENABLE AND ACCELERATE DATA

1575
01:04:12,720 --> 01:04:13,960
INTENSIVE TRANSLATION RESEARCH.

1576
01:04:13,960 --> 01:04:20,960
I ALSO VERY MUCH LIKE TO THANK

1577
01:04:20,960 --> 01:04:23,600
(INAUDIBLE) TORR BEING A GREAT

1578
01:04:23,600 --> 01:04:24,720
COLLEAGUE TO BRAINSTORM WAYS TO

1579
01:04:24,720 --> 01:04:28,800
BRING THE FIELD FORWARD IN DATA

1580
01:04:28,800 --> 01:04:34,640
INTENSIVE RESEARCH. AND A NUMBER

1581
01:04:34,640 --> 01:04:38,320
OF NIDCD COLLEAGUES BECKY AND WU

1582
01:04:38,320 --> 01:04:41,080
WHO HAVE BEEN HELPING PREPARE

1583
01:04:41,080 --> 01:04:44,720
FOR MY PRESENTATION. I SINCERELY

1584
01:04:44,720 --> 01:04:47,080
APOLOGIZE FOR NOT BEING ABLE TO

1585
01:04:47,080 --> 01:04:52,240
JOIN YOU IN PERSON. DUE TO

1586
01:04:52,240 --> 01:04:54,760
UNEXPECTED CONDITION LAST

1587
01:04:54,760 --> 01:04:56,200
MINUTE. GOOD AFTERNOON,

1588
01:04:56,200 --> 01:04:59,880
EVERYONE, SO I WILL GET STARTED.

1589
01:04:59,880 --> 01:05:03,640
MY TALK WILL COVER TWO RELATED

1590
01:05:03,640 --> 01:05:08,440
TOPICS, ONE HAS TO DO WITH NIDCR

1591
01:05:08,440 --> 01:05:11,160
WORK, THE DATA SCIENCE WORKING

1592
01:05:11,160 --> 01:05:15,320
GROUP WHICH IS A WORKING GROUP

1593
01:05:15,320 --> 01:05:17,760
NIDCR COUNCIL. THE OTHER IS

1594
01:05:17,760 --> 01:05:22,960
ABOUT HOW NIDCR HAS BEEN

1595
01:05:22,960 --> 01:05:25,360
FACILITATING AND DRIVING THE

1596
01:05:25,360 --> 01:05:28,560
EVOLUTION OF OUR FLAGSHIP DATA

1597
01:05:28,560 --> 01:05:33,720
REPOSITORY AS MENTIONED FAITH

1598
01:05:33,720 --> 01:05:35,920
BASED FOR PURPOSE OF ENABLING

1599
01:05:35,920 --> 01:05:43,040
TRANSLATIONAL RESEARCH. GIVE ME

1600
01:05:43,040 --> 01:05:48,320
ONE MINUTE TO ADJUST THE SCREEN 

1601
01:05:48,320 --> 01:05:54,800
SO NIDCD NIDCR IS ALSO MISSION

1602
01:05:54,800 --> 01:05:56,400
ORIENTED INSTITUTE. OUR MISSION

1603
01:05:56,400 --> 01:05:59,120
IS TO ADVANCE THE FUNDAMENTAL

1604
01:05:59,120 --> 01:06:06,280
KNOWLEDGE ABOUT DENTAL, ORAL AND

1605
01:06:06,280 --> 01:06:07,200
CRANIOFACIAL HEALTH AND DISEASE

1606
01:06:07,200 --> 01:06:10,200
AND TRANSLATE INTO PREVENTION,

1607
01:06:10,200 --> 01:06:10,720
EARLY DECK AND TREATMENT

1608
01:06:10,720 --> 01:06:12,520
STRATEGIES THAT IMPROVE OVERALL

1609
01:06:12,520 --> 01:06:15,720
HEALTH FOR ALL INDIVIDUALS AND

1610
01:06:15,720 --> 01:06:22,640
COMMUNITIES ACROSS THE LIFE SP 

1611
01:06:22,640 --> 01:06:26,720
SPAN. SO THE INSTITUTES CURRENT

1612
01:06:26,720 --> 01:06:28,120
STRATEGIC PLAN ESTABLISHED UNDER

1613
01:06:28,120 --> 01:06:33,600
THE LEADERSHIP OF OUR DIRECTOR,

1614
01:06:33,600 --> 01:06:37,960
DR. RENA DSOUZA AND DR. JENNIFER

1615
01:06:37,960 --> 01:06:43,000
WEBSTER CYRIAQUE PROVIDES FIVE

1616
01:06:43,000 --> 01:06:46,240
KEY AREAS TO INTEGRA ORAL AND

1617
01:06:46,240 --> 01:06:47,800
GENERAL HEALTH TO DEVELOP

1618
01:06:47,800 --> 01:06:49,880
PRECISION DENTAL MEDICINE TO

1619
01:06:49,880 --> 01:06:52,280
ACCELERATE THE TRANSLATION OF

1620
01:06:52,280 --> 01:06:54,040
RESEARCH AND IMPLEMENTATION OF

1621
01:06:54,040 --> 01:06:57,040
NEW DISCOVERIES INTO HEALTHCARE

1622
01:06:57,040 --> 01:07:00,240
PRACTICES AND REDUCE HEALTH

1623
01:07:00,240 --> 01:07:02,440
DISPARITIES AND EQUALITIES, TO

1624
01:07:02,440 --> 01:07:05,720
STRENGTHEN AND DIVERSIFY

1625
01:07:05,720 --> 01:07:08,360
RESEARCH PIPELINE TO EXPAND

1626
01:07:08,360 --> 01:07:11,120
PARTNERSHIPS TO IMPROVE

1627
01:07:11,120 --> 01:07:13,800
INSTITUTES REACH AND IMPACT, ALL

1628
01:07:13,800 --> 01:07:19,320
CALLING FOR ACCELERATED DATA

1629
01:07:19,320 --> 01:07:23,560
SCIENCE EFFORTS. THE DATA

1630
01:07:23,560 --> 01:07:28,720
SCIENCE PRIORITY IS NOT

1631
01:07:28,720 --> 01:07:30,880
RECOGNIZED BY ACCIDENT, IT

1632
01:07:30,880 --> 01:07:33,440
REALLY REFLECT OUR INSTITUTES

1633
01:07:33,440 --> 01:07:36,520
APPRECIATION THAT EXPONENTIAL

1634
01:07:36,520 --> 01:07:39,120
GROWTH OF DATA IN SCALE,

1635
01:07:39,120 --> 01:07:43,400
DIVERSITY, RESOLUTION AND

1636
01:07:43,400 --> 01:07:45,120
DIMENSION AND THE ADVANCES OF

1637
01:07:45,120 --> 01:07:49,760
DATA ANALYTICS AND DECREASES OF

1638
01:07:49,760 --> 01:07:52,760
DAYTIME DATA ANALYSIS TESTS ARE

1639
01:07:52,760 --> 01:07:57,040
MAKING IT PHYSICAL NOW TO STUDY

1640
01:07:57,040 --> 01:08:00,480
BIOLOGICAL SYSTEMS AND SOCIETAL

1641
01:08:00,480 --> 01:08:03,160
CHALLENGES AT A DEPTH PREVIOUSLY

1642
01:08:03,160 --> 01:08:06,280
UNIMAGINABLE OR UNATTAINABLE. SO

1643
01:08:06,280 --> 01:08:09,600
THAT REALLY GIVES US HOPE FOR

1644
01:08:09,600 --> 01:08:14,400
CONTINUING RESEARCH. SO WITH

1645
01:08:14,400 --> 01:08:16,560
THAT, APPRECIATION THE DATA

1646
01:08:16,560 --> 01:08:20,000
SCIENCE STRATEGY WORKING GROUP

1647
01:08:20,000 --> 01:08:23,200
WAS COMING LAST SEPTEMBER, AGAIN

1648
01:08:23,200 --> 01:08:27,200
SO THIS IS A WORKING GROUP OF

1649
01:08:27,200 --> 01:08:32,480
THE COUNCIL. THE WORKING GROUP

1650
01:08:32,480 --> 01:08:34,720
WAS CONVENED TO MAKE STRATEGIC

1651
01:08:34,720 --> 01:08:35,120
RECOMMENDATIONS ON

1652
01:08:35,120 --> 01:08:36,280
IMPLEMENTATION OF THE DATA

1653
01:08:36,280 --> 01:08:39,960
SCIENCE PRIORITY. WE HAVE 12

1654
01:08:39,960 --> 01:08:41,760
OUTSTANDING WORKING GROUP

1655
01:08:41,760 --> 01:08:47,600
MEMBERS FROM ACADEMIA,

1656
01:08:47,600 --> 01:08:51,520
NON-PROFIT AND INDUSTRY. WHO

1657
01:08:51,520 --> 01:08:55,040
JOINED ME IN MULTI-OMICS DATA

1658
01:08:55,040 --> 01:08:59,280
SHARING PLATFORMS INFO MA TICKS,

1659
01:08:59,280 --> 01:09:00,320
DATA TIME MODELING AND

1660
01:09:00,320 --> 01:09:01,880
SIMULATION COMPUTATIONAL

1661
01:09:01,880 --> 01:09:04,040
ENGINEERING, MACHINE LEARNING,

1662
01:09:04,040 --> 01:09:06,360
ET CETERA. WHICH THEY APPLY TO

1663
01:09:06,360 --> 01:09:08,480
BIOMEDICAL AND BEHAVIORAL

1664
01:09:08,480 --> 01:09:11,120
RESEARCH AS WELL AS PRODUCT

1665
01:09:11,120 --> 01:09:17,120
DEVELOPMENT IN NIDCR MISSION

1666
01:09:17,120 --> 01:09:24,720
AREAS. DR. AXEL VISEL AND AMY

1667
01:09:24,720 --> 01:09:26,840
SLEP ARE WORKING MEMBERS IN THIS

1668
01:09:26,840 --> 01:09:29,520
WORKING GROUP AND DR. VISEL IS

1669
01:09:29,520 --> 01:09:32,960
THE WORKING GROUP CHAIR AND DR.

1670
01:09:32,960 --> 01:09:38,040
(INAUDIBLE) IS HIS CO-CHAIR.

1671
01:09:38,040 --> 01:09:38,680
THIS WORKING GROUP MORE

1672
01:09:38,680 --> 01:09:41,080
SPECIFICALLY IS CHARGED WITH

1673
01:09:41,080 --> 01:09:42,320
PROVIDING RECOMMENDATIONS FOR

1674
01:09:42,320 --> 01:09:45,480
WELL INFORMED AND WELL REASONED

1675
01:09:45,480 --> 01:09:48,600
DATA SCIENCE STRATEGY TO ENABLE

1676
01:09:48,600 --> 01:09:51,800
TO REALIZE POTENTIAL OF DATA

1677
01:09:51,800 --> 01:09:53,360
SCIENCE IN THE ADVANCING THE

1678
01:09:53,360 --> 01:09:56,360
FULL TRANSLATIONAL SPECTRUM OF

1679
01:09:56,360 --> 01:09:58,840
DENTAL ORAL AND CRANIOFACIAL

1680
01:09:58,840 --> 01:10:01,440
RESEARCH REDUCING HEALTH

1681
01:10:01,440 --> 01:10:04,560
DISPARITIES AND INEQUALITIES AND

1682
01:10:04,560 --> 01:10:05,480
IMPROVING ORAL HEALTH. OVERALL

1683
01:10:05,480 --> 01:10:14,600
HEALTH. GIVEN THAT SCOPE OUR

1684
01:10:14,600 --> 01:10:15,800
MEMBERSHIP SELECTION AND

1685
01:10:15,800 --> 01:10:18,600
IMPLEMENTATIONS TARGETED EXPERTS

1686
01:10:18,600 --> 01:10:21,280
WHOSE RESEARCH FOCI ALIGN WITH

1687
01:10:21,280 --> 01:10:25,160
POOR TRANSLATIONAL CONTINUUM

1688
01:10:25,160 --> 01:10:26,520
HAVING BASIC DISCOVERY RESEARCH

1689
01:10:26,520 --> 01:10:29,240
AND TRANSLATION OF DISCOVERIES

1690
01:10:29,240 --> 01:10:31,760
TO INDIVIDUAL HUMANS AND

1691
01:10:31,760 --> 01:10:36,480
PATIENTS TO CLINICAL PRACTICE

1692
01:10:36,480 --> 01:10:38,720
AND ULTIMATELY THE HOUSE OF THE

1693
01:10:38,720 --> 01:10:43,560
PUBLIC OR THEY ARE REFERRED TO

1694
01:10:43,560 --> 01:10:49,880
AS T TO 4 (INAUDIBLE) AS SHOWN

1695
01:10:49,880 --> 01:10:51,280
HERE EACH TEAM LEVEL IS

1696
01:10:51,280 --> 01:10:52,880
REPRESENTED BY FIVE OR MORE

1697
01:10:52,880 --> 01:10:57,720
EXPERTS OF THE WORKING GROUP.

1698
01:10:57,720 --> 01:11:02,360
AND N -- SO ALL THE EX-OFFICIO

1699
01:11:02,360 --> 01:11:07,680
MEMBERS FROM NIDCR THAT WERE

1700
01:11:07,680 --> 01:11:15,480
WORKING GROUP CLOSELY, DR. KING,

1701
01:11:15,480 --> 01:11:19,560
DIRECTOR OF THE DIVISION OF

1702
01:11:19,560 --> 01:11:21,480
DIRECTOR OF DIVISION OF

1703
01:11:21,480 --> 01:11:24,200
EXTRAMURAL UNTILES SERVING AS

1704
01:11:24,200 --> 01:11:25,320
COUNCIL EXECUTIVE SECRETARY IS

1705
01:11:25,320 --> 01:11:26,680
ONE OF US THEN FOUR PROGRAM

1706
01:11:26,680 --> 01:11:29,760
STAFF MEMBERSES WHO JOINED

1707
01:11:29,760 --> 01:11:30,520
JOINTLY OVERSEE INITIATIVES AND

1708
01:11:30,520 --> 01:11:34,080
ACTIVITIES IN DATA SCIENCE AND

1709
01:11:34,080 --> 01:11:36,760
IMPLEMENTATION OF THE 2023 NIH

1710
01:11:36,760 --> 01:11:39,320
DATA MANAGEMENT AND SHARING

1711
01:11:39,320 --> 01:11:42,400
POLICY. AND OUR HEALTH

1712
01:11:42,400 --> 01:11:45,920
DISPARITIES AND INEQUALITIES

1713
01:11:45,920 --> 01:11:48,240
PROGRAM AN GENOMICS. AS WELL AS

1714
01:11:48,240 --> 01:11:50,440
OUR TECHNOLOGY OFFICER WHO

1715
01:11:50,440 --> 01:11:53,880
PLACED A KEY ROLE IN ADOPTION

1716
01:11:53,880 --> 01:11:56,080
INFORMATION TECHNOLOGY FOR

1717
01:11:56,080 --> 01:11:57,440
INSTITUTE, WITH WORKING IN THE

1718
01:11:57,440 --> 01:11:59,720
GROUP IN THE PAST 12 MONTHS OR

1719
01:11:59,720 --> 01:12:05,240
SO AND IT'S BEEN A SUPER

1720
01:12:05,240 --> 01:12:09,800
PRODUCTIVE PERIOD. HERE IS A

1721
01:12:09,800 --> 01:12:16,280
BRIEF UPDATE. THE WORKING -- IT

1722
01:12:16,280 --> 01:12:18,800
IS AMAZING THAT OUR WORKING

1723
01:12:18,800 --> 01:12:22,640
MEMBERS HAVE BEEN PUTTING SO

1724
01:12:22,640 --> 01:12:30,440
MUCH EFFORTS SO THERE HAVE BEEN

1725
01:12:30,440 --> 01:12:33,640
(INAUDIBLE) THE SUB WORKING WITH

1726
01:12:33,640 --> 01:12:35,080
GROUP TASKED TO COMPLETE A

1727
01:12:35,080 --> 01:12:37,720
DEFINED SHORT PERIOD ALSO MEET

1728
01:12:37,720 --> 01:12:39,720
WHENEVER POSSIBLE AND

1729
01:12:39,720 --> 01:12:41,800
RECOGNIZING THE DATA NEEDS FOR

1730
01:12:41,800 --> 01:12:44,560
RESEARCH, THE WORKING GROUP

1731
01:12:44,560 --> 01:12:46,120
INITIALLY FOCUSED ON ASSESSING

1732
01:12:46,120 --> 01:12:49,520
DENTAL ORAL AND CRANIOFACIAL

1733
01:12:49,520 --> 01:12:53,400
DATA AVAILABILITY WHICH REVEALED

1734
01:12:53,400 --> 01:12:55,400
ALMOST AS ANTICIPATED MAJOR

1735
01:12:55,400 --> 01:12:57,840
COMPLEXITY AND A NEED TO GET

1736
01:12:57,840 --> 01:13:00,800
MORE INFORMATION FROM OUR

1737
01:13:00,800 --> 01:13:03,120
CONSTITUENCIES DATA GENERATORS.

1738
01:13:03,120 --> 01:13:04,880
AND SOME ARE DATA CONTRIBUTORS

1739
01:13:04,880 --> 01:13:09,800
IN OUR DATA USERS. AS SUCH A

1740
01:13:09,800 --> 01:13:11,560
REQUEST FOR INFORMATION OR IFI

1741
01:13:11,560 --> 01:13:15,960
WAS PUBLISHED BY NIDCR.

1742
01:13:15,960 --> 01:13:20,160
QUESTIONS WERE ASKED IN THREE

1743
01:13:20,160 --> 01:13:23,520
AREAS. THE FIRST IS ABOUT DATA

1744
01:13:23,520 --> 01:13:25,440
TRANSFORMATION STORAGE,

1745
01:13:25,440 --> 01:13:28,720
PRESERVATION AND SHARING

1746
01:13:28,720 --> 01:13:30,440
PROCESSES. THE SECOND IS ABOUT

1747
01:13:30,440 --> 01:13:33,280
DATA TYPES BEING COLLECTED AND

1748
01:13:33,280 --> 01:13:37,160
RESEARCH CORE FACILITIES AND

1749
01:13:37,160 --> 01:13:38,440
INDEPENDENT LABORATORIES AND

1750
01:13:38,440 --> 01:13:40,440
HOSPITAL RESEARCH CENTERS AND

1751
01:13:40,440 --> 01:13:44,960
THE LAST AREA HAS TO DO WITH

1752
01:13:44,960 --> 01:13:46,840
STANDARDS FOR SCIENTIFIC DATA

1753
01:13:46,840 --> 01:13:49,520
AND INCLUDING METADATA THAT

1754
01:13:49,520 --> 01:13:52,920
ENABLE THE REUSE OF THE SHARED

1755
01:13:52,920 --> 01:13:55,720
DATA TO ENHANCE RESEARCH IN

1756
01:13:55,720 --> 01:14:01,640
CLINICAL CARE. IFI IS EXPIRED

1757
01:14:01,640 --> 01:14:03,760
LATER IN THE MONTH, THE

1758
01:14:03,760 --> 01:14:06,840
RESPONSES RECEIVE WILL BE

1759
01:14:06,840 --> 01:14:08,960
ANALYZED BY STAFF TO FORM

1760
01:14:08,960 --> 01:14:11,200
WORKING GROUPS RECOMMENDATION.

1761
01:14:11,200 --> 01:14:15,360
ASIDE FROM IFI HAVE WORKING

1762
01:14:15,360 --> 01:14:18,560
GROUP NIDCR MOSTED TWO 90 MINUTE

1763
01:14:18,560 --> 01:14:21,240
LISTENING SESSIONS IN JULY. EACH

1764
01:14:21,240 --> 01:14:25,640
WITH A DOZEN OR SO MORE INVITED

1765
01:14:25,640 --> 01:14:27,200
COMMUNITY PARTICIPANTS.

1766
01:14:27,200 --> 01:14:29,280
QUESTIONS ASKED OF THE

1767
01:14:29,280 --> 01:14:30,880
PARTICIPANTS WERE SIMILAR TO

1768
01:14:30,880 --> 01:14:35,400
THOSE IN RFI, BOTH SESSIONS WERE

1769
01:14:35,400 --> 01:14:39,160
VERY REAL ATTENDED AND THE

1770
01:14:39,160 --> 01:14:41,160
CHALLENGES AND OPPORTUNITIES AND

1771
01:14:41,160 --> 01:14:43,880
DATA AVAILABILITY DATE

1772
01:14:43,880 --> 01:14:47,160
REPOSITORIES STANDARDS AND USE

1773
01:14:47,160 --> 01:14:48,880
TOOLS THAT REVEAL SESSIONS

1774
01:14:48,880 --> 01:14:54,680
HIGHLY INFORMATIVE. IN FACT

1775
01:14:54,680 --> 01:14:56,960
WHILE THE LATEST PROGRESS UPDATE

1776
01:14:56,960 --> 01:14:59,000
YESTERDAY'S NIDCR COUNCIL

1777
01:14:59,000 --> 01:15:01,920
ROUTINE, THE WORKING GROUP

1778
01:15:01,920 --> 01:15:04,240
CHAIR, DR. VISEL PRESENTED THE

1779
01:15:04,240 --> 01:15:06,600
TAKE HOME MESSAGES FROM THE

1780
01:15:06,600 --> 01:15:12,640
LISTENING SESSIONS. SO THE NEXT

1781
01:15:12,640 --> 01:15:16,080
STEPS FOR THE WORKING GROUP

1782
01:15:16,080 --> 01:15:19,280
BRAINSTORMING AND WRITING UP AND

1783
01:15:19,280 --> 01:15:23,600
RECOMMENDING STRATEGIC

1784
01:15:23,600 --> 01:15:25,680
DIRECTIONS THE NEXT JANUARY

1785
01:15:25,680 --> 01:15:29,200
MEETING FOR NIDCR CONSIDERATION

1786
01:15:29,200 --> 01:15:32,880
AND ALSO MORE BROAD PUBLIC

1787
01:15:32,880 --> 01:15:35,880
DISSEMINATION OF THEIR

1788
01:15:35,880 --> 01:15:39,480
RECOMMENDATIONSS. SO WHILE

1789
01:15:39,480 --> 01:15:41,480
WORKING GROUP RECOMMENDATION IS

1790
01:15:41,480 --> 01:15:46,840
PENDING NIDCR FUNDING PROGRAM

1791
01:15:46,840 --> 01:15:47,880
DATA SCIENCE COMPUTATIONAL

1792
01:15:47,880 --> 01:15:50,880
BIOLOGY AN BIOINFORMATICS

1793
01:15:50,880 --> 01:15:54,160
CONTINUES TO EVOLVE QUICKLY.

1794
01:15:54,160 --> 01:15:56,840
THIS IS FIVE-YEAR-OLD PROGRAM

1795
01:15:56,840 --> 01:15:59,120
THAT HAS STARTED TO AFTER

1796
01:15:59,120 --> 01:16:02,480
JOINING NIDCR, THE PROGRAM IS

1797
01:16:02,480 --> 01:16:08,080
NOW OVERSEEN BY DR. OKI

1798
01:16:08,080 --> 01:16:09,640
VOLUNTEER PHYSICIAN BY TRAINING.

1799
01:16:09,640 --> 01:16:11,800
A TALENT VERY CRUCIAL FOR THE

1800
01:16:11,800 --> 01:16:13,080
INSTITUTE TO GROW DATA SCIENCE.

1801
01:16:13,080 --> 01:16:17,240
I MUST SAY I'M VERY PROUD THAT I

1802
01:16:17,240 --> 01:16:21,280
WAS ABLE TO RECRUIT DR. OKI FOR

1803
01:16:21,280 --> 01:16:24,800
MY INSTITUTE, WE ALL FACE THE

1804
01:16:24,800 --> 01:16:27,760
CHALLENGE TALENTS AND DATA

1805
01:16:27,760 --> 01:16:30,520
SCIENCE HARD TO FIND RECRUIT AND

1806
01:16:30,520 --> 01:16:33,040
RETAIN SO THE DATA SCIENCE

1807
01:16:33,040 --> 01:16:36,800
PROGRAM INTERSECTS ALL OTHER

1808
01:16:36,800 --> 01:16:40,680
FUNDING PROGRAMS AT NIDCR THAT

1809
01:16:40,680 --> 01:16:45,000
IS AIMED TO FACILITATE DIVERSE

1810
01:16:45,000 --> 01:16:46,680
FACIAL ORRILL CRANIOFACIAL

1811
01:16:46,680 --> 01:16:47,960
RESEARCH ACROSS THE

1812
01:16:47,960 --> 01:16:50,720
TRANSLATIONAL SPECTRUM BY

1813
01:16:50,720 --> 01:16:52,360
PROMOTING DATA DIVERSITY

1814
01:16:52,360 --> 01:16:55,080
AVAILABILITY AND REUSABILITY. BY

1815
01:16:55,080 --> 01:16:58,200
SUPPORTING DATA REPOSITORIES AND

1816
01:16:58,200 --> 01:17:00,320
DATA USE TOOLS AND BY NURTURING

1817
01:17:00,320 --> 01:17:02,760
DIVERSE INVESTIGATORS IN ORAL

1818
01:17:02,760 --> 01:17:05,960
HEALTH PROFESSIONALS. TODAY THE

1819
01:17:05,960 --> 01:17:08,880
PORTFOLIO USES A VARIETY OF

1820
01:17:08,880 --> 01:17:12,600
FUNDING PROGRAMS TO SUPPORT

1821
01:17:12,600 --> 01:17:15,240
PROJECTS, DATA REPOSITORIES,

1822
01:17:15,240 --> 01:17:17,240
STANDARDS, TOOLS FOR DATA

1823
01:17:17,240 --> 01:17:19,800
SHARING, CLINICAL APPLICATIONS,

1824
01:17:19,800 --> 01:17:24,960
AND AS WELL AS DATA SCIENCE

1825
01:17:24,960 --> 01:17:28,760
ETHICS. ALSO LIKE TO MENTION

1826
01:17:28,760 --> 01:17:31,840
FIRST AREA THAT WE SUPPORT THAT

1827
01:17:31,840 --> 01:17:35,320
IS THE DEVELOPMENT OF IMAGE AND

1828
01:17:35,320 --> 01:17:40,480
AI BASE MODAL DEVICES FOR EARLY

1829
01:17:40,480 --> 01:17:44,040
SCREENING OF CRANIO

1830
01:17:44,040 --> 01:17:46,000
MALFORMATIONS AT CARE AND

1831
01:17:46,000 --> 01:17:50,560
DIGITAL PATHOLOGY BUT WE DO HAVE

1832
01:17:50,560 --> 01:17:55,680
SBIR SUPPORTED PROJECTS PROVIDED

1833
01:17:55,680 --> 01:17:57,360
PRODUCTS THAT WERE ALREADY

1834
01:17:57,360 --> 01:17:58,160
INDUCED DURING THE PANDEMIC

1835
01:17:58,160 --> 01:18:04,840
PERIOD.  NOW I WOULD LIKE TO

1836
01:18:04,840 --> 01:18:06,840
SWITCH GEARS TO THE SECOND PART,

1837
01:18:06,840 --> 01:18:12,680
I WILL TRY TO FIRST TO SAY NOT

1838
01:18:12,680 --> 01:18:14,120
WAYING MY TIME. OPT DATABASE

1839
01:18:14,120 --> 01:18:16,720
FROM NIDCR INITIATED PHYSICS

1840
01:18:16,720 --> 01:18:21,200
PROGRAM IN 2009, SUPPORTED

1841
01:18:21,200 --> 01:18:25,800
MULTIPLE RESEARCH PROJECTS ALSO

1842
01:18:25,800 --> 01:18:30,200
KNOWN AS SPOKES AND DATA HUB TO

1843
01:18:30,200 --> 01:18:32,880
PUBLICLY SHARE DATA DEVELOPMENT,

1844
01:18:32,880 --> 01:18:36,720
THE PROGRAM WE USED IN 2014

1845
01:18:36,720 --> 01:18:39,920
SUPPORTING NEW SPOKES AND NEW

1846
01:18:39,920 --> 01:18:43,840
DATA HUB. THE HUB WAS RENEWED IN

1847
01:18:43,840 --> 01:18:48,080
2019. THAT WAS WHEN THE PROGRAM

1848
01:18:48,080 --> 01:18:50,560
TRANSITION TO A HUB ONLY MODEL

1849
01:18:50,560 --> 01:18:53,240
WHEN I BECAME DIRECTOR OF THE

1850
01:18:53,240 --> 01:18:58,200
FAITH BASED PROGRAM. IT HAS

1851
01:18:58,200 --> 01:19:01,800
BUSINESSES HAS BEEN LARGE WILY

1852
01:19:01,800 --> 01:19:04,120
RECRUITING SCIENTIFIC DATA FROM

1853
01:19:04,120 --> 01:19:07,440
NIDCR INVESTIGATORS AND

1854
01:19:07,440 --> 01:19:09,600
GRANTEES. SINCE 2019 AND

1855
01:19:09,600 --> 01:19:12,120
PUBLICLY SHARE THE DATA. OVER

1856
01:19:12,120 --> 01:19:14,920
TIME THE DATA COVERAGE OF

1857
01:19:14,920 --> 01:19:17,240
DEVELOPMENTAL STAGES ANATOMICAL

1858
01:19:17,240 --> 01:19:21,600
SITES DISORDERS, BIOLOGICAL

1859
01:19:21,600 --> 01:19:23,840
LEVELS AND MODEL ORGANISMS HAVE

1860
01:19:23,840 --> 01:19:26,800
LARGELY EXPANDED IN THE OFFERING

1861
01:19:26,800 --> 01:19:30,560
OF EXPERIMENTAL DATA OUTPUTS

1862
01:19:30,560 --> 01:19:31,880
GENERATED OUTING CUTTING EDGE

1863
01:19:31,880 --> 01:19:33,560
TECHNOLOGY PLATFORMS HAS

1864
01:19:33,560 --> 01:19:36,640
CONTINUED TO INCREASE. THE TOOLS

1865
01:19:36,640 --> 01:19:38,120
THAT SERVE THE DATA CONTRIBUTORS

1866
01:19:38,120 --> 01:19:40,320
AND USERS HAVE KEPT IMPROVING

1867
01:19:40,320 --> 01:19:44,720
AND EXPANDING INCLUDING FOR

1868
01:19:44,720 --> 01:19:48,520
EXAMPLE SELF-CURATION OF DATA BY

1869
01:19:48,520 --> 01:19:49,680
CONTRIBUTORS CAPABILITY TO MAKE

1870
01:19:49,680 --> 01:19:52,120
THE SHARED DATA AI MACHINE

1871
01:19:52,120 --> 01:19:58,240
LEARNING AND DEEP LEARNING READY

1872
01:19:58,240 --> 01:20:00,640
AND COMPLIANCE TO THE FAIR AND

1873
01:20:00,640 --> 01:20:02,440
TRUST PRINCIPLES AND IMPORTANTLY

1874
01:20:02,440 --> 01:20:06,240
DATA ARE TREATED AS CITE HAD

1875
01:20:06,240 --> 01:20:10,600
BEEN EPIDEMIC WITH ARCHIVE

1876
01:20:10,600 --> 01:20:16,000
DIGITAL IDENTIFIERS AND EARLIER

1877
01:20:16,000 --> 01:20:19,080
THIS YEAR THE REPOSITORY

1878
01:20:19,080 --> 01:20:21,080
SUCCESSFULLY MIGHT REACH THE

1879
01:20:21,080 --> 01:20:23,240
CLOUD. IT IS ALSO WORSE NOTING

1880
01:20:23,240 --> 01:20:25,880
THAT SOME OF THESE PICTURES --

1881
01:20:25,880 --> 01:20:31,160
FEATURES THAT ARE DESIRABLE HAVE

1882
01:20:31,160 --> 01:20:33,200
RESULTED FROM MULTIPLE FAITH

1883
01:20:33,200 --> 01:20:37,960
BASED PROJECTS, SUPPLEMENTED BY

1884
01:20:37,960 --> 01:20:42,240
NIH DATA SCIENCE STRATEGY. IN

1885
01:20:42,240 --> 01:20:45,200
THE PAST THREE YEARS. SO TODAY

1886
01:20:45,200 --> 01:20:49,880
FAITH BASED IS THE CENTRAL

1887
01:20:49,880 --> 01:20:52,600
REPOSITORY OF DENTAL ORAL AND

1888
01:20:52,600 --> 01:20:54,200
CRANIOFACIAL DATA SETS GENERATED

1889
01:20:54,200 --> 01:20:56,920
USING A VARIETY OF MOLECULAR

1890
01:20:56,920 --> 01:21:00,520
CELLULAR GENOMIC AND IMAGING

1891
01:21:00,520 --> 01:21:04,440
TECHNOLOGIES DISRUPTED

1892
01:21:04,440 --> 01:21:06,360
DEVELOPMENT IN MULTIPLE MODEL

1893
01:21:06,360 --> 01:21:09,600
ORGANISMS AND MULTIPLE

1894
01:21:09,600 --> 01:21:14,000
DIMENSIONS THE REPOSITORY OFFERS

1895
01:21:14,000 --> 01:21:14,640
THROUGHOUT MENTAL (INAUDIBLE)

1896
01:21:14,640 --> 01:21:17,240
GROWING COLLECTION OF HUMAN

1897
01:21:17,240 --> 01:21:18,960
FACIAL IMAGES AND BOTH

1898
01:21:18,960 --> 01:21:23,480
ACCOMPANIED WITH SEQUENCE

1899
01:21:23,480 --> 01:21:26,480
INFORMATION AND HAVE OPPORTUNITY

1900
01:21:26,480 --> 01:21:28,360
DIAGNOSTICS. AMONG STANDARDS

1901
01:21:28,360 --> 01:21:33,240
THAT FAITH BASED USES ONTOLOGY

1902
01:21:33,240 --> 01:21:36,120
OF CRANIOFACIAL DEVELOPMENT AND

1903
01:21:36,120 --> 01:21:38,000
MALFORMATION WHICH IS SUPPORTED

1904
01:21:38,000 --> 01:21:38,800
DURING THE INITIAL FUNDING

1905
01:21:38,800 --> 01:21:42,800
PERIOD.  AND MOTH DATA ARE

1906
01:21:42,800 --> 01:21:46,600
AVAILABLE PUBLICLY VIA OPEN

1907
01:21:46,600 --> 01:21:48,760
ACCESS. IDENTIFIABLE OR

1908
01:21:48,760 --> 01:21:50,440
POTENTIALLY IDENTIFIABLE HUMAN

1909
01:21:50,440 --> 01:21:52,200
DERIVED DATA ARE PUBLICLY

1910
01:21:52,200 --> 01:21:54,680
AVAILABLE SO CONTROL ACCESS FOR

1911
01:21:54,680 --> 01:21:56,520
THE PURPOSE OF ENSURING

1912
01:21:56,520 --> 01:21:59,640
APPROPRIATE DATA SHARING AND

1913
01:21:59,640 --> 01:22:02,960
REUSE AND I CO-CHAIR THAT NIDCR

1914
01:22:02,960 --> 01:22:07,840
DATA ACCESS COMING TO THAT

1915
01:22:07,840 --> 01:22:10,760
REALLY IS THE BODY THAT RAN

1916
01:22:10,760 --> 01:22:11,440
APPROPRIATE DATA ACCESS

1917
01:22:11,440 --> 01:22:16,880
REQUESTS.  AND I ALSO WANT TO

1918
01:22:16,880 --> 01:22:19,560
MENTION THAT ANNUAL MEETING

1919
01:22:19,560 --> 01:22:23,520
FORMS ARE ORGANIZED BY THE PHASE

1920
01:22:23,520 --> 01:22:25,560
SPACE IS INCREASINGLY -- FACE

1921
01:22:25,560 --> 01:22:28,320
BASE IS INCREASINGLY FOCUSED

1922
01:22:28,320 --> 01:22:33,640
COMMUNITY OUTREACH TO NETWORK OF

1923
01:22:33,640 --> 01:22:37,520
DATA CONTRIBUTORS AND DATA USERS

1924
01:22:37,520 --> 01:22:40,240
ACROSS THE TRANSLATIONAL

1925
01:22:40,240 --> 01:22:43,680
CONTINUUM. THE NEWLY INITIATED

1926
01:22:43,680 --> 01:22:46,520
OFFICE HOURS ARE VERY POPULAR

1927
01:22:46,520 --> 01:22:48,880
FOR INVESTIGATORS WHO ARE

1928
01:22:48,880 --> 01:22:53,200
INTERESTED IN USING FACE BASE AS

1929
01:22:53,200 --> 01:22:58,640
REPOSITORY TO -- FOR THEM TO

1930
01:22:58,640 --> 01:23:01,760
MEET THE NIH DATA MANAGEMENT AND

1931
01:23:01,760 --> 01:23:05,400
SHARING POLICY REQUIREMENT AND

1932
01:23:05,400 --> 01:23:11,560
ALSO FOR DATA USERS.  SO QUICKLY

1933
01:23:11,560 --> 01:23:14,560
I WILL MENTION I WILL SHARE

1934
01:23:14,560 --> 01:23:16,120
INFORMATION SOME DATA IN THE

1935
01:23:16,120 --> 01:23:18,720
FACE BASE THAT MAYBE OF INTEREST

1936
01:23:18,720 --> 01:23:21,800
SINCE TALKING TO OUR NIDCD

1937
01:23:21,800 --> 01:23:26,400
COLLEAGUES AND EXPERTS.  SO WE

1938
01:23:26,400 --> 01:23:32,720
HAVE CRANIO SYNSTOSIS DATA THAT

1939
01:23:32,720 --> 01:23:33,840
INCLUDES GENOTYPE GENE

1940
01:23:33,840 --> 01:23:35,240
EXPRESSION AND MORE FOE METRIC

1941
01:23:35,240 --> 01:23:39,760
ANALYSIS ET CETERA.  THERE IS

1942
01:23:39,760 --> 01:23:43,400
ALSO ORAL FACIAL FACE BASE

1943
01:23:43,400 --> 01:23:48,280
MULTIPLE DATA TYPES, AND WHAT IS

1944
01:23:48,280 --> 01:23:51,160
NOT SHOWN HERE IS A DATA SET IN

1945
01:23:51,160 --> 01:23:54,600
THE PROCESS OF BEING UPLOADED

1946
01:23:54,600 --> 01:23:58,880
AND SHARED FROM MULTI-CENTER

1947
01:23:58,880 --> 01:24:03,240
OBSERVATORY STUDY HELP FACIAL

1948
01:24:03,240 --> 01:24:06,640
MICROSONIA. AND WE ARE ALSO

1949
01:24:06,640 --> 01:24:07,600
NOTICE CUSHION ABOUT UPLOADING

1950
01:24:07,600 --> 01:24:11,560
AND SHARING SOME SPEECH THERAPY

1951
01:24:11,560 --> 01:24:16,920
PROJECTS FUNDED BY NIDCR AND

1952
01:24:16,920 --> 01:24:20,480
PERHAPS OTHER NIH INSTITUTES IN

1953
01:24:20,480 --> 01:24:27,360
A COUPLE OF MONTHS AGO AN

1954
01:24:27,360 --> 01:24:28,600
INVESTIGATOR STARTING HEARING

1955
01:24:28,600 --> 01:24:32,360
LOSS AT USC AND THE FACE BASE

1956
01:24:32,360 --> 01:24:34,160
TEAM THERE STARTED TO EXPLORE IF

1957
01:24:34,160 --> 01:24:37,040
THEY CAN HANDLE AUDIO GRAM DATA

1958
01:24:37,040 --> 01:24:41,160
WHICH WOULD MAKE THE 40TH DATA

1959
01:24:41,160 --> 01:24:44,320
OUTPUT TYPE THAT FACE BASE

1960
01:24:44,320 --> 01:24:47,160
ACCOMMODATES. AS OF THIS THE

1961
01:24:47,160 --> 01:24:48,640
ANSWER IS YES AS SHOWN IN THIS

1962
01:24:48,640 --> 01:24:51,000
AND THE NEXT SLIDES. THE SLIDES

1963
01:24:51,000 --> 01:24:53,560
ARE PROVIDED BY THE FACE BASE

1964
01:24:53,560 --> 01:24:58,240
TEAM AT USC. I DO APOLOGIZE FOR

1965
01:24:58,240 --> 01:25:02,760
THE SMALLER FONT. ESSENTIALLY

1966
01:25:02,760 --> 01:25:07,680
THE FACE BASE TEAM WOULD LIKE TO

1967
01:25:07,680 --> 01:25:09,400
DELIVER TO THIS AUDIENCE IS THE

1968
01:25:09,400 --> 01:25:11,600
DATABASE IS NOW IN FACE BASE

1969
01:25:11,600 --> 01:25:17,520
THAT INCLUDES PROAPOLOGETIC

1970
01:25:17,520 --> 01:25:18,080
DESCRIPTION, CLINICAL ASSAY

1971
01:25:18,080 --> 01:25:19,800
RESPONSE TO IDENTIFY HUMAN

1972
01:25:19,800 --> 01:25:22,200
FORMATION AND PROJECT

1973
01:25:22,200 --> 01:25:25,120
INFORMATION DEMOGRAPHICS AND

1974
01:25:25,120 --> 01:25:28,760
ASSAY DETAILS. RAW AUDIO GRAM

1975
01:25:28,760 --> 01:25:32,880
DATA INCLUDES THE AUDIO GRAM

1976
01:25:32,880 --> 01:25:34,320
FILE GENERATED FROM THE

1977
01:25:34,320 --> 01:25:36,680
EVALUATION VISIT AND ADDITIONAL

1978
01:25:36,680 --> 01:25:42,400
ASSOCIATED METADATA. THE PROCESS

1979
01:25:42,400 --> 01:25:43,760
AUDIO GRAM DATA ARE PRODUCED BY

1980
01:25:43,760 --> 01:25:46,840
TOOLS THAT EXTRACT FEATURES FROM

1981
01:25:46,840 --> 01:25:49,920
THE ROUTINE RECORD AND GENERATE

1982
01:25:49,920 --> 01:25:55,200
STRUCTURED DATA OF THE MEASURES

1983
01:25:55,200 --> 01:25:57,960
AND EVEN SOME VISUALIZATION

1984
01:25:57,960 --> 01:25:59,640
PLOTS.  HERE YOU CAN SEE THE

1985
01:25:59,640 --> 01:26:01,960
ROLE OF DATA AND THE PROCESS

1986
01:26:01,960 --> 01:26:06,880
PLOTS. THE FACE BASE TEAM ARE

1987
01:26:06,880 --> 01:26:13,480
VERY HAPPY TO TALK WITH ANY

1988
01:26:13,480 --> 01:26:15,640
INTERESTED GROUPS FROM THE

1989
01:26:15,640 --> 01:26:19,280
INSTITUTE AND YOUR GRANTEE AND

1990
01:26:19,280 --> 01:26:21,080
YOUR INTRAMURAL GROUPS TO

1991
01:26:21,080 --> 01:26:23,520
FURTHER EXPLAIN HOW THEY COULD

1992
01:26:23,520 --> 01:26:29,720
BE OF ASSISTANCE FOR YOU TO USE

1993
01:26:29,720 --> 01:26:33,080
FACE BASE POSSIBLY AS REPOSITORY

1994
01:26:33,080 --> 01:26:37,360
TO MEET THE DMS REQUIREMENT.

1995
01:26:37,360 --> 01:26:41,520
THIS IS A SLIDE --

1996
01:26:41,520 --> 01:26:43,800
>>DR. WONG, DO YOU MIND
IF

1997
01:26:43,800 --> 01:26:45,560
MAYBE WE CAN MOVE TO SOME

1998
01:26:45,560 --> 01:26:46,920
DISCUSSION? THIS IS REALLY

1999
01:26:46,920 --> 01:26:48,080
INTERESTING, I WANT TO MAKE SURE

2000
01:26:48,080 --> 01:26:51,720
THAT WE DO HAVE SOME TIME TO

2001
01:26:51,720 --> 01:26:52,640
DISCUSS WHAT YOU HAVE BEEN

2002
01:26:52,640 --> 01:26:55,600
TALKING ABOUT IN THE CONTEXT OF

2003
01:26:55,600 --> 01:26:58,120
NIDCD. I THINK ESPECIALLY THE

2004
01:26:58,120 --> 01:26:59,920
AUDIO METRIC DATA YOU JUST

2005
01:26:59,920 --> 01:27:03,560
PRESENTED IS REALLY A GREAT

2006
01:27:03,560 --> 01:27:05,360
INTEREST TO US. I WOULD LIKE TO

2007
01:27:05,360 --> 01:27:09,920
BE ABLE TO PUT IT IN SOME TEXT

2008
01:27:09,920 --> 01:27:11,520
GRADGRADGRADE.

2009
01:27:11,520 --> 01:27:15,400
>>SURE. HAPPY TO SHARE
THESE

2010
01:27:15,400 --> 01:27:16,000
SLIDES, PARTICULARLY THIS ONE

2011
01:27:16,000 --> 01:27:19,000
INTERESTED IN TAKING A LOOK. I'M

2012
01:27:19,000 --> 01:27:29,520
AVAILABLE FOR QUESTIONS.  DR.

2013
01:27:30,280 --> 01:27:31,880
THIBEAULT, WHICH ARE GOING SO TO

2014
01:27:31,880 --> 01:27:33,800
HAVE SOME DISCUSSION AND WE HAVE

2015
01:27:33,800 --> 01:27:36,800
THE DISCUSSION SLIDES. DID WE

2016
01:27:36,800 --> 01:27:38,720
BRING THESE UP, TO SAVE TIME CAN

2017
01:27:38,720 --> 01:27:38,960
I START?

2018
01:27:38,960 --> 01:27:41,240
>>I'M SITTING HERE
LISTENING TO

2019
01:27:41,240 --> 01:27:43,600
BOTH TALKS, LISA AND I ARE

2020
01:27:43,600 --> 01:27:46,560
OVERWHELMING, NIDCD START WITH

2021
01:27:46,560 --> 01:27:50,200
STRATEGY. AND DO YOU START BY

2022
01:27:50,200 --> 01:27:52,720
PARTICULARLY BECAUSE THERE'S SO

2023
01:27:52,720 --> 01:27:59,080
MANY AREAS, SO MANY DISEASES.S.O

2024
01:27:59,080 --> 01:28:00,560
MANY TYPES OF DATA AND THE VAST

2025
01:28:00,560 --> 01:28:01,920
MAJORITY OF WHAT IS BEING SHOWN

2026
01:28:01,920 --> 01:28:05,480
IS GENETIC DATA. BUT VERY LITTLE

2027
01:28:05,480 --> 01:28:07,480
BEHAVIORAL DATA IS SHOWN. HOW

2028
01:28:07,480 --> 01:28:09,520
DOES THE NIDCD START THEIR

2029
01:28:09,520 --> 01:28:12,760
STRATEGY? DO THEY PICK AN AREA

2030
01:28:12,760 --> 01:28:14,680
AND FOCUS ON DESIGNING WHAT

2031
01:28:14,680 --> 01:28:15,560
DATABASE THAT SHOULD BE AND

2032
01:28:15,560 --> 01:28:18,760
LOOKING AND WHO DECIDES WHAT

2033
01:28:18,760 --> 01:28:21,240
DATA GOES IN OR WHAT THE

2034
01:28:21,240 --> 01:28:22,640
STANDARDS ARE, ALREADY DO YOU DO

2035
01:28:22,640 --> 01:28:24,480
IT BROADER OR DO YOU TRY TO JOIN

2036
01:28:24,480 --> 01:28:27,120
ONE OF THE LARGER -- OBVIOUSLY

2037
01:28:27,120 --> 01:28:29,120
DO IT THAT WAY, AND START WITH

2038
01:28:29,120 --> 01:28:33,920
MORE ECOSYSTEM DATA PROCESS. THE

2039
01:28:33,920 --> 01:28:37,880
QUESTIONS ARE HUGE. SHOCKINGLY

2040
01:28:37,880 --> 01:28:40,080
OVERWHELMING AND DO YOU TAG ON

2041
01:28:40,080 --> 01:28:42,480
TO WHAT IS BEING PUT INTO

2042
01:28:42,480 --> 01:28:44,720
DATABASES, LIKE ALL MY GENETIC

2043
01:28:44,720 --> 01:28:49,200
DATA GOES INTO NCIB IMMEDIATELY.

2044
01:28:49,200 --> 01:28:50,480
IS THERE A IMMEDIATE TO HAVE

2045
01:28:50,480 --> 01:28:52,840
COPY OF THAT AT NIDCD AND IN

2046
01:28:52,840 --> 01:28:54,960
THEIR DATABASES? I DON'T THINK

2047
01:28:54,960 --> 01:28:57,400
SO PERSONALLY. I WONDER WHAT

2048
01:28:57,400 --> 01:28:58,800
OTHER PEOPLE THINK. AND THOUGHT.

2049
01:28:58,800 --> 01:29:02,240
>>THAT'S CERTAINLY THE
QUESTION

2050
01:29:02,240 --> 01:29:03,720
OF WHETHER WE CAN LEVERAGE

2051
01:29:03,720 --> 01:29:08,440
EXISTING DATABASES AND SUPPORT

2052
01:29:08,440 --> 01:29:10,520
EXTRAMURAL SPACE LIKE WE DO

2053
01:29:10,520 --> 01:29:12,200
GRANTS OR WHETHER THERE'S A NEED

2054
01:29:12,200 --> 01:29:15,000
FOR SOMETHING MORE THAN WHAT IS

2055
01:29:15,000 --> 01:29:16,320
AVAILABLE ALREADY.

2056
01:29:16,320 --> 01:29:22,800
>>ANYONE HAVE ANY
THOUGHTS OR

2057
01:29:22,800 --> 01:29:24,640
SUGGESTIONS? OR OVERWHELMING,

2058
01:29:24,640 --> 01:29:26,200
I'M CURIOUS WHAT PEOPLE ARE

2059
01:29:26,200 --> 01:29:27,760
DOING AND RELYING ON OPEN

2060
01:29:27,760 --> 01:29:30,600
SCIENCE FRAMEWORK I HAVE

2061
01:29:30,600 --> 01:29:33,000
BEHAVIORAL DATA AND ALSO OPEN

2062
01:29:33,000 --> 01:29:34,680
SCIENCE PRELIMINARY PIECE YOU

2063
01:29:34,680 --> 01:29:37,240
PUT IN YOUR EXPERIMENTAL PLANS

2064
01:29:37,240 --> 01:29:38,240
AND YOUR QUESTIONS AND PUT YOUR

2065
01:29:38,240 --> 01:29:40,040
DATA I'M CURIOUS OTHER PEOPLE

2066
01:29:40,040 --> 01:29:44,040
ARE DOING TO DATE, ONE WAY OF

2067
01:29:44,040 --> 01:29:45,680
THINKING ABOUT HOW TO BEGIN THIS

2068
01:29:45,680 --> 01:29:48,960
PROCESS.

2069
01:29:48,960 --> 01:29:52,680
>>DR. TUCCI --

2070
01:29:52,680 --> 01:29:53,480
>>YES.

2071
01:29:53,480 --> 01:29:57,880
>>DR. TUCCI, THIS IS LU
WANG, I

2072
01:29:57,880 --> 01:30:00,440
CAN'T FIND THE RAISE HAND

2073
01:30:00,440 --> 01:30:04,520
FUNCTION. MAY I SHARE SOME

2074
01:30:04,520 --> 01:30:04,760
THOUGHT?

2075
01:30:04,760 --> 01:30:09,280
>>YES, PLEASE DO.

2076
01:30:09,280 --> 01:30:13,400
>>THANK YOU. OPEN SCIENCE

2077
01:30:13,400 --> 01:30:17,560
FRAMEWORK IS POTENTIAL PLACE

2078
01:30:17,560 --> 01:30:20,880
THAT COULD BE USED IN MY VIEW. I

2079
01:30:20,880 --> 01:30:24,440
THINK IN TERMS OF THE DATA

2080
01:30:24,440 --> 01:30:26,000
QUALITY AND APPROPRIATE SHARING

2081
01:30:26,000 --> 01:30:31,200
OF IDENTIFIABLE DATA MORE HAS TO

2082
01:30:31,200 --> 01:30:33,560
BE LEARNED IN REVIEWING THE DATA

2083
01:30:33,560 --> 01:30:38,600
MANAGEMENT AND SHARING POLICY

2084
01:30:38,600 --> 01:30:41,840
PLANT OUR GRANTEES HAVE

2085
01:30:41,840 --> 01:30:43,520
SUBMITTED QUESTIONS ABOUT

2086
01:30:43,520 --> 01:30:46,200
EFFECTIVE AND SECURE DATA

2087
01:30:46,200 --> 01:30:49,640
SHARING HAVE BEEN RAISED. WE ARE

2088
01:30:49,640 --> 01:30:51,720
LEARNING FROM GRANTEES IN TERMS

2089
01:30:51,720 --> 01:30:54,080
OF HOW THAT CAN BE USED.  IN

2090
01:30:54,080 --> 01:30:56,120
TERMS OF FACE BASE, WHAT I WOULD

2091
01:30:56,120 --> 01:31:00,680
LIKE TO SHARE IS THAT FACE BASE

2092
01:31:00,680 --> 01:31:05,280
IS -- DOES UPLOAD AND SHARE

2093
01:31:05,280 --> 01:31:10,040
BEHAVIORAL RESEARCH DATA. WE ARE

2094
01:31:10,040 --> 01:31:11,840
NEW IN THIS ARENA BUT IT'S BEEN

2095
01:31:11,840 --> 01:31:16,600
DONE RECENTLY. THERE ARE OVER 40

2096
01:31:16,600 --> 01:31:18,440
DATA TYPES BUT AGNOSTIC DATA

2097
01:31:18,440 --> 01:31:22,600
MODEL ALLOWS A HYBRID DATA

2098
01:31:22,600 --> 01:31:24,880
REPOSITORY SUCH LIKE FACE BASE

2099
01:31:24,880 --> 01:31:26,480
TO FILL IN GAP BETWEEN THE

2100
01:31:26,480 --> 01:31:29,520
GENERALIST AND THE SPECIALIST

2101
01:31:29,520 --> 01:31:30,920
REPOSITORIES TO ACCOMMODATE THE

2102
01:31:30,920 --> 01:31:32,920
NEEDS FOR A VARIETY OF DATA

2103
01:31:32,920 --> 01:31:35,920
TYPES SHARING. THANK YOU.

2104
01:31:35,920 --> 01:31:42,120
>>GREAT. THANK YOU. 

2105
01:31:42,120 --> 01:31:44,680
>>CAN I THROW A FEW
SLIDES

2106
01:31:44,680 --> 01:31:46,240
TOGETHER TO GET A DISCUSSION

2107
01:31:46,240 --> 01:31:48,000
GOING AND WAS SHARING THEM HERE.

2108
01:31:48,000 --> 01:31:58,360
GO TO NEXT SLIDE PLEASE. 

2109
01:31:58,360 --> 01:32:00,760
>>THIS SORT OF GETS TO
OTHER

2110
01:32:00,760 --> 01:32:02,840
THINGS YOU WERE BRINGING UP THE

2111
01:32:02,840 --> 01:32:06,000
CHALLENGES AND HOW TO LEARNING.

2112
01:32:06,000 --> 01:32:08,120
SO THE QUESTION TO ADVISORY

2113
01:32:08,120 --> 01:32:11,320
COUNCIL IS FIRST HOW DO YOU

2114
01:32:11,320 --> 01:32:12,880
SOLICIT INPUT FROM THE COMMUNITY

2115
01:32:12,880 --> 01:32:15,800
ON DATA SHARING AND STANDARDS? 

2116
01:32:15,800 --> 01:32:19,360
THAT IS ONE BIG OPEN QUESTION

2117
01:32:19,360 --> 01:32:22,760
HOW WE ADDRESS THAT IS CONFIDENT

2118
01:32:22,760 --> 01:32:24,080
DELIVERY?

2119
01:32:24,080 --> 01:32:28,120
>>ONE OF THE I THINK
QUESTIONS

2120
01:32:28,120 --> 01:32:30,440
IS DOES NIDCD NEED A WORKING

2121
01:32:30,440 --> 01:32:33,400
GROUP OR DOES IT NEED TO

2122
01:32:33,400 --> 01:32:34,760
ESTABLISH STANDARDS. I THINK ONE

2123
01:32:34,760 --> 01:32:37,600
OF THE OTHER CHALLENGES OR

2124
01:32:37,600 --> 01:32:38,880
QUESTIONS YOU MENTIONED OR AT

2125
01:32:38,880 --> 01:32:40,040
LEAST ON ONE OF YOUR SLIDES

2126
01:32:40,040 --> 01:32:43,040
BECAUSE PREVIOUS, SHOULD THERE

2127
01:32:43,040 --> 01:32:44,520
BE GRANTS TO ESTABLISH STANDARD

2128
01:32:44,520 --> 01:32:46,720
OR WHO ESTABLISHES OR WORKING

2129
01:32:46,720 --> 01:32:48,520
GROUP AND HOW -- WHO IS ON THOSE

2130
01:32:48,520 --> 01:32:50,400
AND HOW DOES THAT ESTABLISHED?

2131
01:32:50,400 --> 01:32:52,400
THERE IS A LOT OF THINGS TO

2132
01:32:52,400 --> 01:32:53,800
CONSIDER FOR EVERY RESOURCE

2133
01:32:53,800 --> 01:32:59,480
STUDY.  EVERY FACTOR.  AND

2134
01:32:59,480 --> 01:33:01,240
MISSION AREAS WHICH TO DO IT SO

2135
01:33:01,240 --> 01:33:02,800
KELLEY KING WILL TALK ABOUT AN

2136
01:33:02,800 --> 01:33:04,040
EFFORT TO DEVELOP DATA STANDARDS

2137
01:33:04,040 --> 01:33:09,000
FOR HEARING RESEARCH. AND I

2138
01:33:09,000 --> 01:33:10,520
THINK A POINT STANDARDS ARE

2139
01:33:10,520 --> 01:33:11,120
ABSOLUTELY NECESSARY, BECAUSE

2140
01:33:11,120 --> 01:33:12,800
WITHOUT THAT, YOU CAN -- YOU

2141
01:33:12,800 --> 01:33:13,600
DON'T HAVE INTEROPERABILITY OF

2142
01:33:13,600 --> 01:33:18,960
DATA. SHARE IS NOT GREAT BENEFIT

2143
01:33:18,960 --> 01:33:21,080
IF EVERYONE IS REPORTING

2144
01:33:21,080 --> 01:33:23,600
DIFFERENT OUTCOME MEASURES. WE

2145
01:33:23,600 --> 01:33:31,880
FEEL STRONGLY ABOUT THAT. JUST

2146
01:33:31,880 --> 01:33:32,720
RECEIVING THROUGH THE QUESTIONS

2147
01:33:32,720 --> 01:33:35,160
WILL BE FOCUSED ON ONE

2148
01:33:35,160 --> 01:33:37,920
MISSIONARY AT FIRST. THEN ROLL

2149
01:33:37,920 --> 01:33:40,240
OUT EFFORTS IN OTHER MISSION

2150
01:33:40,240 --> 01:33:42,880
AREAS AND HOW DO WE START. I

2151
01:33:42,880 --> 01:33:44,520
THINK REGARDING THE DATA

2152
01:33:44,520 --> 01:33:46,320
STANDARDS WE WILL HEAR MORE

2153
01:33:46,320 --> 01:33:47,800
ABOUT THAT EFFORT, I THINK WE

2154
01:33:47,800 --> 01:33:49,440
WILL HAVE -- I KNOW WE ARE

2155
01:33:49,440 --> 01:33:51,560
RUNNING ON TIME, I MEAN OVER

2156
01:33:51,560 --> 01:33:53,160
TIME AND WILL HAVE 15 MINUTES

2157
01:33:53,160 --> 01:33:55,880
NOW FOR DISCUSSION AND THEN HEAR

2158
01:33:55,880 --> 01:33:57,600
FROM KELLEY BEFORE WE MOVE ON

2159
01:33:57,600 --> 01:34:05,280
FROM THIS TOPIC. DO YOU WANT TO

2160
01:34:05,280 --> 01:34:07,240
FRAME ANOTHER QUESTION PAST DATA

2161
01:34:07,240 --> 01:34:08,120
STANDARDS?

2162
01:34:08,120 --> 01:34:10,320
>>YES, QUESTION IS WHERE
DO WE

2163
01:34:10,320 --> 01:34:12,880
START DATA STANDARDS IS ONE AND

2164
01:34:12,880 --> 01:34:14,680
THEN THE NEXT ONE IS

2165
01:34:14,680 --> 01:34:15,720
REPOSITORIES SO THERE ARE TWO

2166
01:34:15,720 --> 01:34:20,720
TRAINS OF THOUGHT. ONE IS

2167
01:34:20,720 --> 01:34:21,440
EVERYBODY STARTING JANUARY

2168
01:34:21,440 --> 01:34:23,960
SUBMITTING THE BMS PLAN SO

2169
01:34:23,960 --> 01:34:25,960
EVERYBODY IDENTIFY WHAT

2170
01:34:25,960 --> 01:34:27,400
REPOSITORIES WILL BE USED TO

2171
01:34:27,400 --> 01:34:28,920
DEPOSIT DATA, CREATE A SURVEY

2172
01:34:28,920 --> 01:34:30,160
FROM THAT AND SEE WHAT WILL THE

2173
01:34:30,160 --> 01:34:32,800
COMMUNITY IS DOING AND

2174
01:34:32,800 --> 01:34:34,440
CORRELATES AROUND THAT OR WE CAN

2175
01:34:34,440 --> 01:34:37,040
BE MORE CO-ACTIVE AND HAVE

2176
01:34:37,040 --> 01:34:38,600
WORKING GROUP GOES AND LOOKS AT

2177
01:34:38,600 --> 01:34:41,120
REPOSITORIES AND IDENTIFIES THE

2178
01:34:41,120 --> 01:34:43,960
FEATURES AND COMES UP WITH

2179
01:34:43,960 --> 01:34:46,720
RECOMMENDATIONS, THAT WILL BE

2180
01:34:46,720 --> 01:34:48,400
AND THAT'S TWO APPROACHES TO IT.

2181
01:34:48,400 --> 01:34:51,320
>>CAN I BE DEVIL'S
ADVOCATE? IF

2182
01:34:51,320 --> 01:34:54,160
E WE ARE REQUIRED TO PUT OUR

2183
01:34:54,160 --> 01:34:56,280
DATA IN DATA REPOSITORIES

2184
01:34:56,280 --> 01:34:57,840
ELSEWHERE, WHICH WE ALL WHERE

2185
01:34:57,840 --> 01:34:59,160
ARE, NO OVERSIGHT TO ENSURE WE

2186
01:34:59,160 --> 01:35:01,720
ARE DOING THAT, SURE WILL THERE

2187
01:35:01,720 --> 01:35:03,040
WILL BE AT SOME POINT, WHY NEED

2188
01:35:03,040 --> 01:35:04,920
A SECOND REPOSITORY OR DATABASE

2189
01:35:04,920 --> 01:35:09,280
OR WHOLE OTHER -- PLEASE. YOU

2190
01:35:09,280 --> 01:35:10,040
CAN TALK.

2191
01:35:10,040 --> 01:35:12,400
>>I'M NOT A DATA
SCIENTIST. L

2192
01:35:12,400 --> 01:35:22,520
SO I WILL SAY THIS AS A COMPLETE

2193
01:35:22,520 --> 01:35:24,040
IGNORANCE PERHAPS I THINK

2194
01:35:24,040 --> 01:35:26,760
THERE'S DIFFERENT REPOSITORIES

2195
01:35:26,760 --> 01:35:29,080
AND PART OF THE -- A LOT OF

2196
01:35:29,080 --> 01:35:32,280
THESE REPOSITORIES IS FORMATTING

2197
01:35:32,280 --> 01:35:36,400
IS A HUGE THING. SO THEY DON'T

2198
01:35:36,400 --> 01:35:38,280
SMOOTHLY SEAMLESSLY TALK TO EACH

2199
01:35:38,280 --> 01:35:40,800
OTHER AND WHAT DATA GO IN

2200
01:35:40,800 --> 01:35:43,320
ESPECIALLY HOW THEY GO IN, IS

2201
01:35:43,320 --> 01:35:47,040
COMPLETELY A VARIABLE THAT

2202
01:35:47,040 --> 01:35:47,840
INVESTIGATORS TO INVESTIGATOR.

2203
01:35:47,840 --> 01:35:52,840
SO I WOULD SAY THAT CENTRALIZING

2204
01:35:52,840 --> 01:35:55,000
THIS EARNING WOULD BE VERY

2205
01:35:55,000 --> 01:36:00,360
BENEFICIAL BECAUSE THE INSTITUTE

2206
01:36:00,360 --> 01:36:02,920
SORT OF HAS EMERGENT KNOWLEDGE

2207
01:36:02,920 --> 01:36:07,120
THAT EACH INDIVIDUAL

2208
01:36:07,120 --> 01:36:09,200
INVESTIGATORS CAN HAVE. SO I

2209
01:36:09,200 --> 01:36:13,640
WOULD FOR ANY KIND OF DATA THAT

2210
01:36:13,640 --> 01:36:15,200
I WAS LOOKING TO DEPOSIT AND

2211
01:36:15,200 --> 01:36:19,920
SHARE WITH PEOPLE, IT WOULD HELP

2212
01:36:19,920 --> 01:36:20,640
IF SOMEBODY HAS DONE THAT PART

2213
01:36:20,640 --> 01:36:24,720
OF THE THINKING THAT IS NOT MY

2214
01:36:24,720 --> 01:36:28,840
FOR DAY I CAN GENERATE TODAY.

2215
01:36:28,840 --> 01:36:30,920
>>REUSABILITY DATA IS
ENABLED

2216
01:36:30,920 --> 01:36:32,480
BY HAVING THE DATA STANDARDS

2217
01:36:32,480 --> 01:36:34,200
THAT MAKE THEM INTEROPERABLE AND

2218
01:36:34,200 --> 01:36:36,200
HAVING THE ABILITY TO LOOK AT

2219
01:36:36,200 --> 01:36:41,160
LARGER DATA SETS AND FROM ONE OR

2220
01:36:41,160 --> 01:36:42,760
TWO STUDIES.

2221
01:36:42,760 --> 01:36:45,560
>>CAN YOU SAY A WORD
ABOUT HIGH

2222
01:36:45,560 --> 01:36:47,120
VALUE DATA SETS HOW YOU DEFINE

2223
01:36:47,120 --> 01:36:48,760
THOSE AND WHAT THE UTILITY MIGHT

2224
01:36:48,760 --> 01:36:53,960
BE FOR PRECISION MEDICINE?

2225
01:36:53,960 --> 01:36:58,320
>>I HAD SOMEBODY --
(INAUDIBLE)

2226
01:36:58,320 --> 01:37:00,640
>>I LOVE THE FLEXIBLE
INITIAL

2227
01:37:00,640 --> 01:37:03,840
APPROACH BCB HAS TAKEN AND THERE

2228
01:37:03,840 --> 01:37:09,080
IS LOT OF WORK BY DCD FUNDED

2229
01:37:09,080 --> 01:37:11,520
PROJECTS FOR CHILD DATA, LIKE

2230
01:37:11,520 --> 01:37:13,400
AUDIO AND VIDEO DATA, A LOT OF

2231
01:37:13,400 --> 01:37:16,760
PEOPLE HAVE WORKED ONE ON ONE

2232
01:37:16,760 --> 01:37:18,200
WITH PEOPLE SO I THINK KEEPING

2233
01:37:18,200 --> 01:37:21,280
-- WE ARE SO DIVERSE IN WHAT WE

2234
01:37:21,280 --> 01:37:23,800
DO KEEPING SOME FLEXIBILITY AND

2235
01:37:23,800 --> 01:37:25,600
THERE IS A LOT OUT THERE PEOPLE

2236
01:37:25,600 --> 01:37:28,440
HAVE BEEN REALLY WORKING IN THIS

2237
01:37:28,440 --> 01:37:29,280
PROBLEM SPACE. JUST PUT THAT OUT

2238
01:37:29,280 --> 01:37:32,640
THERE.

2239
01:37:32,640 --> 01:37:34,720
>>DR. TUCCI'S COMMENT
HIGH

2240
01:37:34,720 --> 01:37:38,520
VALUE DATA SETS. SO SOME

2241
01:37:38,520 --> 01:37:39,600
INSTITUTES HAVE TAKEN APPROACH

2242
01:37:39,600 --> 01:37:41,400
OF CREATING HIGH VALUE DATA SETS

2243
01:37:41,400 --> 01:37:44,920
AND THINK ABOUT IT FOR INSTANCE

2244
01:37:44,920 --> 01:37:45,920
(INAUDIBLE) IS AN EXAMPLE,

2245
01:37:45,920 --> 01:37:49,320
PEOPLE NOT FAMILIAR, IT IS A

2246
01:37:49,320 --> 01:37:51,840
PROJECT WHERE TAKING DIFFERENT

2247
01:37:51,840 --> 01:37:54,800
TISSUES FROM CADAVERS AND THESE

2248
01:37:54,800 --> 01:37:58,800
ARE MORE THAN ACCIDENT SO MOSTLY

2249
01:37:58,800 --> 01:37:59,840
HEALTHY INDIVIDUALS SO THERE IS

2250
01:37:59,840 --> 01:38:03,000
A GENE EXPRESSION DATA SET

2251
01:38:03,000 --> 01:38:04,880
AVAILABLE FOR ANYBODY TO QUERY,

2252
01:38:04,880 --> 01:38:07,720
SO PARTICULAR TISSUE HOW IS GENE

2253
01:38:07,720 --> 01:38:08,840
EXPRESSED IN NORMAL INDIVIDUAL

2254
01:38:08,840 --> 01:38:10,520
YOU CAN (INAUDIBLE) THAT. SO

2255
01:38:10,520 --> 01:38:12,160
HIGH VALUE DATA SET YOU CAN LOOK

2256
01:38:12,160 --> 01:38:14,920
AT HOW MANY PEOPLE IS THE

2257
01:38:14,920 --> 01:38:21,560
WEBSITE TODAY ASTRONOMICAL

2258
01:38:21,560 --> 01:38:25,240
(INAUDIBLE) ALL HIGH VALUE DATA

2259
01:38:25,240 --> 01:38:28,160
SET THAT WAS FUNDED AND THAT

2260
01:38:28,160 --> 01:38:31,400
ALLOWS TRANSFORM GENOMICS FIELD

2261
01:38:31,400 --> 01:38:34,120
SO THE QUESTION IS IS NIDCD

2262
01:38:34,120 --> 01:38:36,560
BENEFIT FROM IDENTIFYING COUPLE

2263
01:38:36,560 --> 01:38:39,520
OF KEY AREAS CREATING THIS HIGH

2264
01:38:39,520 --> 01:38:42,720
VALUE DATA SET PERSPECTIVELY

2265
01:38:42,720 --> 01:38:43,840
WITH CONTROL CONDITIONS WILL

2266
01:38:43,840 --> 01:38:45,840
SERVE AS A MAGNET FOR THE

2267
01:38:45,840 --> 01:38:51,960
COMMUNITY TO COME INTO RESEARCH 

2268
01:38:51,960 --> 01:38:56,600
I THINK THAT'S ONE OF THE IDEAS.

2269
01:38:56,600 --> 01:38:58,640
>>MORE A QUESTION THAN AN

2270
01:38:58,640 --> 01:39:00,040
ANSWER. IN THINKING THROUGH THE

2271
01:39:00,040 --> 01:39:02,680
WHERE SHOULD WE START FIRST.

2272
01:39:02,680 --> 01:39:04,520
FOCUSING ON DATA STANDARDS. ONE

2273
01:39:04,520 --> 01:39:09,120
OF THE REASONS THAT I AM IS IT

2274
01:39:09,120 --> 01:39:10,920
SEEMS LIKE A DIFFICULT PROBLEM

2275
01:39:10,920 --> 01:39:14,240
TO SOLVE IF THERE ARE MANY WAYS

2276
01:39:14,240 --> 01:39:17,160
TO REQUIRE DATA, TAKE VIDEO

2277
01:39:17,160 --> 01:39:19,520
DATA. TAKE MICROPHONES, BILLIONS

2278
01:39:19,520 --> 01:39:23,280
OF SAMPLING RATES. THE DATA

2279
01:39:23,280 --> 01:39:23,920
STANDARDS PROBLEM SEEMS TO ME

2280
01:39:23,920 --> 01:39:26,360
WOULD BE A PROBLEM OF READ OUT.

2281
01:39:26,360 --> 01:39:29,320
I DEPOSIT MY RAW DATA AND YOU

2282
01:39:29,320 --> 01:39:31,680
DEPOSIT YOURS, WE ALL NEED

2283
01:39:31,680 --> 01:39:35,080
DIFFERENT RAW TYPES OF DATA. WE

2284
01:39:35,080 --> 01:39:38,000
NEED A WAY TO READ THAT. INSTEAD

2285
01:39:38,000 --> 01:39:39,640
OF STANDARDIZING DATA WHICH WILL

2286
01:39:39,640 --> 01:39:42,520
NEVER HAPPEN IS YOU WANT PEOPLE

2287
01:39:42,520 --> 01:39:45,400
WHO WORK IN THIS AREA TO WORK ON

2288
01:39:45,400 --> 01:39:47,280
WAYS OF READING MANY, MANY

2289
01:39:47,280 --> 01:39:51,720
DIFFERENT TYPES OF DATA. SIMPLE

2290
01:39:51,720 --> 01:39:53,520
EXAMPLE WOULD BE THERE ARE

2291
01:39:53,520 --> 01:39:55,800
SAMPLING RATES FOR MICROPHONE

2292
01:39:55,800 --> 01:39:57,480
BUT I DON'T WANT TO PLOT THE

2293
01:39:57,480 --> 01:39:59,040
SPECTRUM AND THERE COULD BE

2294
01:39:59,040 --> 01:40:01,280
RELATIVELY STRAIGHT FORWARD

2295
01:40:01,280 --> 01:40:03,400
INTERFACE, I KNOW SAMPLING RATE,

2296
01:40:03,400 --> 01:40:05,920
I WILL BE ABLE TO INTERPOE LATE

2297
01:40:05,920 --> 01:40:07,320
OR WHATEVER AND TURN INTO THE

2298
01:40:07,320 --> 01:40:09,080
SPECTRUM FOR YOU. SIMPLE EXAMPLE

2299
01:40:09,080 --> 01:40:11,200
SO THAT'S HOW I THINK ABOUT THE

2300
01:40:11,200 --> 01:40:14,680
DATA STANDARDS AN READ OUT. I

2301
01:40:14,680 --> 01:40:17,560
THINK WE ARE GOING TO SPEND TOO

2302
01:40:17,560 --> 01:40:20,960
MUCH TIME TRYING TO STANDARDIZE

2303
01:40:20,960 --> 01:40:23,320
DATA IN AN ENVIRONMENT WHERE

2304
01:40:23,320 --> 01:40:25,440
TECHNOLOGY MOVES QUICKLY AND

2305
01:40:25,440 --> 01:40:26,960
THERE WILL CONTINUE TO BE VERY

2306
01:40:26,960 --> 01:40:30,960
MANY DIFFERENT STANDARDS H.

2307
01:40:30,960 --> 01:40:32,960
>>I ASK THAT IS SOMETIMES
YOU

2308
01:40:32,960 --> 01:40:35,000
WANT THAT DIVERSITY IN THE DATA,

2309
01:40:35,000 --> 01:40:37,560
PARTICULARLY WITH MICROPHONES,

2310
01:40:37,560 --> 01:40:40,880
YOU DON'T WANT DEEP LEARNING

2311
01:40:40,880 --> 01:40:42,880
ALGORITHM, PICKING UP ONLY BEING

2312
01:40:42,880 --> 01:40:45,440
ABLE TO HANDLE DATA FROM

2313
01:40:45,440 --> 01:40:46,440
PARTICULAR CHANNEL. YOU WANT

2314
01:40:46,440 --> 01:40:47,880
MANY DIFFERENT CHANNELS SO IT

2315
01:40:47,880 --> 01:40:49,480
DOESN'T TUNE IN ON THE FEATURES

2316
01:40:49,480 --> 01:40:54,560
YOU WANT TO GET AT.  SO YOU WANT

2317
01:40:54,560 --> 01:40:57,720
THAT DIVERSITY AND IN TERMS OF

2318
01:40:57,720 --> 01:41:01,280
SAMPLING RATES YOU CAN ALWAYS

2319
01:41:01,280 --> 01:41:04,680
SAMPLE ENOUGH SAMPLES THOUGH

2320
01:41:04,680 --> 01:41:06,160
PROBABLY BOUND WANT STANDARD

2321
01:41:06,160 --> 01:41:07,720
THAT NO ONE GOES TO LOOK AT NO

2322
01:41:07,720 --> 01:41:10,800
ONE IS LOOKING AT 8,000 SAMPLE

2323
01:41:10,800 --> 01:41:13,000
SPEED ANY MORE. YOU WANT TO MAKE

2324
01:41:13,000 --> 01:41:15,920
SURE IT'S HIGH ENOUGH BUT ALWAYS

2325
01:41:15,920 --> 01:41:17,960
SELL YOURSELF IF YOU NEED IT. TO

2326
01:41:17,960 --> 01:41:20,080
GO A LOWER RATE BUT DIVERSITY IS

2327
01:41:20,080 --> 01:41:21,560
REALLY KEY ESPECIALLY WITH THE

2328
01:41:21,560 --> 01:41:22,800
DEEP LEARNING ALGORITHMS.

2329
01:41:22,800 --> 01:41:25,480
>>ONE THING WHEN THERE'S
TWO

2330
01:41:25,480 --> 01:41:27,440
KINDS OF DATA STANDARDS, ONE IS

2331
01:41:27,440 --> 01:41:28,880
DATA STANDARD AN COLLECTION BUT

2332
01:41:28,880 --> 01:41:30,400
OTHER IS ALSO HOW YOU DESCRIBE

2333
01:41:30,400 --> 01:41:31,880
THE DATA SO THAT MACHINE

2334
01:41:31,880 --> 01:41:35,280
LEARNING ALGORITHMS WITH USE IT

2335
01:41:35,280 --> 01:41:37,080
SO DIVERSITY AND DATA TYPES IS

2336
01:41:37,080 --> 01:41:38,320
ABSOLUTELY IMPORTANT GENOMICS

2337
01:41:38,320 --> 01:41:40,040
HAVE DIFFERENT TYPES OF

2338
01:41:40,040 --> 01:41:40,720
INSTRUMENTS WHICH ARE

2339
01:41:40,720 --> 01:41:41,840
SPECIALIZED FOR DIFFERENT ASPECT

2340
01:41:41,840 --> 01:41:44,680
SO HOW YOU DEFINE THE DATA, THAT

2341
01:41:44,680 --> 01:41:46,360
STANDARD ALSO IS IMPORTANT SO

2342
01:41:46,360 --> 01:41:47,680
KEEP THAT IN MIND AS WE TALK

2343
01:41:47,680 --> 01:41:50,360
ABOUT DATA STANDARDS. 

2344
01:41:50,360 --> 01:41:53,440
>>DR. WANG. YOUR HAND UP?

2345
01:41:53,440 --> 01:41:58,080
>>YES. THANK YOU, DR.
TUCCI. I

2346
01:41:58,080 --> 01:42:01,840
WANTED TO SECOND WHAT ANUP JUST

2347
01:42:01,840 --> 01:42:02,920
SAID, IN TERMS OF

2348
01:42:02,920 --> 01:42:05,480
STANDARDIZATION, WE HAVE TO

2349
01:42:05,480 --> 01:42:08,320
THINK ABOUT EVERY STEP IN THE

2350
01:42:08,320 --> 01:42:11,320
LIFE CYCLE OF DATA, THE WAY DATA

2351
01:42:11,320 --> 01:42:14,160
IS COLLECTED IS VERY CRITICAL.

2352
01:42:14,160 --> 01:42:16,640
AT THE SAME TIME I ALSO

2353
01:42:16,640 --> 01:42:18,400
UNDERSTAND SOME COUNCIL MEMBERS

2354
01:42:18,400 --> 01:42:20,400
POINTS ON EMBRACING DIVERSITY. I

2355
01:42:20,400 --> 01:42:23,840
THINK THAT IS VERY IMPORTANT AS

2356
01:42:23,840 --> 01:42:26,440
TECHNOLOGIES RAPIDLY ADVANCE.

2357
01:42:26,440 --> 01:42:29,280
WHENEVER YOU HAVE A NEW

2358
01:42:29,280 --> 01:42:30,640
TECHNOLOGY PLATFORM YOU KIND OF

2359
01:42:30,640 --> 01:42:33,120
DISRUPT THE FLOW. SO DATA

2360
01:42:33,120 --> 01:42:36,240
ANALYTICS, DATA USE TOOLS IN

2361
01:42:36,240 --> 01:42:38,760
THESE EVENTS, I -- THE WAY WE

2362
01:42:38,760 --> 01:42:41,520
MANAGE OUR DATA SCIENCE PROGRAM

2363
01:42:41,520 --> 01:42:43,080
IS TO PUSH IN BOTH AREAS. THANK

2364
01:42:43,080 --> 01:42:50,200
YOU.

2365
01:42:50,200 --> 01:42:51,680
>>THANK YOU. WE HAVE
MAYBE

2366
01:42:51,680 --> 01:42:54,400
THREE MINUTES. IS THERE ANOTHER

2367
01:42:54,400 --> 01:42:56,720
SLIDE YOU THINK WE SHOULD,

2368
01:42:56,720 --> 01:43:01,520
>>I LOOK AT THE SLIDE ONE
OTHER

2369
01:43:01,520 --> 01:43:03,680
SUMMARY QUESTION TAKE A LOOK AT

2370
01:43:03,680 --> 01:43:05,960
THAT AND SEE HOW TO DO I. THE

2371
01:43:05,960 --> 01:43:10,040
QUESTION IS SHOULD AN NIDCD LEAD

2372
01:43:10,040 --> 01:43:12,360
AND CALL US AROUND NIDCD,

2373
01:43:12,360 --> 01:43:15,240
SPONSORS REPOSITORIES AND

2374
01:43:15,240 --> 01:43:16,240
THERE'S DIVERSITY OF THOUGHT,

2375
01:43:16,240 --> 01:43:17,360
DRIVERS ARE SOMETHING FOR US TO

2376
01:43:17,360 --> 01:43:19,440
CONSIDER AND KEEP IN MIND AS

2377
01:43:19,440 --> 01:43:21,880
WITH GO FORWARD THE OTHER IS

2378
01:43:21,880 --> 01:43:23,000
BUILD A GRANT MECHANISM TO

2379
01:43:23,000 --> 01:43:24,320
ESTABLISH THESE DATA STANDARDS

2380
01:43:24,320 --> 01:43:26,000
FOR DESCRIBING THE DATA. THE

2381
01:43:26,000 --> 01:43:27,880
QUESTION BECOMES DO WE WANT TO

2382
01:43:27,880 --> 01:43:28,920
GIVE GUIDELINES I MENTIONED AT

2383
01:43:28,920 --> 01:43:32,560
THE BEGINNING PEOPLE ARE SOME

2384
01:43:32,560 --> 01:43:34,040
LEVEL WHAT WE CONSIDER GOOD

2385
01:43:34,040 --> 01:43:36,960
QUALITY DATA. SO EACH AREA MIGHT

2386
01:43:36,960 --> 01:43:38,640
HAVE ITS OWN DEFINITION SO WE

2387
01:43:38,640 --> 01:43:40,640
WANT TO HAVE SOME GUIDELINES SO

2388
01:43:40,640 --> 01:43:42,520
PEOPLE CAN FOLLOW IN DEPOSITING

2389
01:43:42,520 --> 01:43:46,840
THE DATA REPOSITORY, SAY MRI

2390
01:43:46,840 --> 01:43:48,160
MIGHT BE DIFFERENT SET OF

2391
01:43:48,160 --> 01:43:49,600
STANDARDS THAN GENOMICS.

2392
01:43:49,600 --> 01:43:52,160
FINALLY, DO WE WANT TO PART WITH

2393
01:43:52,160 --> 01:43:54,760
OTHER ICs IS ANOTHER ANOTHER

2394
01:43:54,760 --> 01:43:55,680
IMPORTANT QUESTION BOTH IN TERMS

2395
01:43:55,680 --> 01:43:58,000
OF LEVERAGING WHAT SOMEBODY

2396
01:43:58,000 --> 01:43:59,240
BUILT AND RELEASING THE COST FOR

2397
01:43:59,240 --> 01:44:04,320
AN IDC.

2398
01:44:04,320 --> 01:44:07,400
>>UNRELATED COMMENT. ONE
OF THE

2399
01:44:07,400 --> 01:44:12,920
GOALS OF NIDCD IS ALSO PROVIDE

2400
01:44:12,920 --> 01:44:16,880
TRAINING MY ROLE RESEARCHER AT

2401
01:44:16,880 --> 01:44:19,120
COLUMBIA, HOW WE TEACH OUR

2402
01:44:19,120 --> 01:44:22,040
STUDENTS ABOUT DATA SCIENCE, SO

2403
01:44:22,040 --> 01:44:23,760
I THINK WE LOOK FOR OPPORTUNITY

2404
01:44:23,760 --> 01:44:26,960
FOR FUNDING TRAINING GRANTS. SO

2405
01:44:26,960 --> 01:44:30,400
THAT ONCE WE GET THIS QUESTION

2406
01:44:30,400 --> 01:44:32,360
ANSWERED ABOUT HOW DATA SHOULD

2407
01:44:32,360 --> 01:44:34,000
LOOK LIKE, WHAT (INAUDIBLE)

2408
01:44:34,000 --> 01:44:35,800
LOOKS LIKE WE HAVE PEOPLE THAT

2409
01:44:35,800 --> 01:44:38,240
USE THEM. SO I WANT TO BRING

2410
01:44:38,240 --> 01:44:39,760
ATTENTION TO THAT ASPECT THOUGH

2411
01:44:39,760 --> 01:44:43,120
IT IS NOT THE FOCUS OF THIS

2412
01:44:43,120 --> 01:44:43,720
PARTICULAR.

2413
01:44:43,720 --> 01:44:44,120
>>GREAT POINT.

2414
01:44:44,120 --> 01:44:46,800
>>THIS MAY BE IN PLACE,
BUT

2415
01:44:46,800 --> 01:44:48,120
LIKE TRYING TO GET ACCESS TO

2416
01:44:48,120 --> 01:44:49,120
MEDICAL DATA AND I HAVE TO

2417
01:44:49,120 --> 01:44:52,200
BECOME A VISITING SCHOLAR TO GET

2418
01:44:52,200 --> 01:44:54,200
ACCESS TO THE DATA. I THINK THAT

2419
01:44:54,200 --> 01:44:57,520
THE IRB SHOULD BE WRITTEN WE

2420
01:44:57,520 --> 01:45:00,040
SHOULD REQUIRE IRB TO BE WRITTEN

2421
01:45:00,040 --> 01:45:01,280
IN WAY YOU DON'T HAVE TO GO

2422
01:45:01,280 --> 01:45:02,320
THROUGH THOSE CHANNELS,

2423
01:45:02,320 --> 01:45:06,200
SPECIFIED THAT YOU ARE ABLE TO

2424
01:45:06,200 --> 01:45:09,840
SHARE THIS OTHER CERTAIN PEOPLE

2425
01:45:09,840 --> 01:45:10,240
THEMSELVES.

2426
01:45:10,240 --> 01:45:12,240
>>I THINK THERE'S PRIVACY

2427
01:45:12,240 --> 01:45:13,560
CONCERNS AND HOW THEY EVOLVE

2428
01:45:13,560 --> 01:45:16,120
OVER TIME WITH ONGOING LIVING

2429
01:45:16,120 --> 01:45:19,320
DATABASES, REALLY A HUGE ISSUE. 

2430
01:45:19,320 --> 01:45:23,320
>>SUSAN, DO YOU HAVE ANY
FINAL

2431
01:45:23,320 --> 01:45:26,200
THINGS YOU WANT TO BRING UP?

2432
01:45:26,200 --> 01:45:28,320
>>NO. I THINK OTHER THAN

2433
01:45:28,320 --> 01:45:33,160
(INAUDIBLE) HUGE ISSUE I THINK

2434
01:45:33,160 --> 01:45:33,360
NIDCD --

2435
01:45:33,360 --> 01:45:38,040
>>SORRY. NIDCD NEEDS TO
I'M

2436
01:45:38,040 --> 01:45:40,920
SURE WE ARE HAPPY TO ADVISE AND

2437
01:45:40,920 --> 01:45:43,920
POTENTIALLY START A TASK FORCE

2438
01:45:43,920 --> 01:45:45,600
WHAT ISSUES THERE ARE AND WHAT

2439
01:45:45,600 --> 01:45:46,840
ACTUALLY NEEDS TO BE DONE. LOOK

2440
01:45:46,840 --> 01:45:50,880
FORWARD TO THAT. THE NIDCD I

2441
01:45:50,880 --> 01:45:51,920
TEND TO THINK THAT FOLLOWING THE

2442
01:45:51,920 --> 01:45:54,280
LEAD OF THE OTHER INSTITUTES AND

2443
01:45:54,280 --> 01:45:55,600
ESTABLISHING A TASK FORCE TO

2444
01:45:55,600 --> 01:45:57,800
ESTABLISH WHAT NEEDS TO BE DONE

2445
01:45:57,800 --> 01:46:02,080
IS PROBABLY A GOOD DIRECTION.

2446
01:46:02,080 --> 01:46:06,600
>>ALL RIGHT. THANK YOU SO
MU M.

2447
01:46:06,600 --> 01:46:09,840
THANK YOU LU, FOR YOUR REALLY

2448
01:46:09,840 --> 01:46:11,480
ENLIGHTENING HELPFUL COMMENTS

2449
01:46:11,480 --> 01:46:16,320
ABOUT YOUR DIRECTIONS AT NIDCR.

2450
01:46:16,320 --> 01:46:16,840
ALL RIGHT.

2451
01:46:16,840 --> 01:46:18,560
>>I AM REALLY PLEASED TO

2452
01:46:18,560 --> 01:46:21,640
INTRODUCE DR. KELLEY KING NIDCD

2453
01:46:21,640 --> 01:46:22,920
PROGRAM OFFICER TO TELL YOU

2454
01:46:22,920 --> 01:46:25,040
ABOUT OUR NEW PARTNERSHIP WITH

2455
01:46:25,040 --> 01:46:26,480
THE NATIONAL ACADEMIES OF

2456
01:46:26,480 --> 01:46:28,520
SCIENCES ENGINEERING AND

2457
01:46:28,520 --> 01:46:30,840
MEDICINE, TO DEVELOP STANDARD

2458
01:46:30,840 --> 01:46:32,400
OUTCOMES MEASURES THAT BETTER

2459
01:46:32,400 --> 01:46:34,840
RELATED IN MEANINGFUL WAYS TO

2460
01:46:34,840 --> 01:46:37,080
THE INDIVIDUALS PERCEPTION A

2461
01:46:37,080 --> 01:46:40,400
FUNCTION ABILITY OF THE IMPACT,

2462
01:46:40,400 --> 01:46:42,040
HEARING DIFFICULTY. WELCOME,

2463
01:46:42,040 --> 01:46:43,200
KELLEY. 

2464
01:46:43,200 --> 01:46:44,280
>>GREAT. THANK YOU. CAN
YOU

2465
01:46:44,280 --> 01:46:45,200
HEAR ME OKAY?

2466
01:46:45,200 --> 01:46:46,560
>>YES.

2467
01:46:46,560 --> 01:46:49,400
>>MY AUDIOLOGY BACKGROUND

2468
01:46:49,400 --> 01:46:51,040
IMPROVING THE SIGNAL TO NOISE

2469
01:46:51,040 --> 01:46:52,840
RATIO. THANK YOU DR. TUCCI, GOOD

2470
01:46:52,840 --> 01:46:54,280
AFTERNOON, EVERYBODY. I THINK

2471
01:46:54,280 --> 01:46:56,040
WHILE THE SLIDES ARE SLEDDING I

2472
01:46:56,040 --> 01:46:59,600
WILL SAY THAT HOPEFULLY THIS

2473
01:46:59,600 --> 01:47:01,080
CONVERSATION DOES YIELD NICELY

2474
01:47:01,080 --> 01:47:02,360
WHAT WE TALKED ABOUT. I'M

2475
01:47:02,360 --> 01:47:04,080
PLEASED TO SHARE THIS EXCITING

2476
01:47:04,080 --> 01:47:07,720
NEW INITIATIVE WITH YOU THAT

2477
01:47:07,720 --> 01:47:09,480
NIDCD AND SEVERAL OTHER FEDERAL

2478
01:47:09,480 --> 01:47:10,560
PARTNERS I WILL TELL YOU ABOUT

2479
01:47:10,560 --> 01:47:13,120
HAVE LAUNCHED WITH NATIONAL

2480
01:47:13,120 --> 01:47:14,480
ACADEMIES, THE TOPICS BEING

2481
01:47:14,480 --> 01:47:16,360
MEANINGFUL OUTCOME MEASURES IN

2482
01:47:16,360 --> 01:47:18,200
ADULT HEARING HEALTHCARE. SOME

2483
01:47:18,200 --> 01:47:20,480
OF YOU MAY RECALL THAT NUMBER OF

2484
01:47:20,480 --> 01:47:22,160
YEARS AGO WE HAD ANOTHER

2485
01:47:22,160 --> 01:47:23,640
PARTNERSHIP WITH THE NATIONAL

2486
01:47:23,640 --> 01:47:26,080
ACADEMIES IN ADDITION TO OTHER

2487
01:47:26,080 --> 01:47:27,840
AGENCIES REPRESENTED HERE TODAY

2488
01:47:27,840 --> 01:47:30,680
ORGANIZATIONS THAT WAS HIGHLY

2489
01:47:30,680 --> 01:47:32,040
SUCCESSFUL, CONSENSUS STUDY DONE

2490
01:47:32,040 --> 01:47:34,680
ON ADULT HEARING HEALTHCARE AND

2491
01:47:34,680 --> 01:47:36,840
ISSUES OF ACCESS AND

2492
01:47:36,840 --> 01:47:38,800
AFFORDABILITY. WE USE THAT AS A

2493
01:47:38,800 --> 01:47:40,280
BLUEPRINT HOW TO CARRY THIS WORK

2494
01:47:40,280 --> 01:47:41,520
FORWARD THAT I WILL TELL YOU

2495
01:47:41,520 --> 01:47:46,160
ABOUT TODAY.  BY WAY OF

2496
01:47:46,160 --> 01:47:47,760
BACKGROUND IT MAY COME AS NO

2497
01:47:47,760 --> 01:47:48,960
SURPRISE ADULT HEARING

2498
01:47:48,960 --> 01:47:51,160
HEALTHCARE WE LACK STANDARD

2499
01:47:51,160 --> 01:47:53,040
OUTCOME MEASURES, RELATED IN

2500
01:47:53,040 --> 01:47:55,240
MEANINGFUL WAYS TO HOW AN

2501
01:47:55,240 --> 01:47:57,480
INDIVIDUAL PROCEEDS THEIR

2502
01:47:57,480 --> 01:47:59,120
FUNCTIONAL ABILITIES AND IMPACTS

2503
01:47:59,120 --> 01:48:02,920
THE FUNCTIONAL HEARING

2504
01:48:02,920 --> 01:48:03,680
DIFFICULTIES HAVE ON THEIR

2505
01:48:03,680 --> 01:48:05,480
QUALITY OF LIFE. SO THE AUDIO

2506
01:48:05,480 --> 01:48:07,040
GRAM WHICH IS THE GOLD STANDARD

2507
01:48:07,040 --> 01:48:08,680
HOW WE MEASURE HEARING,

2508
01:48:08,680 --> 01:48:11,520
EVALUATES RESPONSES TO SIMPLE

2509
01:48:11,520 --> 01:48:13,920
TONES AND QUIET ACROSS THE SET

2510
01:48:13,920 --> 01:48:16,280
OF DISCRETE FREQUENCIES.  IT IS

2511
01:48:16,280 --> 01:48:18,800
NOT A GREAT CROSS PROXY FOR

2512
01:48:18,800 --> 01:48:19,680
SELF-REPORT AND HOW SOMEONE

2513
01:48:19,680 --> 01:48:21,360
FEELS THEY ARE HEARING. IT ALSO

2514
01:48:21,360 --> 01:48:22,680
GENERATES A LOT OF DATA BUT

2515
01:48:22,680 --> 01:48:24,000
THERE IS NOT GOOD CONSENSUS

2516
01:48:24,000 --> 01:48:27,000
WHICH OF THOSE DATA POINTS ARE

2517
01:48:27,000 --> 01:48:27,800
APPROPRIATE END POINTS FOR

2518
01:48:27,800 --> 01:48:29,880
EXAMPLE WHEN IT COMES TO

2519
01:48:29,880 --> 01:48:31,360
DETERMINING EFFICACY AROUND

2520
01:48:31,360 --> 01:48:35,280
THERAPEUTIC INTERVENTION.

2521
01:48:35,280 --> 01:48:36,400
MOREOVER, YOU CAN HAVE

2522
01:48:36,400 --> 01:48:37,080
STATISTICALLY SIGNIFICANT CHANGE

2523
01:48:37,080 --> 01:48:38,640
ON THE AUDIO GRAM AND INDIVIDUAL

2524
01:48:38,640 --> 01:48:41,080
MAY NOT PERCEIVE IT. AND WHETHER

2525
01:48:41,080 --> 01:48:42,720
OR NOT THEY PERCEIVE IT MAY HAVE

2526
01:48:42,720 --> 01:48:43,880
NO BEARING WHETHER THEY FEEL

2527
01:48:43,880 --> 01:48:45,520
LIKE THEY ARE IMPROVED OR

2528
01:48:45,520 --> 01:48:47,280
SATISFIED WITH THE INTERVENTION 

2529
01:48:47,280 --> 01:48:48,920
WE HAVE OTHER VALID WAYS TO

2530
01:48:48,920 --> 01:48:50,560
MEASURE HEARING THAT MAY BE

2531
01:48:50,560 --> 01:48:52,680
MEANINGFUL TO CLINICIANS, WHO

2532
01:48:52,680 --> 01:48:59,280
CAN LOOK AT CHANGES IN ADR OR

2533
01:48:59,280 --> 01:49:00,840
OTC CONDITION BUT A LOT OF THEM

2534
01:49:00,840 --> 01:49:02,640
DON'T DO A GOOD JOB OF MAPPING

2535
01:49:02,640 --> 01:49:04,720
ON INDIVIDUAL'S EXPERIENCE. SO

2536
01:49:04,720 --> 01:49:06,440
OUTCOME MEASURES MEANINGFUL TO

2537
01:49:06,440 --> 01:49:07,120
INDIVIDUAL AND CLINICIAN, THAT

2538
01:49:07,120 --> 01:49:08,840
CAN BE STANDARDLY APPLIED IN

2539
01:49:08,840 --> 01:49:10,560
ADULT HEARING HEALTHCARE ARE

2540
01:49:10,560 --> 01:49:12,040
NEEDED TO HELP US FIGURE OUT

2541
01:49:12,040 --> 01:49:13,120
WHICH OF THESE INTERVENTIONS

2542
01:49:13,120 --> 01:49:14,360
ACTUALLY IMPROVE THE LIVES OF

2543
01:49:14,360 --> 01:49:17,160
PEOPLE WITH HEARING LOSS. WHILE

2544
01:49:17,160 --> 01:49:18,720
WE DETERMINE QUANTITATIVE AND

2545
01:49:18,720 --> 01:49:20,840
QUALITATIVE ASPECT OF THAT

2546
01:49:20,840 --> 01:49:22,560
IMPROVEMENT. THIS APPROACH HAS

2547
01:49:22,560 --> 01:49:24,840
BROAD REACH, EVERYWHERE FROM THE

2548
01:49:24,840 --> 01:49:26,000
INDIVIDUAL WITH HEARING LOSS

2549
01:49:26,000 --> 01:49:28,560
THROUGH THE RESEARCHERS WHO ARE

2550
01:49:28,560 --> 01:49:30,200
GENERATING THE EVIDENCE THAT

2551
01:49:30,200 --> 01:49:34,080
DRIVE POLICY AND REGULATION. SO

2552
01:49:34,080 --> 01:49:35,440
THERE HAD IS AN IMPORTANT

2553
01:49:35,440 --> 01:49:37,000
QUESTION, NOT EXHAUSTIVE LIST IT

2554
01:49:37,000 --> 01:49:39,800
SORT OF FRAMES IT, EVERYTHING

2555
01:49:39,800 --> 01:49:42,880
OKAY? THAT SORT OF FRAMES THIS

2556
01:49:42,880 --> 01:49:44,520
TOPIC, SO FOR EXAMPLE, WHAT ARE

2557
01:49:44,520 --> 01:49:46,440
THE CHALLENGES IN DEVELOPING

2558
01:49:46,440 --> 01:49:48,200
OUTCOME MEASURES OR METRICS LIKE

2559
01:49:48,200 --> 01:49:50,080
THIS? THIS IS NOT THE FIRST TIME

2560
01:49:50,080 --> 01:49:51,720
CONVERSATION HAS BEEN HAD SO WHY

2561
01:49:51,720 --> 01:49:53,520
DON'T WE HAVE IT YET? LOOKING AT

2562
01:49:53,520 --> 01:49:56,080
THE BARRIERS ARE OR CHALLENGES

2563
01:49:56,080 --> 01:49:57,640
IS IMPORTANT BUT EVEN MORE

2564
01:49:57,640 --> 01:49:59,200
IMPORTANT PERHAPS IS ASKING

2565
01:49:59,200 --> 01:50:00,520
OURSELF WHAT IS ARE THE GAMES TO

2566
01:50:00,520 --> 01:50:02,680
BE -- GAINS TO BE MADE. WHAT

2567
01:50:02,680 --> 01:50:05,120
MIGHT WE BENEFIT OR HOW MIGHT WE

2568
01:50:05,120 --> 01:50:08,120
ALL BENEFIT FROM POOR EXAMPLE

2569
01:50:08,120 --> 01:50:11,240
LARGE UPTAKE AND ADOPTION WITH

2570
01:50:11,240 --> 01:50:12,840
EYE TOWARD STANDARDIZED OR

2571
01:50:12,840 --> 01:50:14,040
UNIVERSAL APPLICATION LIKE WE

2572
01:50:14,040 --> 01:50:17,120
TALKED ABOUT ABOUT.  SHOULD THEE

2573
01:50:17,120 --> 01:50:18,280
METRICS AN OUTCOMES DIFFERENCE

2574
01:50:18,280 --> 01:50:19,600
FROM TYPE OF APPLICATION OR

2575
01:50:19,600 --> 01:50:21,480
INTERVENTION? FOR EXAMPLE, WE

2576
01:50:21,480 --> 01:50:23,320
CAN ENVISION INTERVENTIONS

2577
01:50:23,320 --> 01:50:24,600
GEARED TOWARD PERMANENT HEARING

2578
01:50:24,600 --> 01:50:26,680
LOSS, BEING DIFFERENT THAN

2579
01:50:26,680 --> 01:50:27,520
INTERVENTIONS GEARED TOWARD

2580
01:50:27,520 --> 01:50:29,720
HEARING LOSS IN THE ACUTE PHASE,

2581
01:50:29,720 --> 01:50:30,840
TARGET POPULATIONS ARE

2582
01:50:30,840 --> 01:50:32,400
DIFFERENT, THE TIME FRAME IS

2583
01:50:32,400 --> 01:50:33,720
DIFFERENT. THE ISSUES AROUND

2584
01:50:33,720 --> 01:50:36,400
REGULATION AND SAFETY ARE LIKELY

2585
01:50:36,400 --> 01:50:37,640
DIFFERENT. SHOULD THEY DIFFER

2586
01:50:37,640 --> 01:50:39,720
ACCORDING TO USE BY VARIOUS

2587
01:50:39,720 --> 01:50:41,600
INVESTED PARTIES? WILL THE END

2588
01:50:41,600 --> 01:50:42,640
POINTS THAT MEAN SOMETHING TO

2589
01:50:42,640 --> 01:50:44,440
RESEARCHERS AND THE REGULATORS

2590
01:50:44,440 --> 01:50:46,520
NECESSARILY BE DIFFERENT THAN

2591
01:50:46,520 --> 01:50:48,240
THOSE THAT MATTER LARGER GENERAL

2592
01:50:48,240 --> 01:50:50,480
PUBLIC. WE NEED TO THINK ABOUT

2593
01:50:50,480 --> 01:50:52,680
WHAT SUCCESS LOOKS LIKE. SO NOT

2594
01:50:52,680 --> 01:50:54,680
JUST AN IDEALIZED VERSION OF

2595
01:50:54,680 --> 01:50:56,520
SUCCESS BUT WHAT A COMPETITIVE

2596
01:50:56,520 --> 01:50:58,880
LEVEL OF SUCCESS MIGHT BE OR

2597
01:50:58,880 --> 01:51:01,000
EVEN A MARGINAL LEVEL ACHIEVABLE

2598
01:51:01,000 --> 01:51:02,960
SUCCESS AND HOW THAT COMPARES TO

2599
01:51:02,960 --> 01:51:04,880
THE CURRENT STATUS QUO. I THINK

2600
01:51:04,880 --> 01:51:07,360
WHEN WE EMBARK ON ACTIVITY LIKE

2601
01:51:07,360 --> 01:51:09,320
THIS, WE NEED TO BE CAREFUL NOT

2602
01:51:09,320 --> 01:51:13,720
TO MAKE PERFECT THE ENEMY OF THE

2603
01:51:13,720 --> 01:51:16,160
GOOD. WE NEED TO MOVE THE

2604
01:51:16,160 --> 01:51:18,640
NEEDLE. IF IT FEELS LIKE THERE'S

2605
01:51:18,640 --> 01:51:20,200
URGENCY IN WHAT I'M SAYING I

2606
01:51:20,200 --> 01:51:21,440
BELIEVE IT IS. WE HAVE A GROWING

2607
01:51:21,440 --> 01:51:22,840
LIST OF INTERVENTIONS THAT ARE

2608
01:51:22,840 --> 01:51:27,040
TARGETING HEARING LOSS. THEY ARE

2609
01:51:27,040 --> 01:51:27,920
INTERVENTIONS THAT ARE

2610
01:51:27,920 --> 01:51:29,400
LEVERAGING TECHNOLOGY AND

2611
01:51:29,400 --> 01:51:31,160
HARDWARE, THAT WAS GROWING BUT

2612
01:51:31,160 --> 01:51:32,240
ALSO PHARMACEUTICAL

2613
01:51:32,240 --> 01:51:35,000
INTERVENTIONS BIOLOGICS, GENE

2614
01:51:35,000 --> 01:51:36,920
THERAPY, THEY ARE COMING OR THEY

2615
01:51:36,920 --> 01:51:39,920
ARE HERE. IF WE DON'T USE THIS

2616
01:51:39,920 --> 01:51:41,960
WORK WE WON'T ESTABLISH WHICH

2617
01:51:41,960 --> 01:51:45,920
MAKE IMPACT ON INDIVIDUAL LIVES 

2618
01:51:45,920 --> 01:51:52,280
SO THIS IS A BOND COMPLEX THORNY

2619
01:51:52,280 --> 01:51:55,200
URGENT ISSUE. WE FELT BRINGING

2620
01:51:55,200 --> 01:51:56,960
TO THE NATIONAL ACADEMIES WAS

2621
01:51:56,960 --> 01:51:57,960
EXACTLY THE RIGHT SPACE FOR

2622
01:51:57,960 --> 01:52:03,680
WHERE TO PUT THIS WORK. THOSE

2623
01:52:03,680 --> 01:52:04,800
NOT FAMILIAR NATIONAL ACADEMIES

2624
01:52:04,800 --> 01:52:06,400
OF SCIENCE ENGINEERING AND

2625
01:52:06,400 --> 01:52:08,520
MEDICINE ARE NON-PROFIT

2626
01:52:08,520 --> 01:52:10,120
INSTITUTIONS THAT PROVIDE EXPERT

2627
01:52:10,120 --> 01:52:12,440
ADVICE ON SOME OF THE MOST

2628
01:52:12,440 --> 01:52:13,280
PRESSING CHALLENGES FACING THE

2629
01:52:13,280 --> 01:52:18,120
NATION AND THE WORLD. CHARTERED

2630
01:52:18,120 --> 01:52:20,800
BY ABRAHAM LINCOLN IN 1863, THE

2631
01:52:20,800 --> 01:52:22,440
CHARTER NOT ONLY ENABLES

2632
01:52:22,440 --> 01:52:24,640
NATIONAL ACADEMIES TO ENGAGE

2633
01:52:24,640 --> 01:52:25,840
WITH CONGRESS AND FEDERAL

2634
01:52:25,840 --> 01:52:27,480
AGENCIES, IT ENCOURAGES THEM TO

2635
01:52:27,480 --> 01:52:33,280
DO SO. THE ACADEMY SHALL WHEN

2636
01:52:33,280 --> 01:52:36,040
CALLED UPON BY DEPARTMENT OF

2637
01:52:36,040 --> 01:52:37,200
GOVERNMENT INVESTIGATE EXAMINE

2638
01:52:37,200 --> 01:52:41,400
EXPERIMENT AND REPORT UPON ANY

2639
01:52:41,400 --> 01:52:42,520
SUBJECTS OF SCIENCE OR ART,

2640
01:52:42,520 --> 01:52:44,560
NOTICING NOW THESE ARE THE DRAFT

2641
01:52:44,560 --> 01:52:45,640
SLIDES. WE ARE GOING TO WORK

2642
01:52:45,640 --> 01:52:48,360
WITH IT AND IT WILL BE FINE BUT

2643
01:52:48,360 --> 01:52:49,200
U.S. SOMEWHERE GOING TO POINT

2644
01:52:49,200 --> 01:52:51,640
THAT OUT THIS IS THE DRAFT

2645
01:52:51,640 --> 01:52:54,200
VERSION. SO MISSION NATIONAL

2646
01:52:54,200 --> 01:52:55,720
ACADEMY POSTED UP HERE, I WILL

2647
01:52:55,720 --> 01:52:58,120
ADD TO IT THEY OPERATE UNDER A

2648
01:52:58,120 --> 01:53:01,240
CORE SET OF VALUES THAT INCLUDE

2649
01:53:01,240 --> 01:53:03,040
INDEPENDENT INTEGRITY

2650
01:53:03,040 --> 01:53:06,120
INCLUSIVITY, TRUST, RIGOR AND

2651
01:53:06,120 --> 01:53:07,920
OBJECTIVITY. SO WE CAN SEE WE

2652
01:53:07,920 --> 01:53:09,000
FELT LIKE IT WAS IMPORTANT

2653
01:53:09,000 --> 01:53:10,200
BRINGING THIS WORK TO PARTNER

2654
01:53:10,200 --> 01:53:15,920
WITH THEM. THE,NA MILLION

2655
01:53:15,920 --> 01:53:19,640
ACADEMIES HAS A TRIED AND TRUE

2656
01:53:19,640 --> 01:53:22,400
AND VERY WELL UNDERSTOOD UNIQUE

2657
01:53:22,400 --> 01:53:23,800
STUDY PROCESS THEY APPLIED IN A

2658
01:53:23,800 --> 01:53:26,240
NUMBER OF WAYS THAT OUTLINE HERE

2659
01:53:26,240 --> 01:53:28,400
IN THE SCHEMATIC SO THE VERY

2660
01:53:28,400 --> 01:53:30,040
FIRST PERHAPS MOST IMPORTANT

2661
01:53:30,040 --> 01:53:32,720
STEP IS THAT THE STUDY IS THE

2662
01:53:32,720 --> 01:53:33,960
SCIENCE BECAUSE ALL THE WORK

2663
01:53:33,960 --> 01:53:35,640
FLOWS THROUGH HERE AND WE WILL

2664
01:53:35,640 --> 01:53:36,680
TALK ABOUT WHAT ABOUT THAT

2665
01:53:36,680 --> 01:53:37,800
SPECIFIC STATEMENT IS IN A

2666
01:53:37,800 --> 01:53:40,000
MINUTE. THE NEXT PROCESS

2667
01:53:40,000 --> 01:53:41,120
INVOLVES SELECTION OF COMMITTEE

2668
01:53:41,120 --> 01:53:43,560
OF EXPERTS WHO WILL DO THIS WORK

2669
01:53:43,560 --> 01:53:45,720
AND WE ARE IN THAT PROCESS RIGHT

2670
01:53:45,720 --> 01:53:48,120
NOW. THERE IS AN OPEN CALL FOR

2671
01:53:48,120 --> 01:53:49,480
NOMINATION WITH THIS COMMITTEE

2672
01:53:49,480 --> 01:53:50,560
AND I WILL HIGHLIGHT THAT MORE

2673
01:53:50,560 --> 01:53:53,360
IN A MINUTE. ONCE THE COMMITTEE

2674
01:53:53,360 --> 01:53:56,120
IS FORMED THEY UNDERTAKE THEIR

2675
01:53:56,120 --> 01:53:58,560
WORK THEY OPERATE UNDER A SERIES

2676
01:53:58,560 --> 01:53:59,880
OF GOVERNING PROVISION, NOT ALL

2677
01:53:59,880 --> 01:54:01,520
OF WHICH I HAVE LISTED HERE AND

2678
01:54:01,520 --> 01:54:02,560
SOME OF WHICH I WANTED TO

2679
01:54:02,560 --> 01:54:05,760
HIGHLIGHT. FIRST AND FOREMOST

2680
01:54:05,760 --> 01:54:07,080
THAT THIS COMMITTEE WORK IS

2681
01:54:07,080 --> 01:54:08,880
COMPLETELY INDEPENDENT. THERE IS

2682
01:54:08,880 --> 01:54:12,960
NO NOODLING FROM FEDERAL AGENCY

2683
01:54:12,960 --> 01:54:14,760
OR THAT TAKES PLACE WORK IS

2684
01:54:14,760 --> 01:54:17,960
THEIR WORK.  THEY EMPHASIZE

2685
01:54:17,960 --> 01:54:18,920
TRANSPARENCY AND COMMUNICATION

2686
01:54:18,920 --> 01:54:21,120
WITH THE PUBLIC. SO INFORMATION

2687
01:54:21,120 --> 01:54:23,440
ABOUT THE STUDY PROCESS, THE

2688
01:54:23,440 --> 01:54:24,440
COMMITTEE MEMBERS, THE

2689
01:54:24,440 --> 01:54:25,880
ACTIVITIES OF THE COMMITTEE, ARE

2690
01:54:25,880 --> 01:54:27,440
ALL MADE PUBLIC AND THE FINAL

2691
01:54:27,440 --> 01:54:28,680
REPORT IS MADE AVAILABLE TO THE

2692
01:54:28,680 --> 01:54:34,520
PUBLIC. I APOLOGIZE FOR THESE

2693
01:54:34,520 --> 01:54:36,200
NEXT FEW SLIDES, THERE'S WAY TOO

2694
01:54:36,200 --> 01:54:37,640
MANY WORDS AND PROMISE I WON'T

2695
01:54:37,640 --> 01:54:40,080
READ THEM ALL.  THIS IS THE

2696
01:54:40,080 --> 01:54:41,080
OFFICIAL STATEMENT. AVAILABLE ON

2697
01:54:41,080 --> 01:54:43,000
THE WEBSITE I WILL POINT YOU

2698
01:54:43,000 --> 01:54:44,480
TOWARDS. I WANT TO HIGHLIGHT THE

2699
01:54:44,480 --> 01:54:46,200
MAIN POINTS.  THIS IS THE WORK

2700
01:54:46,200 --> 01:54:47,920
THE COMMITTEE THAT FORMS WILL BE

2701
01:54:47,920 --> 01:54:49,400
ASKED TO DO. THEY WILL EXAMINE

2702
01:54:49,400 --> 01:54:51,520
THE STATE OF THE SCIENCE AND

2703
01:54:51,520 --> 01:54:52,720
OUTCOMES RESEARCH FOR

2704
01:54:52,720 --> 01:54:54,120
INTERVENTIONS IN ADULT HEARING

2705
01:54:54,120 --> 01:54:55,760
HEALTHCARE. WE HAVE EXCLUDED

2706
01:54:55,760 --> 01:54:59,320
SURGICALLY PLACED PROSTHETIC

2707
01:54:59,320 --> 01:55:00,720
DEVICES BECAUSE RECENT YEARS

2708
01:55:00,720 --> 01:55:02,040
THERE'S BEEN SIMILAR WORK THAT'S

2709
01:55:02,040 --> 01:55:04,120
BEEN ONGOING IN COW CLEAR

2710
01:55:04,120 --> 01:55:06,360
IMPLANTS AND WE DID NOT --

2711
01:55:06,360 --> 01:55:07,600
COCHLEAR IMPLANTS AND DIDN'T

2712
01:55:07,600 --> 01:55:09,960
WANT THE WORK TO BE DUPLICATIVE.

2713
01:55:09,960 --> 01:55:12,640
THERE'S EMPHASIS ON MEASURES

2714
01:55:12,640 --> 01:55:13,640
MEANINGFUL TO INDIVIDUAL AND

2715
01:55:13,640 --> 01:55:15,000
CLINICIAN.  SPECIFICALLY THE

2716
01:55:15,000 --> 01:55:15,880
COMMITTEE IS CHARGED WITH

2717
01:55:15,880 --> 01:55:17,760
IDENTIFYING AND ENGAGING

2718
01:55:17,760 --> 01:55:19,080
APPROPRIATE STAKEHOLDERS

2719
01:55:19,080 --> 01:55:21,200
INCLUDING THOSE RELEVANT FEDERAL

2720
01:55:21,200 --> 01:55:22,400
AGENCIES, THE ACT EPIDEMICKIC

2721
01:55:22,400 --> 01:55:24,720
AND PROFESSIONAL COMMUNITIES,

2722
01:55:24,720 --> 01:55:26,520
INDUSTRY, PATIENT AND CONSUMER

2723
01:55:26,520 --> 01:55:28,840
GROUPS, TO HEAR FROM THEM AND

2724
01:55:28,840 --> 01:55:30,920
GAIN THEIR PERSPECTIVE AS INPUT

2725
01:55:30,920 --> 01:55:32,680
TO THE COMMITTEE DELIBERATIONS

2726
01:55:32,680 --> 01:55:34,760
THAT TAKE PLACE.  THEY WILL

2727
01:55:34,760 --> 01:55:37,080
PROVIDE A CONTEXTUAL BACKGROUND

2728
01:55:37,080 --> 01:55:39,800
DESCRIBING HOW HEARING

2729
01:55:39,800 --> 01:55:40,880
CONTRIBUTES TO OVERALL HEALTH

2730
01:55:40,880 --> 01:55:42,320
AND WELL BEING AND DESCRIBE

2731
01:55:42,320 --> 01:55:44,040
VARIOUS CLASSES OF INTERVENTIONS

2732
01:55:44,040 --> 01:55:45,320
FOR HEARING LOSS.  THEY WILL

2733
01:55:45,320 --> 01:55:47,000
LOOK AT DESCRIBING THE OUTCOME

2734
01:55:47,000 --> 01:55:48,440
MEASURES THAT ARE CURRENTLY

2735
01:55:48,440 --> 01:55:49,440
AVAILABLE TO ASSESS HEARING

2736
01:55:49,440 --> 01:55:52,480
FUNCTION IN ADULTS.  WHAT DO WE

2737
01:55:52,480 --> 01:55:54,000
CURRENTLY HAVE? IMPORTANTLY,

2738
01:55:54,000 --> 01:55:57,360
THEY WILL LOOK AT DOMAINS BEYOND

2739
01:55:57,360 --> 01:55:58,120
COMMUNICATION THAT SHOULD BE

2740
01:55:58,120 --> 01:55:58,800
CONSIDERED IN THINKING ABOUT

2741
01:55:58,800 --> 01:56:02,520
THIS. SO FOR EXAMPLE, SOCIAL

2742
01:56:02,520 --> 01:56:03,560
CONNECTIVITY, ACTIVITY

2743
01:56:03,560 --> 01:56:04,760
LIMITATION, ECONOMIC

2744
01:56:04,760 --> 01:56:06,840
PRODUCTIVITY. THEY ALSO WILL

2745
01:56:06,840 --> 01:56:09,760
HELP IDENTIFY GAPS FOR

2746
01:56:09,760 --> 01:56:10,680
DEVELOPMENT OF NEW OUTCOME

2747
01:56:10,680 --> 01:56:11,800
MEASURES ARE URGENTLY NEEDED. 

2748
01:56:11,800 --> 01:56:13,360
THIS IS THE WORK THAT COULD

2749
01:56:13,360 --> 01:56:15,360
DRIVE FUTURE RESEARCH AND

2750
01:56:15,360 --> 01:56:18,040
INNOVATION IN THE SHORT TERM. 

2751
01:56:18,040 --> 01:56:19,840
THEY WILL IDENTIFY WHICH

2752
01:56:19,840 --> 01:56:21,120
SETTINGS THE METRICS ARE

2753
01:56:21,120 --> 01:56:23,040
APPLICABLE. SO AGAIN THE IDEA OF

2754
01:56:23,040 --> 01:56:25,400
THE OUTCOMES THAT APPLY TO

2755
01:56:25,400 --> 01:56:26,760
EFFICACY IN A CLINICAL TRIAL,

2756
01:56:26,760 --> 01:56:29,480
THE SAME AS ASSESSING

2757
01:56:29,480 --> 01:56:30,720
IMPROVEMENT AND SATISFACTION AT

2758
01:56:30,720 --> 01:56:31,400
THE INDIVIDUAL LEVEL IN THE

2759
01:56:31,400 --> 01:56:36,400
CLINIC. THEY WILL PROVIDE

2760
01:56:36,400 --> 01:56:37,720
RECOMMENDATIONS ON THE

2761
01:56:37,720 --> 01:56:38,960
STANDARDIZED USE OF EXISTING

2762
01:56:38,960 --> 01:56:42,520
OUTCOME MEASURES. SO THEY WILL

2763
01:56:42,520 --> 01:56:44,400
RECOMMEND A CORE SET OF MEASURES

2764
01:56:44,400 --> 01:56:47,080
USED NOW, AND THEN ALSO WHAT THE

2765
01:56:47,080 --> 01:56:48,520
NECESSARY QUALITIES AND

2766
01:56:48,520 --> 01:56:51,520
FRAMEWORK FOR ADOPTION OF NEW

2767
01:56:51,520 --> 01:56:53,840
MEANINGFUL MEASURES COULD BE AND

2768
01:56:53,840 --> 01:56:55,160
HOW THEY CAN BE IMPLEMENTED IN

2769
01:56:55,160 --> 01:56:57,280
LONG TERM AND SHORT TERM. ALL

2770
01:56:57,280 --> 01:56:59,240
THIS IS IN THE CONTEXT OF HAVING

2771
01:56:59,240 --> 01:57:01,680
AND I TOWARD LARGE SCALE

2772
01:57:01,680 --> 01:57:03,080
ADOPTION AND STANDARDIZATION,

2773
01:57:03,080 --> 01:57:05,160
IDEA OF NATIONAL DATABASE USE

2774
01:57:05,160 --> 01:57:09,000
AND REPOSITORY. SO I WANT TO

2775
01:57:09,000 --> 01:57:10,240
UNDERSCORE THE COMMITTEE IS

2776
01:57:10,240 --> 01:57:12,360
GIVEN DIRECTIVE IN THE ABSENCE

2777
01:57:12,360 --> 01:57:14,040
IN CASES WHERE ROBUST EVIDENCE

2778
01:57:14,040 --> 01:57:15,720
IS LACKING OR ABSENT, THE

2779
01:57:15,720 --> 01:57:18,800
COMMITTEE IS ENCOURAGED TO MAKE

2780
01:57:18,800 --> 01:57:19,880
RECOMMENDATIONS BASED ON SOUND

2781
01:57:19,880 --> 01:57:21,000
SCIENTIFIC REASONING AND THE

2782
01:57:21,000 --> 01:57:23,760
CONTEXT OF THE CURRENT

2783
01:57:23,760 --> 01:57:25,600
HEALTHCARE ENVIRONMENT. THIS IS

2784
01:57:25,600 --> 01:57:27,040
IMPORTANT BECAUSE THEY MAY VERY

2785
01:57:27,040 --> 01:57:28,880
EASILY RUN INTO DEAD ENDS OR

2786
01:57:28,880 --> 01:57:31,240
AREAS WHERE COMPELLING EVIDENCE

2787
01:57:31,240 --> 01:57:32,040
DOES MANGE THIS AND WE DON'T

2788
01:57:32,040 --> 01:57:34,880
WANT THAT TO BE A BARRIER TO

2789
01:57:34,880 --> 01:57:37,880
VAMPING IT FORWA FORWARD. PERFET

2790
01:57:37,880 --> 01:57:39,240
EXAMPLE WHERE LANGUAGE LIKE THIS

2791
01:57:39,240 --> 01:57:41,680
IS IMPACTFUL, THE LAST CONSENSUS

2792
01:57:41,680 --> 01:57:42,920
STUDY THE COMMITTEE WOUND UP

2793
01:57:42,920 --> 01:57:44,480
MAKING THE RELATION TO CREATE A

2794
01:57:44,480 --> 01:57:46,680
NEW CATEGORY OF OVER THE COUNTER

2795
01:57:46,680 --> 01:57:48,000
HEARING AIDS THERE WAS NOT

2796
01:57:48,000 --> 01:57:49,200
COMPELLING EVIDENCE AT THE TIME

2797
01:57:49,200 --> 01:57:51,000
TO BACK THAT UP BUT IT WAS SOUND

2798
01:57:51,000 --> 01:57:55,400
SCIENTIFIC REASONING. THE

2799
01:57:55,400 --> 01:57:57,440
PROJECT TIME LINE IS CAPTURED

2800
01:57:57,440 --> 01:58:00,080
HERE, THIS WILL -- MAJORITY OF

2801
01:58:00,080 --> 01:58:01,440
WORK WILL BE DONE OVER THE NEXT

2802
01:58:01,440 --> 01:58:04,080
18 MONTHS, FINAL REPORT

2803
01:58:04,080 --> 01:58:06,720
PUBLISHED WITHIN TWO YEARS. WE

2804
01:58:06,720 --> 01:58:08,080
HAVE ALREADY DEFINED THE STUDY

2805
01:58:08,080 --> 01:58:10,720
SO WE ARE AT THE POINT OF

2806
01:58:10,720 --> 01:58:12,720
NATIONAL ACADEMIES I SHOULD BE

2807
01:58:12,720 --> 01:58:14,720
CLEAR IS AT THE POINT OF

2808
01:58:14,720 --> 01:58:16,200
COMMITTEE FORMATION. WE EXECUTED

2809
01:58:16,200 --> 01:58:19,560
THIS CONTRACT IN LATE JULY 2023.

2810
01:58:19,560 --> 01:58:21,360
THAT MEANS ONCE THE COMMITTEE IS

2811
01:58:21,360 --> 01:58:23,000
FORMED THIS FALL THEY WILL BEGIN

2812
01:58:23,000 --> 01:58:25,760
MEETING ALMOST IMMEDIATELY AND

2813
01:58:25,760 --> 01:58:26,840
THEIR DELIBERATIONS AND

2814
01:58:26,840 --> 01:58:29,520
INFORMATION GATHERING WILL TAKE

2815
01:58:29,520 --> 01:58:30,560
PLACE PREPARATION IN THE REPORT,

2816
01:58:30,560 --> 01:58:32,120
WHAT IT WILLK LOU LIKE WILL ALSO

2817
01:58:32,120 --> 01:58:33,560
TAKE PLACE FROM THE BEGINNING

2818
01:58:33,560 --> 01:58:37,080
AND THE STUDY SHOULD BE

2819
01:58:37,080 --> 01:58:41,720
PUBLISHED IN EARLY SPRING 2025. 

2820
01:58:41,720 --> 01:58:44,080
A PROJECT WEBSITE IS ACTIVE AND

2821
01:58:44,080 --> 01:58:46,120
LIVE NATIONAL ACADEMY HOME, YOU

2822
01:58:46,120 --> 01:58:48,160
CAN GO THERE SO THE NEXT HANDFUL

2823
01:58:48,160 --> 01:58:50,000
OF DAYS YOU CAN GO THERE AND

2824
01:58:50,000 --> 01:58:52,080
NOMINATE EXPERTS EXCEPTIONAL IN

2825
01:58:52,080 --> 01:58:54,440
THIS SPACE. SO SEPTEMBER 21ST IN

2826
01:58:54,440 --> 01:58:55,680
FACT YOU CAN NOMINATE EXPERTS

2827
01:58:55,680 --> 01:58:58,840
YOU THINK SHOULD SERVE ON THIS

2828
01:58:58,840 --> 01:58:59,680
COMMITTEE APPROXIMATELY 14

2829
01:58:59,680 --> 01:59:01,360
PEOPLE WILL MAKE UP THE

2830
01:59:01,360 --> 01:59:04,400
COMMITTEE AND THEY ARE LOOKING

2831
01:59:04,400 --> 01:59:07,400
FOR THOUGHT I HAD IT BUT ONLY

2832
01:59:07,400 --> 01:59:17,920
GOING BACKWARDS. A LOT OF ME AND

2833
01:59:20,440 --> 01:59:23,720
NO SLIDES. SO I WILL STEP AWAY. 

2834
01:59:23,720 --> 01:59:26,120
I THINK I CAN DO THIS OFF

2835
01:59:26,120 --> 01:59:28,600
SCRIPT. SO THE THEY ARE LOOKING

2836
01:59:28,600 --> 01:59:30,040
FOR APPROXIMATELY 14 MEMBERS

2837
01:59:30,040 --> 01:59:32,000
THAT OPEN CALL FOR NOMINATIONS

2838
01:59:32,000 --> 01:59:34,480
CURRENTLY EXIST. I ENCOURAGE US

2839
01:59:34,480 --> 01:59:37,200
TO THINK DEEPLY ABOUT NOMINATING

2840
01:59:37,200 --> 01:59:38,200
YOURSELF OR SOMEONE IN YOUR

2841
01:59:38,200 --> 01:59:39,240
ORBIT THAT YOU THINK IS

2842
01:59:39,240 --> 01:59:40,800
EXCEPTIONALAL. THEY ARE LOOKING

2843
01:59:40,800 --> 01:59:42,040
FOR EXPERTISE IN HEARING AND

2844
01:59:42,040 --> 01:59:44,080
HEAR LOSS. BUT WE NEED TO THINK

2845
01:59:44,080 --> 01:59:45,560
BEYOND OUR FIELD TO REALLY

2846
01:59:45,560 --> 01:59:48,880
ADVANCE THIS. SO FOLKS WHO HAVE

2847
01:59:48,880 --> 01:59:50,000
EXPERTISE IN PATIENT REPORTED

2848
01:59:50,000 --> 01:59:51,480
OUTCOME MEASURES MAYBE SOME

2849
01:59:51,480 --> 01:59:55,320
OTHER FIELDS WHO ARE EXPERTS IN

2850
01:59:55,320 --> 01:59:56,920
METRICS, WE NEED TO BE THINKING

2851
01:59:56,920 --> 02:00:01,120
BROADLY ABOUT THAT. SO PLEASE

2852
02:00:01,120 --> 02:00:06,400
CAST THE NET WIDELY TO STAY ON

2853
02:00:06,400 --> 02:00:08,600
THE PROJECT WEB SOOT OR BOOK

2854
02:00:08,600 --> 02:00:10,080
MARKET AND CHECK BACK IN Z THE

2855
02:00:10,080 --> 02:00:11,760
PROJECT MOVES FORWARD.  IT WILL

2856
02:00:11,760 --> 02:00:14,320
BE POSTED THERE. NIDCD IS JOINED

2857
02:00:14,320 --> 02:00:15,640
IN SPONSORSHIP WITH THESE

2858
02:00:15,640 --> 02:00:18,080
ACTIVITIES.  THANK YOU. BY OUR

2859
02:00:18,080 --> 02:00:19,680
PARTNERS AT THE NATIONAL

2860
02:00:19,680 --> 02:00:21,680
INSTITUTE ON AGING, THE CENTERS

2861
02:00:21,680 --> 02:00:22,600
FOR DISEASE CONTROL AND

2862
02:00:22,600 --> 02:00:24,120
PREVENTION, THE DEPARTMENT OF

2863
02:00:24,120 --> 02:00:25,320
DEFENSE, AND THE DEPARTMENT OF

2864
02:00:25,320 --> 02:00:27,560
VETERAN AFFAIRS, I'M GRATEFUL TO

2865
02:00:27,560 --> 02:00:29,920
THE FOLKS LISTED ON THIS SLIDE

2866
02:00:29,920 --> 02:00:31,600
FOR NOT ONLY RECOGNIZING THE

2867
02:00:31,600 --> 02:00:33,960
IMPORTANCE OF THIS WORK AND

2868
02:00:33,960 --> 02:00:35,400
URGENCY AROUND IT BUT JUMPING

2869
02:00:35,400 --> 02:00:36,640
THROUGH MANY HOOPS TO TWO

2870
02:00:36,640 --> 02:00:38,560
THROUGH FEDERAL SPONSORSHIP OF

2871
02:00:38,560 --> 02:00:48,120
ACTIVITY LIKE THIS. IT IS NOT --

2872
02:00:48,120 --> 02:00:51,240
BUT I ALSO WANT TO THANK TALKING

2873
02:00:51,240 --> 02:00:52,400
ABOUT SOMETHING THROUGH HOOP A

2874
02:00:52,400 --> 02:00:57,880
NUMBER OF MY COLLEAGUES AT NIDCD

2875
02:00:57,880 --> 02:01:00,000
WHO WORKED REALLY HARD TO MAKE

2876
02:01:00,000 --> 02:01:02,680
THIS HAPPEN FOR REASONS BEYOND

2877
02:01:02,680 --> 02:01:04,600
THE SCOPE OF THIS PAUSE I WILL

2878
02:01:04,600 --> 02:01:06,200
SAY VERY SMALL WINDOW WHICH WE

2879
02:01:06,200 --> 02:01:08,160
CAN EXECUTE THIS CONTRACT, WE

2880
02:01:08,160 --> 02:01:09,640
HAD TO GET IT RIGHT IMMEDIATELY

2881
02:01:09,640 --> 02:01:11,440
AND A LOT OF FOLKS CAME TOGETHER

2882
02:01:11,440 --> 02:01:12,680
TO MAKE THAT HAPPEN AND WE DID

2883
02:01:12,680 --> 02:01:15,760
IT. SO I'M GRATEFUL FOR THAT. IF

2884
02:01:15,760 --> 02:01:18,000
YOU SAW A SLIDE, QR CODE ANT

2885
02:01:18,000 --> 02:01:20,000
WEBSITE, I WILL MAKE THE SLIDES

2886
02:01:20,000 --> 02:01:20,640
AVAILABLE AND THANK YOU FOR YOUR

2887
02:01:20,640 --> 02:01:26,840
TIME.

2888
02:01:26,840 --> 02:01:27,280
[APPLAUSE]

2889
02:01:27,280 --> 02:01:29,240
>>THANK YOU VERY MUCH,
KELLEY

2890
02:01:29,240 --> 02:01:31,280
FOR ALL YOUR EFFORTS AND THIS

2891
02:01:31,280 --> 02:01:32,600
GREAT PRESENTATION. REALLY

2892
02:01:32,600 --> 02:01:33,800
EXCITED ABOUT THIS. WE THOUGHT

2893
02:01:33,800 --> 02:01:37,960
THIS IS THE START OF MANY

2894
02:01:37,960 --> 02:01:39,320
SUBJECTIVITIES BUT THIS IS A

2895
02:01:39,320 --> 02:01:40,760
HEAVY LIFT. VERY MUCH APPRECIATE

2896
02:01:40,760 --> 02:01:43,120
YOUR WORK. ANY COMMENTS OR

2897
02:01:43,120 --> 02:01:49,200
DISCUSSION. 

2898
02:01:49,200 --> 02:01:53,080
>>SO THIS IS REALLY
EXCITING I

2899
02:01:53,080 --> 02:01:55,040
CAN'T WAIT TO HEAR WHAT THEY

2900
02:01:55,040 --> 02:01:58,600
COME UP WITH. IT GOT ME THINKING

2901
02:01:58,600 --> 02:02:01,440
ABOUT CHILDREN. AND WHAT

2902
02:02:01,440 --> 02:02:03,520
PARALLEL RECOMMENDATIONS MIGHT

2903
02:02:03,520 --> 02:02:06,080
BE GENERATED, PERHAPS THAT COULD

2904
02:02:06,080 --> 02:02:09,080
BE THE FOLLOW UP.

2905
02:02:09,080 --> 02:02:11,680
>>I DON'T DISAGREE. ONE
OF THE

2906
02:02:11,680 --> 02:02:13,800
EXCITING THINGS ABOUT THIS WORK

2907
02:02:13,800 --> 02:02:15,360
IS IF IT IS SUCCESSFUL DEPENDING

2908
02:02:15,360 --> 02:02:17,040
HOW IT IS SUCCESSFUL IT COULD BE

2909
02:02:17,040 --> 02:02:21,000
A MODEL NOT JUST FOR OUR OTHER

2910
02:02:21,000 --> 02:02:22,600
MISSION AREAS BUT MEDIA TRICK

2911
02:02:22,600 --> 02:02:27,880
AND OTHER APPLICATIONS.

2912
02:02:27,880 --> 02:02:29,440
>>THIS POINT THERE IS A
LOT TO

2913
02:02:29,440 --> 02:02:29,640
DO.

2914
02:02:29,640 --> 02:02:31,040
>>I WANT TO SAY I'M
EXCITED

2915
02:02:31,040 --> 02:02:32,240
ABOUT THIS WORK AND

2916
02:02:32,240 --> 02:02:33,680
CONGRATULATIONS THAT YOU PUSHED

2917
02:02:33,680 --> 02:02:34,600
THIS THROUGH. IT IS REALLY

2918
02:02:34,600 --> 02:02:37,080
NEEDED AND I LOOK FORWARD TO ITS

2919
02:02:37,080 --> 02:02:41,320
OUTCOME. 

2920
02:02:41,320 --> 02:02:43,040
>>ALL RIGHT. THANK YOU,
VERY

2921
02:02:43,040 --> 02:02:46,560
MUCH KELLEY. I THINK WE WILL

2922
02:02:46,560 --> 02:03:00,840
TAKE A BREAK AND COME BACK AT

2923
02:03:00,840 --> 02:03:05,680
>>UNIVERSAL TEST. SO
WELCOME

2924
02:03:05,680 --> 02:03:06,280
DR. PARMA

2925
02:03:06,280 --> 02:03:10,320
>>. THANK YOU DR. TUCCI,
I'M

2926
02:03:10,320 --> 02:03:11,840
VERY HAPPY TO BE HERE. IS THE

2927
02:03:11,840 --> 02:03:22,360
SOUND OKAY? LOUDER.  GIVE ME ONE

2928
02:03:23,240 --> 02:03:32,440
SECOND. UH-HUH. I WILL SHARE

2929
02:03:32,440 --> 02:03:38,480
AGAIN. WE SHOULD BE READY TO GO.

2930
02:03:38,480 --> 02:03:45,600
AUDIO GOOD? TODAY WE ARE GOING

2931
02:03:45,600 --> 02:03:47,280
TO START FROM THE END OF THE

2932
02:03:47,280 --> 02:03:48,960
TALK AND WE ARE GOING TO START

2933
02:03:48,960 --> 02:03:51,520
FROM TAKE HOME MESSAGES. SO

2934
02:03:51,520 --> 02:03:52,880
FIRST OF ALL WHAT I WANT TO

2935
02:03:52,880 --> 02:03:55,880
POINT OUT IS THAT COVID-19 HAS

2936
02:03:55,880 --> 02:03:59,200
EXPOSED THE GAPS IN OUR

2937
02:03:59,200 --> 02:04:00,000
PREPAREDNESS FOR MEDICAL CARE

2938
02:04:00,000 --> 02:04:04,720
AND I WILL USE THE CABLE

2939
02:04:04,720 --> 02:04:07,200
FRACTION TO EXEMPLIFY THAT IN A

2940
02:04:07,200 --> 02:04:09,080
COUPLE OF WAYS. SECOND WE ARE

2941
02:04:09,080 --> 02:04:10,920
NOW -- WE HAVE THE BALANCE

2942
02:04:10,920 --> 02:04:12,600
INNOVATION RECENTLY THERE WOULD

2943
02:04:12,600 --> 02:04:15,760
ALLOW TO IMPLEMENT POPULATION

2944
02:04:15,760 --> 02:04:17,200
SCREENING MALFUNCTION, TODAY IS

2945
02:04:17,200 --> 02:04:19,400
NOT REALLY AVAILABLE AND I WILL

2946
02:04:19,400 --> 02:04:21,720
TRY TO EXPLAIN IT LIST MY

2947
02:04:21,720 --> 02:04:22,720
OPINION WHAT ARE THE REASON WHY

2948
02:04:22,720 --> 02:04:26,160
THIS IS NOT THE CASE. THIRD, WHY

2949
02:04:26,160 --> 02:04:28,600
SHOULD WE CARE ABOUT HAVING

2950
02:04:28,600 --> 02:04:32,880
ROUTINE SMELL TEST OR VERSAL

2951
02:04:32,880 --> 02:04:34,440
SMELL TESTING. POPULATION

2952
02:04:34,440 --> 02:04:35,800
SCREENING FOR CELL FUNCTION? I

2953
02:04:35,800 --> 02:04:37,600
BELIEVE WITH THE DATA THAT I

2954
02:04:37,600 --> 02:04:40,040
WILL PRESENT TODAY WE HAVE SOLID

2955
02:04:40,040 --> 02:04:41,680
IDEA OF THE KIND OF BREAK

2956
02:04:41,680 --> 02:04:43,680
THROUGH THAT WE CAN HAVE IN

2957
02:04:43,680 --> 02:04:46,680
SEVERAL AREAS OF HEALTHCARE

2958
02:04:46,680 --> 02:04:48,120
INCLUDING NUTRITION MENTAL

2959
02:04:48,120 --> 02:04:50,320
HEALTH AND BRAIN HEALTH, IF WE

2960
02:04:50,320 --> 02:04:54,360
WERE TO TRACK CONSISTENTLY SMALL

2961
02:04:54,360 --> 02:04:55,520
FUNCTION THROUGHOUT THE --

2962
02:04:55,520 --> 02:04:57,680
ACROSS DEVELOPMENT. NOW LET ME

2963
02:04:57,680 --> 02:04:59,040
TAKE YOU BACK. THESE ARE THE

2964
02:04:59,040 --> 02:05:00,360
THREE POINTS THAT I WANT TO MAKE

2965
02:05:00,360 --> 02:05:02,560
BUT IT ALL STARTS WITH COVID-19.

2966
02:05:02,560 --> 02:05:07,560
SO I WANT TO TAKE YOU BACK FOR

2967
02:05:07,560 --> 02:05:08,400
ACCEPTANCE FEBRUARY AND MARCH OF

2968
02:05:08,400 --> 02:05:11,800
2020. MAYBE NOT GREAT MEMORIES

2969
02:05:11,800 --> 02:05:15,960
BUT IT WAS FOR THE SENSORY

2970
02:05:15,960 --> 02:05:17,440
COMMUNITY A TIME OF UNITY AN

2971
02:05:17,440 --> 02:05:20,760
TIME OF HARD WORK. SO MANY OF US

2972
02:05:20,760 --> 02:05:25,880
WORKING IN SMALL TEAMS WE START

2973
02:05:25,880 --> 02:05:27,040
RECEIVING E EMAILS FROM PEOPLE

2974
02:05:27,040 --> 02:05:28,640
OR LOOK AT TWITTER AND SAID A

2975
02:05:28,640 --> 02:05:31,280
LOT OF PATIENTS WERE ASKING I

2976
02:05:31,280 --> 02:05:33,360
LOST MY SMELL AN TASTE, I HAVE

2977
02:05:33,360 --> 02:05:35,080
COVID TELL US MORE PLEASE.  WE

2978
02:05:35,080 --> 02:05:36,560
ARE AT OOH LOSS. WE TALK TO THE

2979
02:05:36,560 --> 02:05:37,880
DOCTORS, THEY ARE NOT ABLE TO

2980
02:05:37,880 --> 02:05:40,200
GIVE US ANSWERS. THIS THEN

2981
02:05:40,200 --> 02:05:44,280
BECAME ALL THE MOVEMENT SO WE

2982
02:05:44,280 --> 02:05:46,280
STARTED LOOKING AT DATA RESULTS

2983
02:05:46,280 --> 02:05:48,000
AND STARTED TALKING AT EACH

2984
02:05:48,000 --> 02:05:50,560
OTHER AND I THINK THE FIRST SET

2985
02:05:50,560 --> 02:05:51,600
OF DATA THAT WAS CONVINCING

2986
02:05:51,600 --> 02:05:53,280
ABOUT THE FACT THAT WE NEEDED TO

2987
02:05:53,280 --> 02:05:58,400
PAY ATTENTION TO LOSS OF SMELL

2988
02:05:58,400 --> 02:06:00,680
AND TASTE TASTE, THE DATA COMING

2989
02:06:00,680 --> 02:06:01,720
FROM REPORTS WHERE MILLIONS OF

2990
02:06:01,720 --> 02:06:04,360
PEOPLE IN THE UK AND LATER ON IN

2991
02:06:04,360 --> 02:06:07,240
THE U.S., WERE ABLE TO

2992
02:06:07,240 --> 02:06:08,440
(INAUDIBLE) ON A DAILY BASIS THE

2993
02:06:08,440 --> 02:06:09,800
SERIES OF SYMPTOMS THAT ARE THE

2994
02:06:09,800 --> 02:06:12,560
ONES THAT NEED TO BE ON THE Y

2995
02:06:12,560 --> 02:06:14,200
AXIS OF THESE GRAPHS. SO THERE

2996
02:06:14,200 --> 02:06:18,440
WERE SYMPTOMS LIKE FA TEAL AND

2997
02:06:18,440 --> 02:06:20,040
PERSISTENT COUGH, FEVER, LOSS OF

2998
02:06:20,040 --> 02:06:22,320
SMELL IN PARTICULAR WAS

2999
02:06:22,320 --> 02:06:24,760
ESSENTIALLY THAT WAS THE BEST

3000
02:06:24,760 --> 02:06:31,920
PREDICTOR OF HAVING COVID COVIDT

3001
02:06:31,920 --> 02:06:36,040
IS NOT NEW LAST BUT AT --

3002
02:06:36,040 --> 02:06:38,720
PREGNANT PRE-DICK TORR OF

3003
02:06:38,720 --> 02:06:40,200
COVID-19, ONE OF THE INDICATORS

3004
02:06:40,200 --> 02:06:41,920
OR THE SYMPTOMS THAT THE CDC

3005
02:06:41,920 --> 02:06:43,360
USED TO DEFINE COVID-19.  THIS

3006
02:06:43,360 --> 02:06:47,280
WAS THE SYMPTOM ADDED APRIL 27

3007
02:06:47,280 --> 02:06:49,240
OF 2020. LATER ON THE PANDEMIC

3008
02:06:49,240 --> 02:06:52,040
WE STARTED HAVING SELF-REPORTED

3009
02:06:52,040 --> 02:06:53,240
DATA THROUGH SOME OBJECTIVE

3010
02:06:53,240 --> 02:06:56,160
EVIDENCE AND BY OBJECTIVE I MEAN

3011
02:06:56,160 --> 02:06:57,360
COLLECTIVE THROUGH PHYSICAL

3012
02:06:57,360 --> 02:06:59,800
METHODS INDICATING THAT YEAH,

3013
02:06:59,800 --> 02:07:02,320
THERE WAS A CAUSAL RELATIONSHIP

3014
02:07:02,320 --> 02:07:04,680
BETWEEN INFECTION OF SARS COV-2

3015
02:07:04,680 --> 02:07:06,520
AND LOSS OF SMELL. THIS IS THE

3016
02:07:06,520 --> 02:07:09,280
BEST STUDY THAT I CAN PULL UP.

3017
02:07:09,280 --> 02:07:11,200
SO HERE WE HAVE 36 PEOPLE THAT

3018
02:07:11,200 --> 02:07:12,760
DIDN'T WANT TO GET VACCINATED

3019
02:07:12,760 --> 02:07:15,680
AND DECIDED TO GO TO A HOSPITAL

3020
02:07:15,680 --> 02:07:18,200
AND BE INOCULATED WITH SARS

3021
02:07:18,200 --> 02:07:20,640
COV-2 VIRUS. ONE OF THE EARLIEST

3022
02:07:20,640 --> 02:07:22,640
VARIANTS AVAILABLE AND THEN THEY

3023
02:07:22,640 --> 02:07:24,600
WERE FOLLOWED FOR THEIR SYMPTOMS

3024
02:07:24,600 --> 02:07:26,600
FOR 28 DAYS.  AS YOU CAN SEE

3025
02:07:26,600 --> 02:07:32,600
FROM THIS GRAPH, AND PURPLE LINE

3026
02:07:32,600 --> 02:07:34,800
IN PARTICULAR, THAT IS ABSENT

3027
02:07:34,800 --> 02:07:36,680
CHANGE OR CHANGE IN SMELL SCORE.

3028
02:07:36,680 --> 02:07:38,760
THE HIGHER THE CHANGE, THE

3029
02:07:38,760 --> 02:07:40,400
HIGHER THE DIFFERENCE IN SMELL

3030
02:07:40,400 --> 02:07:41,520
SCORES SO AS YOU CAN SEE FROM

3031
02:07:41,520 --> 02:07:45,080
THE VERY BEGINNING, WE HAVE A

3032
02:07:45,080 --> 02:07:46,760
VERY LOSS OF SMELL THREE DAYS TO

3033
02:07:46,760 --> 02:07:48,120
OTHER SYMPTOMS THAT ARE

3034
02:07:48,120 --> 02:07:50,120
INDICATED WITH THE RED LINE AND

3035
02:07:50,120 --> 02:07:52,760
THEN YOU HAVE MORE OR LESS A

3036
02:07:52,760 --> 02:07:54,520
PERIOD OF TWO WEEKS PEOPLE ARE

3037
02:07:54,520 --> 02:07:55,920
MOVING THEIR SENSE OF SMELL AND

3038
02:07:55,920 --> 02:07:58,200
THEN SLOWLY REGAINING IT. THIS

3039
02:07:58,200 --> 02:07:59,560
IS BASICALLY THE TREND THAT WE

3040
02:07:59,560 --> 02:08:02,440
HAVE SEEN IN THE MAJORITY OF

3041
02:08:02,440 --> 02:08:05,000
PATIENTS. APPROXIMATELY 85% OF

3042
02:08:05,000 --> 02:08:06,680
PATIENTS AFTER THE DELTA VARIANT

3043
02:08:06,680 --> 02:08:09,480
LOSES THEIR SENSE OF -- LOSS

3044
02:08:09,480 --> 02:08:11,280
THEIR SENSE OF SMELL. BUT

3045
02:08:11,280 --> 02:08:14,920
COVERED WITHIN TWO WEEKS. OTHERS

3046
02:08:14,920 --> 02:08:17,440
TEND TO MAINTAIN A PERSISTENT

3047
02:08:17,440 --> 02:08:19,560
SMELL LOSS FOR UP TO TWO YEARS

3048
02:08:19,560 --> 02:08:21,160
AND EVEN THREE YEARS NOW. FOR

3049
02:08:21,160 --> 02:08:23,160
SOME PEOPLE THIS HAS NOT GONE

3050
02:08:23,160 --> 02:08:27,080
BACK TO THEIR BASELINE. WHY DO

3051
02:08:27,080 --> 02:08:29,000
WE CARE? WHY IS IT IMPORTANT TO

3052
02:08:29,000 --> 02:08:31,560
MONITOR AND TO KNOW THAT COVID

3053
02:08:31,560 --> 02:08:33,960
PRODUCED A LARGE NUMBER OF

3054
02:08:33,960 --> 02:08:35,440
PEOPLE WITH SMELL LOSS. IF WE

3055
02:08:35,440 --> 02:08:38,520
LOOK AT DATA FROM THAT PRE-DATES

3056
02:08:38,520 --> 02:08:40,440
THE PANDEMIC OF PEOPLE LOSING

3057
02:08:40,440 --> 02:08:42,120
THEIR SENSE OF SMELL DUE TO

3058
02:08:42,120 --> 02:08:44,080
TRAUMATIC BRAIN INJURY, DUE TO

3059
02:08:44,080 --> 02:08:45,440
PARTICULAR TREATMENT OR SIMPLY

3060
02:08:45,440 --> 02:08:47,960
DUE TO OTHER VIRUSES WHAT WE

3061
02:08:47,960 --> 02:08:50,080
KNOW IS PEOPLE WITH SMELL LOSS

3062
02:08:50,080 --> 02:08:51,840
REPORT REDUCED QUALITY OF LIFE

3063
02:08:51,840 --> 02:08:54,200
AND WELL BEING. IN P AREAS OF

3064
02:08:54,200 --> 02:08:55,760
SUCH THE ONES THAT ARE INDICATED

3065
02:08:55,760 --> 02:08:59,280
IN THE GRAPH TO THE RIGHT. SO

3066
02:08:59,280 --> 02:09:01,520
PEOPLE REPORT TO THE ENJOYMENT

3067
02:09:01,520 --> 02:09:04,000
OF FOOD, MAY EAT MORE OR LESS

3068
02:09:04,000 --> 02:09:07,840
DEPENDING ON THE TYPE OF SMELL

3069
02:09:07,840 --> 02:09:10,480
DISORDERS THAT THEY HAVE. THEY

3070
02:09:10,480 --> 02:09:12,280
TAYLOR TO PERCEIVE FIRE OR GAS

3071
02:09:12,280 --> 02:09:14,920
SO THERE IS RISK OF

3072
02:09:14,920 --> 02:09:17,360
ENVIRONMENTAL HAZARDS, THEY

3073
02:09:17,360 --> 02:09:19,720
REPORT FROM PERSONALLY GENE

3074
02:09:19,720 --> 02:09:20,520
PROBLEMS WITH SOCIAL LIFE

3075
02:09:20,520 --> 02:09:22,520
CONNECTED TO THAT. AS WELL AS

3076
02:09:22,520 --> 02:09:27,880
PROBLEMS AT WORK. I PERSONALLY

3077
02:09:27,880 --> 02:09:28,680
TALKED (INAUDIBLE) DURING THE

3078
02:09:28,680 --> 02:09:30,360
PANDEMIC LOSS OF SENSE OF SMELL

3079
02:09:30,360 --> 02:09:32,240
AND THEY HAVE INABILITY TO CARRY

3080
02:09:32,240 --> 02:09:33,920
ON WITH THEIR PROFESSIONAL LIFE

3081
02:09:33,920 --> 02:09:39,000
WITH SIGNIFICANTLY IMPACTED BUT

3082
02:09:39,000 --> 02:09:41,120
IT (INAUDIBLE) EXPERIENCE

3083
02:09:41,120 --> 02:09:42,840
RECOGNIZED BY PROVIDER AND BY

3084
02:09:42,840 --> 02:09:45,320
SPECIALIST. SO THE SENSE OF

3085
02:09:45,320 --> 02:09:47,440
SMELL IS IMPORTANT AND IF WE

3086
02:09:47,440 --> 02:09:49,280
IMAGINE A LITTLE BIT OF AN

3087
02:09:49,280 --> 02:09:51,320
ICEBERG WE CAN SEE THAT WE DON'T

3088
02:09:51,320 --> 02:09:54,200
REALLY NOTICE HOW IMPORTANT IT

3089
02:09:54,200 --> 02:09:56,160
IS UNTIL WE STARTED LOSING THIS

3090
02:09:56,160 --> 02:09:59,360
FUNCTION. IT IS A REMINDER OF

3091
02:09:59,360 --> 02:10:01,720
FUNCTION WE PERFORM, LIKE HOW WE

3092
02:10:01,720 --> 02:10:03,160
ARE DIRECTING OURSELVES TO FOOD,

3093
02:10:03,160 --> 02:10:06,960
IT IMPACTS THE WAY WE EAT. HOW

3094
02:10:06,960 --> 02:10:08,520
CONNECTED TO PEOPLE, PARENTAL

3095
02:10:08,520 --> 02:10:14,040
RELATIONSHIP AS WELL AS MEETING

3096
02:10:14,040 --> 02:10:15,080
RELATIONSHIPS AND ESSENTIAL FOR

3097
02:10:15,080 --> 02:10:16,360
HAZARDS THAT ARE IN THE

3098
02:10:16,360 --> 02:10:17,680
ENVIRONMENT THAT WE CANNOT

3099
02:10:17,680 --> 02:10:20,280
DETECT OTHERWISE. PEOPLE THAT

3100
02:10:20,280 --> 02:10:22,560
HAVE COMPLETE SMELL LOSS OR EVEN

3101
02:10:22,560 --> 02:10:25,080
PARTIAL SMELL LOSS, THEY ARE --

3102
02:10:25,080 --> 02:10:29,520
THEY TEND TO BE MORE VULNERABLE.

3103
02:10:29,520 --> 02:10:31,040
SO DURING THE PANDEMIC YOU HEARD

3104
02:10:31,040 --> 02:10:33,160
A LOT OF TIMES TALKING ABOUT

3105
02:10:33,160 --> 02:10:35,000
SMELL LOSS, FOR THE FIRST TIME

3106
02:10:35,000 --> 02:10:40,920
THE PUBLIC KNEW WHAT ANOSNIA

3107
02:10:40,920 --> 02:10:42,720
MEANT BUT NOT ONLY THAT THINKING

3108
02:10:42,720 --> 02:10:43,840
COMPLETE SMELL LOSS IS NOT THE

3109
02:10:43,840 --> 02:10:47,760
WHOLE STORY, WE HAVE PEOPLE THAT

3110
02:10:47,760 --> 02:10:50,120
PARTIALLY LOST THEIR SENSE OF

3111
02:10:50,120 --> 02:10:51,080
SMALL, WE HAVE SMELL

3112
02:10:51,080 --> 02:10:52,480
DISTORTIONS.  THIS IS FROM THE

3113
02:10:52,480 --> 02:10:55,560
QUALITY OF LIFE PERSPECTIVE,

3114
02:10:55,560 --> 02:10:57,680
EVEN A MORE DEBILITATING

3115
02:10:57,680 --> 02:10:59,400
DISORDER. DRINKING YOUR COFFEE

3116
02:10:59,400 --> 02:11:01,440
WHICH IS SOMETHING MOST OF US DO

3117
02:11:01,440 --> 02:11:04,200
EVERY DAY, AND THEN IMAGINE

3118
02:11:04,200 --> 02:11:08,520
SMELLING LIKE SEWAGE OR TERRIBLE

3119
02:11:08,520 --> 02:11:11,360
SMELL EVERY MORNING DAY OF DAY.

3120
02:11:11,360 --> 02:11:17,440
SOME -- DAY AFTER DAY, SOME WITH

3121
02:11:17,440 --> 02:11:20,280
PAROSMIA CANNOT EAT MULTIPLE

3122
02:11:20,280 --> 02:11:21,840
FOODS, THEY STICK TO ONE FOOD

3123
02:11:21,840 --> 02:11:23,200
THEN CARRY ON WITH THEIR MEAL.

3124
02:11:23,200 --> 02:11:25,280
SO THIS CHEERILY CHANGES THE WAY

3125
02:11:25,280 --> 02:11:30,240
PEOPLE EXPERIENCE LIFE. SO WE

3126
02:11:30,240 --> 02:11:31,680
KNEW THAT. LIKE COUNTRY

3127
02:11:31,680 --> 02:11:34,840
SCIENTISTS WERE ALREADY AWARE OF

3128
02:11:34,840 --> 02:11:37,320
THIS LOSS THE TAXING QUALITY OF

3129
02:11:37,320 --> 02:11:39,240
LIFE CHANGES THAT THE PATIENT

3130
02:11:39,240 --> 02:11:40,680
WOULD EXPERIENCE SO WE DECIDED

3131
02:11:40,680 --> 02:11:45,560
TO GET TOGETHER AND YOU CAN ONLY

3132
02:11:45,560 --> 02:11:48,600
THE SMALL PORTION OF THE GROUP

3133
02:11:48,600 --> 02:11:50,640
THAT WE CREATED AND CO-FOUNDED

3134
02:11:50,640 --> 02:11:53,600
WHICH IS CALLED THE GOOGLE

3135
02:11:53,600 --> 02:11:55,960
CONSORTIUM FOR CHEMOSENSORY

3136
02:11:55,960 --> 02:11:58,160
RESEARCH. EARLY IN THE MAKE WE

3137
02:11:58,160 --> 02:11:59,280
JUMPED ON A ZOOM CALL BECAUSE

3138
02:11:59,280 --> 02:12:00,760
THAT'S WHEN WE STARTED GETTING

3139
02:12:00,760 --> 02:12:02,320
USED TO DOING AND WE THOUGHT

3140
02:12:02,320 --> 02:12:06,880
OKAY, WHY DON'T WE CREATE THE

3141
02:12:06,880 --> 02:12:07,960
SURVEY TO ANALYZE WHAT HAPPENS

3142
02:12:07,960 --> 02:12:11,760
TO THE SENSE OF SMELL SENSE OF

3143
02:12:11,760 --> 02:12:12,840
TEST AND SENSE OF CHEMISTRY SO

3144
02:12:12,840 --> 02:12:14,480
THOSE ARE NASAL AND ORAL

3145
02:12:14,480 --> 02:12:18,360
PROPERTIES THAT ALLOW US TO

3146
02:12:18,360 --> 02:12:22,680
EXPERIENCE TEMPERATURE AND

3147
02:12:22,680 --> 02:12:23,840
SITESES AS CARB NATION THAT ARE

3148
02:12:23,840 --> 02:12:25,080
IMPORTANT FOR THE WAY WE EAT AND

3149
02:12:25,080 --> 02:12:26,600
DRINK AND WE THOUGHT MAYBE WE

3150
02:12:26,600 --> 02:12:28,600
WOULD BE 10, 20 PEOPLE MAYBE GET

3151
02:12:28,600 --> 02:12:30,960
TO 50 PEOPLE. IN THE SPAN OF TEN

3152
02:12:30,960 --> 02:12:32,840
DAYS WE WERE MORE THAN 400

3153
02:12:32,840 --> 02:12:34,280
PEOPLE ACROSS THE WORLD. NOW WE

3154
02:12:34,280 --> 02:12:37,440
ARE MORE THAN 700 ACROSS 71

3155
02:12:37,440 --> 02:12:39,160
COUNTRIES. SO THERE WAS CLEARLY

3156
02:12:39,160 --> 02:12:41,520
A NEED FOR THE COMMUNITY TO GET

3157
02:12:41,520 --> 02:12:44,760
TOGETHER AND UNIFY TO TRY TO

3158
02:12:44,760 --> 02:12:46,520
STUDY WHAT WAS HAPPENING WITH

3159
02:12:46,520 --> 02:12:48,200
COVID-19. THESE ARE THE TWO

3160
02:12:48,200 --> 02:12:51,120
MAJOR PRODUCTS. TWO PAPERS WITH

3161
02:12:51,120 --> 02:12:53,600
A LOT OF AUTHORS SO IMAGINE HOW

3162
02:12:53,600 --> 02:12:54,760
THE WRIGHT WRITHE THOSE PAPERS

3163
02:12:54,760 --> 02:12:57,680
FOR A SECOND. BUT WE WERE ABLE

3164
02:12:57,680 --> 02:13:00,040
TO PRODUCE SOME RESULTS THAT

3165
02:13:00,040 --> 02:13:02,840
REALLY HAD EXTERNAL VALIDI VALIO

3166
02:13:02,840 --> 02:13:04,760
COULD BE GENERALIZABLE TO A

3167
02:13:04,760 --> 02:13:06,120
LARGE PORTION OF THE POPULATION

3168
02:13:06,120 --> 02:13:08,240
BECAUSE WE WERE ABLE TO COLLECT

3169
02:13:08,240 --> 02:13:11,240
FROM SUCH DIVERSE PLACES.  MOST

3170
02:13:11,240 --> 02:13:13,120
OF THIS DATA THAT I AM

3171
02:13:13,120 --> 02:13:14,040
PRESENTING ARE SELF-REPORTS.

3172
02:13:14,040 --> 02:13:15,360
PARTLY BECAUSE THIS IS WHAT WE

3173
02:13:15,360 --> 02:13:17,280
WERE ALLOWED TO DO IN THE

3174
02:13:17,280 --> 02:13:18,160
GENERAL POPULATION AT THE

3175
02:13:18,160 --> 02:13:20,000
BEGINNING OF THE PANDEMIC. IT

3176
02:13:20,000 --> 02:13:23,320
WAS HARD AND WE DIDN'T HAVE THE

3177
02:13:23,320 --> 02:13:27,640
FUNDS TO PROVIDE PSYCHOPHYSICAL

3178
02:13:27,640 --> 02:13:29,880
TESTS TO EVERYONE SO ONE WE ASK

3179
02:13:29,880 --> 02:13:32,240
Z PEOPLE HOW WAS YOUR SENSE OF

3180
02:13:32,240 --> 02:13:33,600
SMELL BEFORE COVID AND HOW IT IS

3181
02:13:33,600 --> 02:13:36,400
DURING COVID- COVID-19. SOMETHIE

3182
02:13:36,400 --> 02:13:38,560
THAN 4,000 PEOPLE AND AS YOU CAN

3183
02:13:38,560 --> 02:13:40,040
SEE FROM THE GRAPH ON THE Y AXIS

3184
02:13:40,040 --> 02:13:46,320
THE SMELL RATING YOU SEE WE HAVE

3185
02:13:46,320 --> 02:13:48,320
CREATED 80 POINTS. SO PEOPLE

3186
02:13:48,320 --> 02:13:49,760
LOST THEIR COMPLETELY LOSS THEIR

3187
02:13:49,760 --> 02:13:51,480
SENSE OF SMELL AND IT WAS

3188
02:13:51,480 --> 02:13:54,480
SUDDEN, IT WAS NOT NASAL

3189
02:13:54,480 --> 02:13:57,080
OBSTRUCTION. WE THOUGHT THIS

3190
02:13:57,080 --> 02:13:59,800
WOULD BE A CONDUCTIVE DISORDER

3191
02:13:59,800 --> 02:14:01,440
AND PEOPLE WOULD REGAIN THEIR

3192
02:14:01,440 --> 02:14:04,160
SENSE OF SMELL AS EXPECTED.  BUT

3193
02:14:04,160 --> 02:14:07,040
WE WERE WRONG. THIS WAS NOT THE

3194
02:14:07,040 --> 02:14:09,160
MECHANISM BEHIND THE SENSE OF

3195
02:14:09,160 --> 02:14:10,840
SMELL. WE KEPT GOING WITH THE

3196
02:14:10,840 --> 02:14:12,640
SURVEY WE HAVE IN 35 LANGUAGES,

3197
02:14:12,640 --> 02:14:13,520
AND WE ARE PARTICULARLY

3198
02:14:13,520 --> 02:14:15,000
INTERESTED IN SEEING WHAT WOULD

3199
02:14:15,000 --> 02:14:19,880
HAPPEN AT THE BEGINNING OF FLU

3200
02:14:19,880 --> 02:14:20,560
SEASON IN THE NORTHERN

3201
02:14:20,560 --> 02:14:23,960
HEMISPHERE AND DEVICE A STUDY

3202
02:14:23,960 --> 02:14:28,160
KNOWING WHAT OUR COLLEAGUES IN

3203
02:14:28,160 --> 02:14:30,200
SOUTHERN INDIA HAD EXPERIEN EXP 

3204
02:14:30,200 --> 02:14:33,360
WE ENROLLED 808,000 PEOPLE GIVE

3205
02:14:33,360 --> 02:14:35,000
OR TAKE AND HAVE TWO GROUPS

3206
02:14:35,000 --> 02:14:36,680
BASED ON THE RESULTS TO THE

3207
02:14:36,680 --> 02:14:39,920
COVID-19 PCR TEST AT THE TIME.  

3208
02:14:39,920 --> 02:14:42,560
AND WE WERE ABLE TO DETERMINE

3209
02:14:42,560 --> 02:14:43,680
UNDER SELF-REPORT WHAT ARE

3210
02:14:43,680 --> 02:14:46,360
PEOPLE WITH THE FLU OR WITH

3211
02:14:46,360 --> 02:14:48,280
COVID-19 HAD A DIFFERENT RATIO

3212
02:14:48,280 --> 02:14:51,520
OF SMELL DISORDER. WE EXPECTED

3213
02:14:51,520 --> 02:14:54,720
BROTH GROUPS HAD REDUCTION IN

3214
02:14:54,720 --> 02:14:56,720
SMELL LOSS AND SMELL LOSS IN

3215
02:14:56,720 --> 02:14:57,960
RESPONDING REPORTED SMELL

3216
02:14:57,960 --> 02:15:02,120
FUNCTION BUT COVID-19 GROUP WAS

3217
02:15:02,120 --> 02:15:03,240
QUITE MAGNIFIED IN THAT

3218
02:15:03,240 --> 02:15:05,240
EXPERIENCE. WE WERE ABLE BY

3219
02:15:05,240 --> 02:15:07,160
LOOKING DIFFERENT WAY TO ASK THE

3220
02:15:07,160 --> 02:15:10,400
QUESTION TO IDENTIFY WHAT IS THE

3221
02:15:10,400 --> 02:15:11,840
MOST CONCISE QUESTION TO GIVE US

3222
02:15:11,840 --> 02:15:13,040
THE BEST INFORMATION TO IDENTIFY

3223
02:15:13,040 --> 02:15:15,400
WHETHER SMELL OR TASTE ARE

3224
02:15:15,400 --> 02:15:18,840
INDICATERS OF COVID-19. AND

3225
02:15:18,840 --> 02:15:20,680
BASED ON OUR SURVEY WHAT WE WERE

3226
02:15:20,680 --> 02:15:23,240
ABLE TO DETERMINE IS THAT THE

3227
02:15:23,240 --> 02:15:25,240
QUESTION THAT IS A READING

3228
02:15:25,240 --> 02:15:27,640
QUESTION FROM SCALE OF 0 TO 100

3229
02:15:27,640 --> 02:15:29,240
ABOUT YOUR CURRENT ABILITY TO

3230
02:15:29,240 --> 02:15:32,760
SMELL WAS ABLE TO DISCRIMINATE

3231
02:15:32,760 --> 02:15:35,760
PEOPLE WITH COVID-19 FROM PEOPLE

3232
02:15:35,760 --> 02:15:38,360
THAT HAVE RESPIRATORY DISORDER

3233
02:15:38,360 --> 02:15:41,600
THAT WAS NOT COVID-19 WITH AN

3234
02:15:41,600 --> 02:15:44,080
ACCURACY OF 71%. SO AS YOU CAN

3235
02:15:44,080 --> 02:15:47,320
SEE IN THE RSV CURVE HERE I

3236
02:15:47,320 --> 02:15:48,800
WOULD LOVE TO POINT TO IF I CAN

3237
02:15:48,800 --> 02:15:51,320
GET TO THAT. WE HAVE ON THE Y

3238
02:15:51,320 --> 02:15:55,880
AXIS THE SENSITIVITY, AND ON THE

3239
02:15:55,880 --> 02:15:58,680
X AXIS ONE MINUS SPECIFICITY, WE

3240
02:15:58,680 --> 02:16:00,680
WANT THIS TO BE AS CLOSE TO .1

3241
02:16:00,680 --> 02:16:03,120
AS POSSIBLE. TO DETERMINE THIS

3242
02:16:03,120 --> 02:16:06,840
IS A GOOD TEST. SO SMELL ALONE

3243
02:16:06,840 --> 02:16:09,480
LOOKING AT ONE QUESTION ALLOW US

3244
02:16:09,480 --> 02:16:11,480
TO DISCRIMINATE COVID-19

3245
02:16:11,480 --> 02:16:14,160
POSITIVE FROM NEGATIVE BY 71%

3246
02:16:14,160 --> 02:16:15,600
WHICH IS A APPROXIMATELY 20%

3247
02:16:15,600 --> 02:16:17,840
BETTER THAN WHAT THE CDC TRIAL

3248
02:16:17,840 --> 02:16:19,040
WAS DOING AT THE TIME IN THE

3249
02:16:19,040 --> 02:16:24,200
SAME POPULATION.  ASKING ABOUT

3250
02:16:24,200 --> 02:16:25,480
FEVER OR COUGH OR RESPIRATORY

3251
02:16:25,480 --> 02:16:27,120
ISSUE WAS NOT A GOOD METRIC TO

3252
02:16:27,120 --> 02:16:29,480
DISCRIMINATE PEOPLE THAT HAVE A

3253
02:16:29,480 --> 02:16:30,720
RESPIRATORY DISORDER BUT NOT

3254
02:16:30,720 --> 02:16:38,080
COVID-19. WE THINK OF

3255
02:16:38,080 --> 02:16:39,560
SELF-REPORT AS LOWEST LEVEL OF

3256
02:16:39,560 --> 02:16:41,360
EVIDENCE WE CAN HAVE SO WHY EVEN

3257
02:16:41,360 --> 02:16:42,560
INVEST IN ASKING PEOPLE

3258
02:16:42,560 --> 02:16:45,600
QUESTIONS ABOUT THEIR

3259
02:16:45,600 --> 02:16:48,680
EXPERIENCES ABOUT THE SENSES. 

3260
02:16:48,680 --> 02:16:50,040
PARTICULARLY IN OLFACTION PEOPLE

3261
02:16:50,040 --> 02:16:51,680
DON'T HAVE A GENERAL GOOD LEVEL

3262
02:16:51,680 --> 02:16:53,440
OF AWARENESS WHAT CAN THEY TELL

3263
02:16:53,440 --> 02:16:55,160
US? THEY CAN TELL US A LOT. SO

3264
02:16:55,160 --> 02:16:58,200
FROM A PUBLIC HEALTH PERSPECTIVE

3265
02:16:58,200 --> 02:17:00,160
DURING THE FIRST WAVE OF COVID

3266
02:17:00,160 --> 02:17:03,280
WE REALIZE THAT ASKING PEOPLE TO

3267
02:17:03,280 --> 02:17:04,480
MONITOR SENSE OF SMELL WOULD

3268
02:17:04,480 --> 02:17:09,880
HAVE BEEN A GREAT WAY TO

3269
02:17:09,880 --> 02:17:11,400
DETERMINE SPREAD OF THE DISEASE.

3270
02:17:11,400 --> 02:17:15,040
SO FROM THE DATA IN THE GCCPR WE

3271
02:17:15,040 --> 02:17:16,960
SINGLED OUT DATA IN FRANCE WHERE

3272
02:17:16,960 --> 02:17:18,640
THERE WAS A GOVERNMENTAL INDEX,

3273
02:17:18,640 --> 02:17:20,680
THAT WAS ALLOWED TO -- THAT

3274
02:17:20,680 --> 02:17:23,680
ALLOWED TO PREDICT WHETHER ICU

3275
02:17:23,680 --> 02:17:25,280
SPECIFIC DEPARTMENTS AND REGIONS

3276
02:17:25,280 --> 02:17:28,000
WERE BECOMING OVERWHELMED DUE TO

3277
02:17:28,000 --> 02:17:30,440
COVID-19 INFECTION. AND OF

3278
02:17:30,440 --> 02:17:32,240
COURSE YOU CAN SEE FROM THE

3279
02:17:32,240 --> 02:17:34,520
FIRST GRAPH IN THE MAP OF FRANCE

3280
02:17:34,520 --> 02:17:35,880
THE GREEN DEPARTMENTS WERE THE

3281
02:17:35,880 --> 02:17:37,240
DEPARTMENTS WHERE COVID-19 WAS

3282
02:17:37,240 --> 02:17:43,240
UNDER CONTROL AND THERE WERE NO

3283
02:17:43,240 --> 02:17:43,880
ICU CELT WITH THE PATIENT LEVEL

3284
02:17:43,880 --> 02:17:45,200
AND THE RED WERE THE ONES THAT

3285
02:17:45,200 --> 02:17:47,360
WERE OVERWHELMED. IF WE START

3286
02:17:47,360 --> 02:17:52,920
LOOK AT THE NUMBER OF PEOPLE

3287
02:17:52,920 --> 02:17:54,360
THAT REPORT CHANGES IN SURVEY WE

3288
02:17:54,360 --> 02:17:56,600
CAN SEE CORRELATION OF .85%

3289
02:17:56,600 --> 02:17:57,960
INDICATING THAT THE PEOPLE

3290
02:17:57,960 --> 02:18:00,840
RESPONDING TO OUR SURVEY HAVING

3291
02:18:00,840 --> 02:18:07,960
SMELL AN TASTE WERE IN AREAS

3292
02:18:07,960 --> 02:18:10,000
LIKELY IN THE I C,Ds WHEN WE

3293
02:18:10,000 --> 02:18:12,120
START MAPPING THE TEMPORAL

3294
02:18:12,120 --> 02:18:14,320
DIMENSION OF THE SMELL AND TEST

3295
02:18:14,320 --> 02:18:15,440
CHANGES WE WERE ABLE TO PRE-DATE

3296
02:18:15,440 --> 02:18:24,880
BY TEN DAYS THE ICU OVERWHELMED 

3297
02:18:24,880 --> 02:18:28,120
THE GOVERNMENT WAS ONLY ABLE TO

3298
02:18:28,120 --> 02:18:32,920
GIVE -- SO IF WE HAVE A SYSTEM

3299
02:18:32,920 --> 02:18:34,960
WICK WE CAN TRAIK SMELL AND

3300
02:18:34,960 --> 02:18:39,600
TASTE WE MAY ABLE TO MAKE AN

3301
02:18:39,600 --> 02:18:40,520
EVEN BETTER PUBLIC HEALTH

3302
02:18:40,520 --> 02:18:42,400
DECISIODECISION.  THIS IS NOT TD

3303
02:18:42,400 --> 02:18:44,600
OF THE STORY. THE SELF-REPORTS

3304
02:18:44,600 --> 02:18:46,960
CAN BE HELPFUL WHEN USED IN A

3305
02:18:46,960 --> 02:18:49,320
CERTAIN CONTEXT, CAN PROVIDE

3306
02:18:49,320 --> 02:18:51,880
HELPFUL INFORMATION BUT THEY

3307
02:18:51,880 --> 02:18:53,240
DON'T PROVIDE THE BEST LEVEL OF

3308
02:18:53,240 --> 02:18:54,680
EVIDENCE. IF WE CONSIDER THE

3309
02:18:54,680 --> 02:18:57,040
PEOPLE A THAT HAVE COVID-19 AND

3310
02:18:57,040 --> 02:18:59,880
COMPARE THOSE THAT HAVE

3311
02:18:59,880 --> 02:19:01,160
SELF-REPORTED SMELL LOSS VERSUS

3312
02:19:01,160 --> 02:19:03,600
THOSE TESTED WITH PHYSICAL

3313
02:19:03,600 --> 02:19:06,880
TESTS, WE CAN SEE THAT WE ARE

3314
02:19:06,880 --> 02:19:07,840
UNDERESTIMATING THE PREVALENCE

3315
02:19:07,840 --> 02:19:12,560
OF SMELL LOSS BY 27%.  SO WE

3316
02:19:12,560 --> 02:19:14,480
NEED A TAX TO MAKE SURE WE ARE

3317
02:19:14,480 --> 02:19:15,400
NOT LEAVING A QUARTER OF PEOPLE

3318
02:19:15,400 --> 02:19:17,280
ON THE TABLE AND NOT ADDRESSING

3319
02:19:17,280 --> 02:19:19,640
THEIR LOSS.  A THIS IS

3320
02:19:19,640 --> 02:19:23,320
PARTICULARLY TRUE FOR KIDS, AND

3321
02:19:23,320 --> 02:19:25,360
INCUMBENT I WAS REALLY SHOCKED

3322
02:19:25,360 --> 02:19:27,680
TO LOOK AT THE MIXTURE AND SEE

3323
02:19:27,680 --> 02:19:28,840
THE BEST EVIDENCE WE HAVE FOR

3324
02:19:28,840 --> 02:19:30,600
CHILDREN WHEN IT COMES TO ASKING

3325
02:19:30,600 --> 02:19:33,080
ABOUT THEIR OWN SENSORY

3326
02:19:33,080 --> 02:19:35,640
PERCEPTION IS ASKING THEIR

3327
02:19:35,640 --> 02:19:37,200
PARENTS. YOU CAN ASK EVERYONE

3328
02:19:37,200 --> 02:19:39,160
ELSE WHO REPORTS FOR YOU WHAT

3329
02:19:39,160 --> 02:19:41,080
YOUR EXPERIENCE IS, PRETTY SURE

3330
02:19:41,080 --> 02:19:42,360
TO COME UP WITH RESULTS THAT ARE

3331
02:19:42,360 --> 02:19:46,360
NOT PARTICULARLY ACCURATE. ONLY

3332
02:19:46,360 --> 02:19:48,160
TWO STUDIES OVER THE COURSE OF

3333
02:19:48,160 --> 02:19:50,160
THIS INCLUDING OMICRON AND UNTIL

3334
02:19:50,160 --> 02:19:55,200
A COUPLE OF WEEKS THAT HAVE

3335
02:19:55,200 --> 02:19:57,480
PSYCHOPHYSICAL STATUS IN KIDS SO

3336
02:19:57,480 --> 02:20:00,040
WE DON'T KNOW IF IN PANDEMIC THE

3337
02:20:00,040 --> 02:20:01,600
SMELL LOSS WAS PRIMARY SYMPTOMS

3338
02:20:01,600 --> 02:20:04,960
WE DONE KNOW WHAT OUR KIDS ARE

3339
02:20:04,960 --> 02:20:06,120
EXPERIENCING AND THEIR

3340
02:20:06,120 --> 02:20:07,840
LIVELIHOOD AND FUTURE LIVELIHOOD

3341
02:20:07,840 --> 02:20:10,920
WILL BE IMPACTED.  WE HAVE DO

3342
02:20:10,920 --> 02:20:12,480
HAVE SMELL TESTS AND WE HAVE

3343
02:20:12,480 --> 02:20:13,320
STANDARDIZED SMELL TESTS THAT

3344
02:20:13,320 --> 02:20:16,960
HAVE BEEN USED FOR RESEARCH

3345
02:20:16,960 --> 02:20:20,680
PURPOSES FOR MANY, MANY YEARS. 

3346
02:20:20,680 --> 02:20:21,920
THESE TOOLS WERE NOT

3347
02:20:21,920 --> 02:20:25,040
PARTICULARLY HELPFUL DURING THE

3348
02:20:25,040 --> 02:20:27,360
PANDEMIC SO ON THE LAST WE HAVE

3349
02:20:27,360 --> 02:20:30,480
THE SMELL IDENTIFICATION TEST

3350
02:20:30,480 --> 02:20:32,360
AND UPDATES, ONE OF THE GOLD

3351
02:20:32,360 --> 02:20:34,280
STANDARD BUT IT IS A BOOKLET AND

3352
02:20:34,280 --> 02:20:36,400
IT HAS 40 ORDER AND REQUIRES A

3353
02:20:36,400 --> 02:20:39,320
-- TO COIN TO SCRATCH AND

3354
02:20:39,320 --> 02:20:41,400
RELEASE THE ODOR. IMAGINE USING

3355
02:20:41,400 --> 02:20:42,800
THE ENTRANCE OF THE BUILDING IT

3356
02:20:42,800 --> 02:20:44,320
WOULD TAKE THREE DAYS FOR PEOPLE

3357
02:20:44,320 --> 02:20:48,200
TO GET IN. NOT HELPFUL. SNIFF --

3358
02:20:48,200 --> 02:20:50,040
GREAT SUBSTANCE GREAT TEST YOU

3359
02:20:50,040 --> 02:20:51,560
HAVE THREE SUBTESTS AND YOU CAN

3360
02:20:51,560 --> 02:20:53,320
MEASURE SENSITIVITY,

3361
02:20:53,320 --> 02:20:56,480
DISCRIMINATION, IDENTIFICATION,

3362
02:20:56,480 --> 02:20:59,160
TAKE 45 MINUTES AND YOU HAVE TO

3363
02:20:59,160 --> 02:21:01,520
USE THE SAME PEN UNDER MULTIPLE

3364
02:21:01,520 --> 02:21:05,680
PEOPLE, NOT IDEAL IN A PANDEMIC.

3365
02:21:05,680 --> 02:21:08,440
SO WE HAVE THE NIH OLFACTORY

3366
02:21:08,440 --> 02:21:10,560
TOOLBOX MUCH BETTER TO MINE

3367
02:21:10,560 --> 02:21:11,280
ODORS BUT LITTLE TOO LONG FOR

3368
02:21:11,280 --> 02:21:12,840
THE EXPERIENCE. INSTEAD OF COST,

3369
02:21:12,840 --> 02:21:14,640
NUMBER OF ODORS, WHAT WE ARE

3370
02:21:14,640 --> 02:21:16,640
MEASURING AND HOW MUCH TIME IT

3371
02:21:16,640 --> 02:21:18,360
TAKES, WOULD SEE THE MAJORITY OF

3372
02:21:18,360 --> 02:21:20,800
THIS TEST TO FOCUS ON ONE

3373
02:21:20,800 --> 02:21:22,600
OLFACTORY FUNCTION ONLY, ODOR

3374
02:21:22,600 --> 02:21:25,480
IDENTIFICATION. WHICH IS A GREAT

3375
02:21:25,480 --> 02:21:27,120
FUNCTION BUT IT MAY NOT TELL THE

3376
02:21:27,120 --> 02:21:29,480
WHOLE STORY ABOUT WHY WE HAVE A

3377
02:21:29,480 --> 02:21:30,880
SENSE OF SMELL IN THE FIRST

3378
02:21:30,880 --> 02:21:33,760
PLACE. WE ARE NOT TO GO AROUND

3379
02:21:33,760 --> 02:21:36,520
AND NAME ODOR OBJECTS

3380
02:21:36,520 --> 02:21:40,440
NECESSARILY. YET OLFACTION AS

3381
02:21:40,440 --> 02:21:41,960
PATIENT TELL US PROVIDES A LOT

3382
02:21:41,960 --> 02:21:47,120
OF INFORMATION THAT MAKES OUR

3383
02:21:47,120 --> 02:21:49,960
LIVES -- WE HAVE THE REGULAR APP

3384
02:21:49,960 --> 02:21:51,360
COSTS APPROXIMATELY $30 SO

3385
02:21:51,360 --> 02:21:54,960
IMAGINE APPLYING THIS COST TO A

3386
02:21:54,960 --> 02:21:58,080
POPULATION, THE VALENCE PIPELINE

3387
02:21:58,080 --> 02:21:59,600
UPWARD WOULD BE EXTREMELY

3388
02:21:59,600 --> 02:22:01,720
EXPENSIVE. SO WHILE WE DO HAVE

3389
02:22:01,720 --> 02:22:03,080
TOOLS, THOSE TOOLS DUE TO COST

3390
02:22:03,080 --> 02:22:04,840
THE DURATION OF THE TOOLS THAT

3391
02:22:04,840 --> 02:22:05,840
TRAINING REQUIREMENTS OF THE

3392
02:22:05,840 --> 02:22:07,640
PEOPLE ADMINISTERING THE TOOLS,

3393
02:22:07,640 --> 02:22:10,120
ARE NOT REALLY AN OPTION WHEN IT

3394
02:22:10,120 --> 02:22:13,560
COMES TO HAVING POPULATION

3395
02:22:13,560 --> 02:22:14,760
SURVEY SCREEN OF SMELL FUNCTION.

3396
02:22:14,760 --> 02:22:22,560
THIS IS WHAT THE AWARD THAT CAME

3397
02:22:22,560 --> 02:22:24,320
IN. -AWARD PROPOSED TO DEVELOP

3398
02:22:24,320 --> 02:22:28,160
AND INNOVATE CREATE NEW TASKS

3399
02:22:28,160 --> 02:22:30,040
SPECIFICALLY TO CHEMOSENSORY

3400
02:22:30,040 --> 02:22:32,040
ISSUES WITHIN COVID-19 AND

3401
02:22:32,040 --> 02:22:34,520
PRODUCES FOUR SOLUTIONS, AND IN

3402
02:22:34,520 --> 02:22:38,400
IS ONE OF THE EXAMPLE OF IN OUR

3403
02:22:38,400 --> 02:22:41,080
SMALL WORLD, ATTEMPT OF DATA

3404
02:22:41,080 --> 02:22:43,840
STANDARDS THAT ARE REQUIRED TO

3405
02:22:43,840 --> 02:22:47,280
REPORT LIKE DATA IN THE SAME WAY

3406
02:22:47,280 --> 02:22:48,840
AS AN OLD SCHOOL AD OF DIFFERENT

3407
02:22:48,840 --> 02:22:52,080
TESTS THAT EACH OF O OUR GROUPS

3408
02:22:52,080 --> 02:22:53,720
PRESENTED. SO TO GIVE YOU AN

3409
02:22:53,720 --> 02:22:55,960
IDEA OF THE TYPE OF INNOVATIONS

3410
02:22:55,960 --> 02:22:57,200
THAT WE -- THAT WAS INTRODUCED

3411
02:22:57,200 --> 02:22:59,600
THROUGH THIS AWARD, WE HAVE THE

3412
02:22:59,600 --> 02:23:03,320
AROMA T AND THIS IS A TEST, THE

3413
02:23:03,320 --> 02:23:06,440
FIRST RAPID TEST FOR DETECTION

3414
02:23:06,440 --> 02:23:08,080
OF SMELL FUNCTION. IT IS A CARD

3415
02:23:08,080 --> 02:23:13,120
THAT IS KIND OF LIKE A LARGE

3416
02:23:13,120 --> 02:23:17,720
NOTEBOOK, YOU HAVE 16 WITH

3417
02:23:17,720 --> 02:23:19,560
DIFFERENT CONCENTRATIONS IN THIS

3418
02:23:19,560 --> 02:23:22,080
CASE CEA. BASED ON RESPONSES OF

3419
02:23:22,080 --> 02:23:23,760
PARTICULAR THIS IS ADAPTIVE

3420
02:23:23,760 --> 02:23:25,000
VISION ALGORITHM THAT ALLOWS TO

3421
02:23:25,000 --> 02:23:27,360
DETERMINE WHICH IS THE MAXIMUM

3422
02:23:27,360 --> 02:23:31,800
YOU HAVE TO SMELL. THE AUTHORS

3423
02:23:31,800 --> 02:23:33,680
DR. HAYES AND (INAUDIBLE) WERE

3424
02:23:33,680 --> 02:23:37,360
ABLE TO DETERMINE WHAT THIS TEST

3425
02:23:37,360 --> 02:23:39,600
THAT WOMEN TENDED TO HAVE HIGHER

3426
02:23:39,600 --> 02:23:41,400
DECEPTION THRESHOLD THAN MEN AND

3427
02:23:41,400 --> 02:23:43,280
YOUNGER PEOPLE HAVE YOUNGER

3428
02:23:43,280 --> 02:23:44,800
SENSE OF SMELL SENSITIVITY

3429
02:23:44,800 --> 02:23:46,920
COMPARED TO OLDER PEOPLE WHICH

3430
02:23:46,920 --> 02:23:49,320
WAS A GOOD -- TO SEE THIS TOOL

3431
02:23:49,320 --> 02:23:50,000
REPRODUCED WHAT WE KNEW TO BE

3432
02:23:50,000 --> 02:23:58,000
TRUE.  SECONDS IS AROMA TEST.

3433
02:23:58,000 --> 02:24:01,120
THIS HAS CARD WITH THREE ODORS,

3434
02:24:01,120 --> 02:24:02,440
(INAUDIBLE) DISCRIMINATION AND

3435
02:24:02,440 --> 02:24:05,880
PEOPLE CAN RESPOND TO THOSE

3436
02:24:05,880 --> 02:24:07,600
QUESTIONS BUT SMELLING THE CARD

3437
02:24:07,600 --> 02:24:08,720
AND RESPONDING ON ELECTRONIC

3438
02:24:08,720 --> 02:24:10,440
INTERFACE.  INTERESTINGLY THIS

3439
02:24:10,440 --> 02:24:16,400
IS THE ONLY RAPID TEST THAT

3440
02:24:16,400 --> 02:24:18,400
LOOKS AT DISCRIMINATION AND

3441
02:24:18,400 --> 02:24:19,760
SMALL SAMPLE OF PATIENTS WITH

3442
02:24:19,760 --> 02:24:21,680
COVID-19 AND PATIENTS THAT HAVE

3443
02:24:21,680 --> 02:24:23,520
RESPIRATORY DISORDER BUT NOT

3444
02:24:23,520 --> 02:24:25,040
COVID-19. THE TEST WITH A FEW

3445
02:24:25,040 --> 02:24:26,760
TRIALS EVEN ONE TRIAL WAS

3446
02:24:26,760 --> 02:24:27,800
SIGNIFICANTLY DISCRIMINATED

3447
02:24:27,800 --> 02:24:29,160
BETWEEN THE TWO GROUPS SO PEOPLE

3448
02:24:29,160 --> 02:24:32,200
WITH COVID HAVE LOWER

3449
02:24:32,200 --> 02:24:33,240
DISCRIMINATION OF THE

3450
02:24:33,240 --> 02:24:35,680
(INAUDIBLE) THAT DON'T HAVE

3451
02:24:35,680 --> 02:24:40,840
COVID-19. ONE OF MY FAVORITE

3452
02:24:40,840 --> 02:24:44,240
EXPERIMENT EVEN WE COULD DO IN

3453
02:24:44,240 --> 02:24:46,720
OUR OWN HOUSE, NOT AS CONTROL AS

3454
02:24:46,720 --> 02:24:47,880
THIS TEAM PUT TOGETHER BUT THIS

3455
02:24:47,880 --> 02:24:50,240
IS THE HARD CANDY TEST. SO THESE

3456
02:24:50,240 --> 02:24:58,800
TEAMS CREATED SOME HA HARD CANDY

3457
02:24:58,800 --> 02:24:59,440
WITH DIFFERENT POLICE OFFICER

3458
02:24:59,440 --> 02:25:03,320
FLAVORS AND ASKED THEM TO SMELL

3459
02:25:03,320 --> 02:25:06,280
FROM NOSTRILS AND THEN PUT INTO

3460
02:25:06,280 --> 02:25:07,360
THEIR MOUTH AND WHAT WAS THE

3461
02:25:07,360 --> 02:25:08,800
NASAL EXPERIENCE SO MEASURING

3462
02:25:08,800 --> 02:25:09,600
SMELL FUNCTION FROM TWO

3463
02:25:09,600 --> 02:25:12,360
PATHWAYS.  WHAT YOU SEE IN THE

3464
02:25:12,360 --> 02:25:17,640
GRAPH HERE IS THAT BY USING THIS

3465
02:25:17,640 --> 02:25:18,640
GAUSSIAN PROGRESS REGRESSION

3466
02:25:18,640 --> 02:25:22,240
THEY WERE ABLE TO SUGGEST THE

3467
02:25:22,240 --> 02:25:23,480
REASON MARCH TO DIP IN THE

3468
02:25:23,480 --> 02:25:24,800
RATINGINGS AROUND THE TIM OF

3469
02:25:24,800 --> 02:25:28,520
DIAGNOSIS WITH COVID-19 SHOWING

3470
02:25:28,520 --> 02:25:31,760
THAT EVEN RENAL FACTION IS

3471
02:25:31,760 --> 02:25:33,360
IMPAIRED WITH COVID. LAST BUT

3472
02:25:33,360 --> 02:25:36,440
NOT LEAST I WILL TALK ABOUT THE

3473
02:25:36,440 --> 02:25:38,240
TEST MY GROUP AND DR. PAMELA

3474
02:25:38,240 --> 02:25:41,240
DALTON AND OTHERS DEVELOPED

3475
02:25:41,240 --> 02:25:45,160
CALLED SCENTINEL. I HAVE A

3476
02:25:45,160 --> 02:25:48,880
COUPLE OF EXAMPLES, CURIOUS TO

3477
02:25:48,880 --> 02:25:50,240
SEE HOW IT WORKS. GOING TO HAVE

3478
02:25:50,240 --> 02:25:52,280
IT IN YOUR HANDS SHORTLY IF YOU

3479
02:25:52,280 --> 02:25:54,160
WANT. THIS IS A SIMPLE TEST,

3480
02:25:54,160 --> 02:25:56,520
THERE'S ONLY ONE ODO ODOR. THE ,

3481
02:25:56,520 --> 02:25:58,920
THE POSSIBLE ODORS ARE

3482
02:25:58,920 --> 02:25:59,840
(INAUDIBLE). YOU HAVE 27

3483
02:25:59,840 --> 02:26:03,240
VERSIONS OF THE TEST BY

3484
02:26:03,240 --> 02:26:07,240
INTERSECTING THE POSITION ODOR

3485
02:26:07,240 --> 02:26:09,200
AND TYPE OF DOOR. SO YOU CAN

3486
02:26:09,200 --> 02:26:11,000
TEST THEM FOR A MONTH BUT

3487
02:26:11,000 --> 02:26:12,360
WITHOUT USING THE SAME EXACT

3488
02:26:12,360 --> 02:26:13,840
TEST.  WE HAVE THREE QUESTIONS

3489
02:26:13,840 --> 02:26:15,000
SO AGAIN THIS IS A

3490
02:26:15,000 --> 02:26:16,160
MULTI-FUNCTION TEST SO WE ASK

3491
02:26:16,160 --> 02:26:17,720
PEOPLE WHERE IS THE ODOR, HOW

3492
02:26:17,720 --> 02:26:24,360
STRONG IS THE ODOR, AND WHAT IS

3493
02:26:24,360 --> 02:26:26,840
THE ODOR AND FOUR OPTIONS FOR

3494
02:26:26,840 --> 02:26:28,600
THE USUAL TEST. L WHAT WE LEARN

3495
02:26:28,600 --> 02:26:30,840
BY ASKING THE THREE SIMPLE

3496
02:26:30,840 --> 02:26:32,120
QUESTIONS THIS IS AS GOOD AS ONE

3497
02:26:32,120 --> 02:26:33,440
OF THE GOLD STANDARDS THAT HAVE

3498
02:26:33,440 --> 02:26:35,760
BEEN USED IN THE PAST WHICH IS

3499
02:26:35,760 --> 02:26:37,880
THE NIH ODOR IDENTIFICATION

3500
02:26:37,880 --> 02:26:40,560
TOOLBOX. THAT TAKES A FOUR TIMES

3501
02:26:40,560 --> 02:26:43,880
THE TIME TO REACH THE SAME

3502
02:26:43,880 --> 02:26:45,080
CONCLUSION. HERE IN PARTICULAR

3503
02:26:45,080 --> 02:26:47,520
WHAT YOU SEE IS THAT THIS TEST

3504
02:26:47,520 --> 02:26:50,200
IS 95% ACCURACY IN THE

3505
02:26:50,200 --> 02:26:51,440
DISCRIMINATING PEOPLE THAT ARE

3506
02:26:51,440 --> 02:26:52,360
(INAUDIBLE) SO THEY HAVE

3507
02:26:52,360 --> 02:26:53,120
COMPLETE SMELL LOSS VERSUS

3508
02:26:53,120 --> 02:27:00,000
PEOPLE THAT ARE NORMAL. WE

3509
02:27:00,000 --> 02:27:03,520
TESTED PEOPLE THAT WE SEND THEM

3510
02:27:03,520 --> 02:27:05,800
VIA MAIL AND AFFORDABLE AND

3511
02:27:05,800 --> 02:27:07,800
PORTABLE AND EASY TO USE.  LATER

3512
02:27:07,800 --> 02:27:09,600
IN THE PANDEMIC WE REALIZED THE

3513
02:27:09,600 --> 02:27:10,840
QUESTIONS ARE NOT ENOUGH TO MAP

3514
02:27:10,840 --> 02:27:13,080
ALL THE DISORDERS OLFACTORY

3515
02:27:13,080 --> 02:27:16,080
DISORDERS EMERGING OUTS OF THE

3516
02:27:16,080 --> 02:27:18,320
PANDEMIC, IN PARTICULAR PARASMIA

3517
02:27:18,320 --> 02:27:21,080
IS A DISORDER IS DISORDER LESS

3518
02:27:21,080 --> 02:27:22,960
OUT. IN THE TEST COMMERCIALLY

3519
02:27:22,960 --> 02:27:25,000
AVAILABLE TEST I PRESENTED YOU

3520
02:27:25,000 --> 02:27:33,080
THERE IS NO TEST FOR PAROSNIA. 

3521
02:27:33,080 --> 02:27:34,160
SHOW YOU NEED (INAUDIBLE) TODAY.

3522
02:27:34,160 --> 02:27:35,720
HOW PLEASANT IS THE ODOR,

3523
02:27:35,720 --> 02:27:37,640
IMAGINE THE ODOR OF VOMIT AND

3524
02:27:37,640 --> 02:27:41,120
HOW UNPLEASANT IT IS.  IS ABLE

3525
02:27:41,120 --> 02:27:44,200
TO DISCRIMINATE PEOPLE TEND NOT

3526
02:27:44,200 --> 02:27:45,560
TO LIKE VOMIT.  I WILL SHOW YOU

3527
02:27:45,560 --> 02:27:47,960
DATA ABOUT THAT. IF YOU DON'T

3528
02:27:47,960 --> 02:27:52,400
TRUST ME. YEAH. FUNNY TO TRACKS

3529
02:27:52,400 --> 02:27:54,160
ARE IMPORTANT. WE WEREN'T ABLE

3530
02:27:54,160 --> 02:27:56,600
TO PRODUCE RESULTS IN THE

3531
02:27:56,600 --> 02:27:57,360
PREVIOUS STUDY COMPLETELY

3532
02:27:57,360 --> 02:27:59,440
DIFFERENT SAMPLE, WE WERE ABLE

3533
02:27:59,440 --> 02:28:01,880
TO THIS TIME HAVE 94% ACCURACY

3534
02:28:01,880 --> 02:28:07,520
IN DISCRIMINATING PEOPLE WITH

3535
02:28:07,520 --> 02:28:09,200
PAROSMIA. PEOPLE DON'T LIKE

3536
02:28:09,200 --> 02:28:12,880
VOMIT AS YOU CAN SEE FROM THE

3537
02:28:12,880 --> 02:28:14,920
BOTTOM, THE RATE VOMIT VERY NOT

3538
02:28:14,920 --> 02:28:17,920
PLEASANT. PEOPLE WITH PAROSMIA

3539
02:28:17,920 --> 02:28:21,160
HAVE A GENERAL DECREASE IN

3540
02:28:21,160 --> 02:28:23,600
HEDONIC RATINGS FOR ALL DOORS. 

3541
02:28:23,600 --> 02:28:25,760
WE INCLUDED A COFFEE ODOR WHICH

3542
02:28:25,760 --> 02:28:27,080
IS A KNOWN TRIGGER BUT LEARNED

3543
02:28:27,080 --> 02:28:29,520
LATER ON WE DIDN'T INCLUDE IN

3544
02:28:29,520 --> 02:28:32,920
THAT COST TO MAKE SURE SOME

3545
02:28:32,920 --> 02:28:34,360
TRIGGERS CHEMICALLY IDENTIFIED

3546
02:28:34,360 --> 02:28:35,960
LAYERS SO WE ARE NOW TRYING TO

3547
02:28:35,960 --> 02:28:38,600
SEE IF WE CAN HAVE A BETTER TO

3548
02:28:38,600 --> 02:28:42,360
DISCRIMINATE PEOPLE WITH

3549
02:28:42,360 --> 02:28:44,120
PAROSMIA.  THIS IS THE HEDONIC

3550
02:28:44,120 --> 02:28:47,720
SCORE AND THIS IS THE PAROSNIA

3551
02:28:47,720 --> 02:28:50,080
FREQUENCY. THE MORE FREQUENT OR

3552
02:28:50,080 --> 02:28:51,960
SEVERE THE LOWER THE HEDONIC

3553
02:28:51,960 --> 02:28:54,760
SCORE. SO WE CAN TRACK OVER TIME

3554
02:28:54,760 --> 02:28:57,480
WHAT HAPPENS TO A PERSON IN

3555
02:28:57,480 --> 02:28:59,000
TERMS OF HEDONIC RATINGS WITH

3556
02:28:59,000 --> 02:29:01,600
THE ODORS. SO REALLY WHAT WE GOT

3557
02:29:01,600 --> 02:29:04,240
THE AWARD FOR WAS TO DETERMINE

3558
02:29:04,240 --> 02:29:05,960
WHETHER WE CAN ACTUALLY DETECT

3559
02:29:05,960 --> 02:29:06,880
COVID-19 JUST BASED ON SMELL

3560
02:29:06,880 --> 02:29:12,200
TEST. SO WE PARTNERED WITH

3561
02:29:12,200 --> 02:29:16,400
W,XLER SCHOOL OF MEDICINE AND

3562
02:29:16,400 --> 02:29:18,640
GAVE SENTINEL TESTS, PEOPLE THAT

3563
02:29:18,640 --> 02:29:20,680
WERE TAKING THE TEST THAT WERE

3564
02:29:20,680 --> 02:29:21,920
SCHEDULED FOR TRAVEL OR FOR

3565
02:29:21,920 --> 02:29:25,680
MEDICAL PROCEDURESES. SO WE WERE

3566
02:29:25,680 --> 02:29:28,960
ABLE TO TEST THAT OUT TO 3,000

3567
02:29:28,960 --> 02:29:32,080
PARTICIPANTS WITH THIS METHOD.

3568
02:29:32,080 --> 02:29:33,680
BUT JUST WITH BECAUSE OF COURSE

3569
02:29:33,680 --> 02:29:38,120
WE LEARN TO HAVE THEM DURING

3570
02:29:38,120 --> 02:29:41,360
COVID THE PREVALENCE OF SMELL

3571
02:29:41,360 --> 02:29:43,400
LOSS HAS CHANGED FROM VARIANT TO

3572
02:29:43,400 --> 02:29:46,440
VARIANT. SO WE DO KNOW THAT IN

3573
02:29:46,440 --> 02:29:48,680
OMICRON IT IS LOWER AS COMPARED

3574
02:29:48,680 --> 02:29:51,320
TO ALPHA AND DELTA. TO GIVE YOU

3575
02:29:51,320 --> 02:29:54,720
A REFERENCE, IT IS 70% OF PEOPLE

3576
02:29:54,720 --> 02:29:57,160
WITH DELTA EXPERIENCED SMELL

3577
02:29:57,160 --> 02:30:01,920
LOSS WITH FOR TWO WEEKS OR SO.

3578
02:30:01,920 --> 02:30:04,640
BUT IN OMICRON DOWN TO 30% AND

3579
02:30:04,640 --> 02:30:07,720
NOW IT'S A LITTLE BIT LOWER. 

3580
02:30:07,720 --> 02:30:11,600
HERE THE GRAPH WHICH IS A LITTLE

3581
02:30:11,600 --> 02:30:12,840
COMPLICATED, HERE WE HAVE

3582
02:30:12,840 --> 02:30:18,600
BIWEEKLY RATE ON THE Y AXIS

3583
02:30:18,600 --> 02:30:21,680
FIRST -- SARS COV-2 POSITIVE

3584
02:30:21,680 --> 02:30:22,560
CASES SEPTEMBERNAL TAILS BECAUSE

3585
02:30:22,560 --> 02:30:24,120
THE IDEA IS IT IS A FUNCTIONAL

3586
02:30:24,120 --> 02:30:27,320
THE TAX IS NOW LOST THIS MAYBE A

3587
02:30:27,320 --> 02:30:28,600
SOURCE CODE FOR POSITIVEST THE.

3588
02:30:28,600 --> 02:30:34,280
WE ARE EXTRACTING THIS PATTERN

3589
02:30:34,280 --> 02:30:35,960
OVERESTIMATING HOW MANY PEOPLE

3590
02:30:35,960 --> 02:30:38,880
HAVE COVID, ALPHA AND DELTA BUT

3591
02:30:38,880 --> 02:30:42,560
WE START LOSING THAT TREND

3592
02:30:42,560 --> 02:30:43,200
COMPLETELY DURING OMICRON WHICH

3593
02:30:43,200 --> 02:30:45,000
IS THE PURPLE AREA. SO AS YOU

3594
02:30:45,000 --> 02:30:47,000
CAN SEE FROM THIS GRAPH WE ARE

3595
02:30:47,000 --> 02:30:51,440
VERY GOOD AT TELLING PEOPLE WITH

3596
02:30:51,440 --> 02:30:53,400
THIS TEST WE WHO DOES NOT HAVE

3597
02:30:53,400 --> 02:30:55,160
COVID BUT NOT GOOD SAYING WHO

3598
02:30:55,160 --> 02:30:58,800
HAS COVID BY LOOKING AT THE

3599
02:30:58,800 --> 02:31:00,320
SMELL TEST. WHAT WE ARE LEARNING

3600
02:31:00,320 --> 02:31:04,920
IS THAT OF ALL THE TASK

3601
02:31:04,920 --> 02:31:05,960
INTENSITY DETECTION DISCRIMINATE

3602
02:31:05,960 --> 02:31:08,520
IN IDENTIFICATION HEDONICS WHAT

3603
02:31:08,520 --> 02:31:12,400
MAKES THE DIFFERENCE IS THE ODOR

3604
02:31:12,400 --> 02:31:13,600
INTENSITY ASKING PEOPLE

3605
02:31:13,600 --> 02:31:15,600
SUBJECTIVE EXPERIENCE WHICH IS

3606
02:31:15,600 --> 02:31:17,640
USUALLY DISCARDED AS A METRIC

3607
02:31:17,640 --> 02:31:19,560
WAS PARTICULARLY HELPFUL IN

3608
02:31:19,560 --> 02:31:21,240
DISCRIMINATING COVID-19 POSITIVE

3609
02:31:21,240 --> 02:31:25,880
PEOPLE FROM COVID-19 NEGATIVE. I

3610
02:31:25,880 --> 02:31:28,880
WANT TO PRESENT NOW SERIES OF

3611
02:31:28,880 --> 02:31:30,720
EVIDENCE THAT GO BEYOND COVID-19

3612
02:31:30,720 --> 02:31:32,520
AND SHOW YOU I WANT TO HAVE

3613
02:31:32,520 --> 02:31:34,880
MONITORING OF SMELL TESTING THAT

3614
02:31:34,880 --> 02:31:38,400
IS NOT ONLY FOR DISEASE LIKE

3615
02:31:38,400 --> 02:31:40,000
COVID-19. WE BELIEVE AND I

3616
02:31:40,000 --> 02:31:41,800
BELIEVE FROM THE DATA THAT SMELL

3617
02:31:41,800 --> 02:31:45,600
AND TASTE ALSO ARE IGNORED

3618
02:31:45,600 --> 02:31:46,880
(INAUDIBLE) AND WHAT WE SEE IS

3619
02:31:46,880 --> 02:31:49,360
THAT SMELL LOSS IS ONE OF THE

3620
02:31:49,360 --> 02:31:49,960
STRONGEST PREDICTORS OF FIVE

3621
02:31:49,960 --> 02:31:52,040
YEAR AND TEN YEAR MORTALITY.

3622
02:31:52,040 --> 02:31:54,000
THESE ARE DATABASE ON NATIONAL

3623
02:31:54,000 --> 02:31:56,320
SURVEYS AND STUDIES THAT ARE

3624
02:31:56,320 --> 02:31:57,160
WELL REPRESENTED OF THE

3625
02:31:57,160 --> 02:32:02,720
POPULATION.  THIS IS -- THE

3626
02:32:02,720 --> 02:32:04,280
REASON ENOUGH THE START

3627
02:32:04,280 --> 02:32:06,160
MONITORING LARGE SCALE SMELL AND

3628
02:32:06,160 --> 02:32:07,800
TASTE. THEN WE LOOK AT THE DATA

3629
02:32:07,800 --> 02:32:12,760
FROM THE N HAYNES HAPPEN WHAT

3630
02:32:12,760 --> 02:32:18,000
HAPPENED.  NOT SURE WHAT

3631
02:32:18,000 --> 02:32:20,800
HAPPENED HERE BUT WE ARE BACK.

3632
02:32:20,800 --> 02:32:29,160
OKAY. LET ME SHARE AGAIN SO 20%

3633
02:32:29,160 --> 02:32:30,840
OF THE ADULTS WITH SMELL AND

3634
02:32:30,840 --> 02:32:34,720
TASTE DISORDERS DISCUSS THEIR

3635
02:32:34,720 --> 02:32:36,240
PROBLEM WITH A PROVIDER. START

3636
02:32:36,240 --> 02:32:38,280
THINKING THERE'S MILLIONS OF

3637
02:32:38,280 --> 02:32:39,760
PEOPLE WITH SMELL AND TASTE LOSS

3638
02:32:39,760 --> 02:32:41,360
THAT IS NOT THE BEST NUMBER WE

3639
02:32:41,360 --> 02:32:46,440
CAN HAVE HONESTLY. IF WE LOOK AT

3640
02:32:46,440 --> 02:32:48,000
WHAT WE COULD PREDICT BY LOOKING

3641
02:32:48,000 --> 02:32:51,560
-- BY INCORPORATING SMELL

3642
02:32:51,560 --> 02:32:53,920
EVALUATION IN MENTAL HEALTH

3643
02:32:53,920 --> 02:32:56,880
PERFORMANCE WE KNOW PEOPLE ARE

3644
02:32:56,880 --> 02:32:59,880
DEPRESSED OR ANXIOUS HAVE LOWER

3645
02:32:59,880 --> 02:33:02,400
OLFACTORY ABILITY, PEOPLE WITH

3646
02:33:02,400 --> 02:33:08,040
LOW OLFACTORY HAVE HIGHER RATES

3647
02:33:08,040 --> 02:33:10,280
OF DEPRESSION AND ANXIETY.

3648
02:33:10,280 --> 02:33:11,480
NUTRITIONAL AND METABOLIC HEALTH

3649
02:33:11,480 --> 02:33:12,960
IF WE LOSE OUR SENSE OF SMELL

3650
02:33:12,960 --> 02:33:14,320
THAT CHANGES 80% OF OUR

3651
02:33:14,320 --> 02:33:15,600
EXPERIENCE WITH FOOD. PRETTY

3652
02:33:15,600 --> 02:33:19,200
SIGNIFICANT. SO WE WILL START

3653
02:33:19,200 --> 02:33:21,200
EATING DIFFERENTLY. WE KNOW

3654
02:33:21,200 --> 02:33:23,040
PEOPLE WITH SMELL LOSS CONSUME

3655
02:33:23,040 --> 02:33:24,360
NOR SALT. TRYING TO COMPENSATE

3656
02:33:24,360 --> 02:33:25,800
FOR THE LACK OF FLAVOR THAT THEY

3657
02:33:25,800 --> 02:33:28,760
ARE EXPERIENCING.  WE KNOW THAT

3658
02:33:28,760 --> 02:33:30,200
THAT IS NOT THE BEST PRACTICE WE

3659
02:33:30,200 --> 02:33:33,080
CAN HAVE. WHEN IT COMES TO BRAIN

3660
02:33:33,080 --> 02:33:35,320
HEALTH ALL THE MAJOR DISORDERS

3661
02:33:35,320 --> 02:33:38,320
ARE ALZHEIMERS MULTIPLE

3662
02:33:38,320 --> 02:33:40,560
SCLEROSIS, EPILEPSY, THEY ALL

3663
02:33:40,560 --> 02:33:41,760
HAVE SMELL LOSS AS EARLY SYMPTOM

3664
02:33:41,760 --> 02:33:43,880
OR AS A SYMPTOM AMONG THEM. THAT

3665
02:33:43,880 --> 02:33:46,680
IS NOT THE U PRIMARY ONE EVEN IN

3666
02:33:46,680 --> 02:33:48,040
CERTAIN CASES LIKE PARKINSON

3667
02:33:48,040 --> 02:33:50,040
THIS IS THE SYMPTOM THAT WE USE

3668
02:33:50,040 --> 02:33:54,160
FOR DIFFERENTIAL DIAGNOSIS.  

3669
02:33:54,160 --> 02:33:58,560
BEFORE COVID 1 IN 8 EXPERIENCED

3670
02:33:58,560 --> 02:34:02,000
(INAUDIBLE) THIS DATA IS BASED

3671
02:34:02,000 --> 02:34:04,400
ON THE POPULATION. WE DIDN'T

3672
02:34:04,400 --> 02:34:05,800
HAVE A GOOD UNDERSTANDING OF

3673
02:34:05,800 --> 02:34:08,040
WHAT HAPPENS BELOW THAT AGE

3674
02:34:08,040 --> 02:34:11,600
RANGE, DEFINITELY NOT IN KIDS

3675
02:34:11,600 --> 02:34:14,040
LIKE I SAID BEFORE. COVID

3676
02:34:14,040 --> 02:34:15,160
PRODUCED 50 MILLION, PERHAPS

3677
02:34:15,160 --> 02:34:17,920
MORE OF PEOPLE THAT HAVE

3678
02:34:17,920 --> 02:34:19,640
EXPERIENCED A CERTAIN POINT IN

3679
02:34:19,640 --> 02:34:21,880
TIME SMELL LOSS AND 5 OR 10% OF

3680
02:34:21,880 --> 02:34:25,600
THAT STILL HAS THAT LOSS. WE NOW

3681
02:34:25,600 --> 02:34:26,960
DIRECT THEM WHEN IT COMES TO

3682
02:34:26,960 --> 02:34:27,640
HEALTHCARE WHICH TYPE OF SUPPORT

3683
02:34:27,640 --> 02:34:30,640
THEY CAN HAVE. IT IS TRUE AS

3684
02:34:30,640 --> 02:34:34,080
THIS IS ONE OF THE PROBLEMS THAT

3685
02:34:34,080 --> 02:34:35,800
IS OFTEN RAISED AS WELL, WE

3686
02:34:35,800 --> 02:34:37,680
DON'T HAVE TIME TO LOOK AT SMELL

3687
02:34:37,680 --> 02:34:39,840
AN TASTE JUST BECAUSE WE DON'T

3688
02:34:39,840 --> 02:34:42,920
HAVE A CURE YET. BUT I'M -- I

3689
02:34:42,920 --> 02:34:45,720
WOULD ARGUE WE WANT TO MONITOR,

3690
02:34:45,720 --> 02:34:47,080
WE DO KNOW THIS IS AN IMPORTANT

3691
02:34:47,080 --> 02:34:48,520
SYMPTOM AND WE WANT TO MAKE SURE

3692
02:34:48,520 --> 02:34:50,200
WE HAVE THIS INFORMATION

3693
02:34:50,200 --> 02:34:52,600
AVAILABLE FOR WHEN A CURE IS

3694
02:34:52,600 --> 02:34:55,280
AVAILABLE. SO WE WERE PLEASED TO

3695
02:34:55,280 --> 02:34:57,720
MOW THE STRATEGIC PLAN OF NIDCD

3696
02:34:57,720 --> 02:34:59,200
WANTS US TO IMAGINE A FUTURE

3697
02:34:59,200 --> 02:35:02,160
WHERE YOU USE SMELL TESTING IN

3698
02:35:02,160 --> 02:35:03,560
HEALTHCARE HEALTHCARE TO START

3699
02:35:03,560 --> 02:35:06,880
MONITORING DEMENTIA OR

3700
02:35:06,880 --> 02:35:07,800
NEURODEGENERATIVE DISEASE FOR

3701
02:35:07,800 --> 02:35:09,240
INSTANCE P AND WE ARE COMMITTED

3702
02:35:09,240 --> 02:35:11,040
TO CHAINS THIS NUMBER AND HELP

3703
02:35:11,040 --> 02:35:15,600
THE PEOPLE GOALS TO 26.2% WHERE

3704
02:35:15,600 --> 02:35:16,800
WE WANT MORE PEOPLE TO TALK TO

3705
02:35:16,800 --> 02:35:18,360
THEIR PROVIDERS ABOUT SMELL AND

3706
02:35:18,360 --> 02:35:20,320
TASTE SO WE WANT PROVIDERS THAT

3707
02:35:20,320 --> 02:35:23,880
DO KNOW WHAT TO RESPOND AND

3708
02:35:23,880 --> 02:35:25,920
WELCOME THEIR PATIENTS TALKING

3709
02:35:25,920 --> 02:35:30,240
ABOUT SMELL AND TASTE. WE KNOW

3710
02:35:30,240 --> 02:35:32,920
TALKING ABOUT IT IS NOT ENOUGH.

3711
02:35:32,920 --> 02:35:34,840
THIS SHOWS DATA FOR MORE THAN A

3712
02:35:34,840 --> 02:35:37,160
THOUSAND PEOPLE ACROSS 22

3713
02:35:37,160 --> 02:35:38,360
COUNTRIES BUT IF I SELECTED THE

3714
02:35:38,360 --> 02:35:40,400
U.S. OUT OF THIS GRAPH IT WILL

3715
02:35:40,400 --> 02:35:46,240
LOOK THE SAME. THE BARS INDICATE

3716
02:35:46,240 --> 02:35:47,640
IF PEOPLE WHICH SENSE WOULD THEY

3717
02:35:47,640 --> 02:35:48,800
GIVE UP IF THEY HAVE TO CHOOSE

3718
02:35:48,800 --> 02:35:53,480
ONE OF THEIR SENSES. 62% CHOOSE

3719
02:35:53,480 --> 02:35:56,080
TO GIVE UP THEIR SENSE OF SMELL.

3720
02:35:56,080 --> 02:35:57,840
OVER THE SENSE OF TASTE HEARING

3721
02:35:57,840 --> 02:35:59,880
AND VISION AND ALSO TOUCH

3722
02:35:59,880 --> 02:36:01,120
BECAUSE WE JUST REPLICATED THIS

3723
02:36:01,120 --> 02:36:03,760
DATA. SO THERE IS A FUNDAMENTAL

3724
02:36:03,760 --> 02:36:05,560
MISUNDERSTANDING OF WHAT THE

3725
02:36:05,560 --> 02:36:08,080
SENSE OF SMELL CONTRIBUTE TO OUR

3726
02:36:08,080 --> 02:36:09,960
LIVES. SO I STARTED THINKING

3727
02:36:09,960 --> 02:36:11,760
ABOUT SENSE OF SMELL MEASURING

3728
02:36:11,760 --> 02:36:13,080
THE SENSE OF SMELL LIKE BLOOD

3729
02:36:13,080 --> 02:36:18,080
PRESSURE MEASUREMENT. 'S AN GETS

3730
02:36:18,080 --> 02:36:20,640
AT EVERY WELLNESS VISIT.  IT CAN

3731
02:36:20,640 --> 02:36:23,040
TALK ABOUT SPECIFICALLY ABOUT

3732
02:36:23,040 --> 02:36:23,960
ONE DISEASE HYPERTENSION BUT

3733
02:36:23,960 --> 02:36:26,880
ALSO PROVIDE LIKE A GENERAL

3734
02:36:26,880 --> 02:36:29,600
CONCEPT FOR SEVERAL PEOPLE,

3735
02:36:29,600 --> 02:36:31,480
REGULATION ABOUT OTHER SYSTEMS. 

3736
02:36:31,480 --> 02:36:33,480
WE SHOULD START SWITCHING THE

3737
02:36:33,480 --> 02:36:37,280
THINKING ABOUT SMELL TESTING IN

3738
02:36:37,280 --> 02:36:38,400
THAT DIRECTION. ONE OF THE

3739
02:36:38,400 --> 02:36:39,880
PIECES OF THE PUZZLE, IT IS NOT

3740
02:36:39,880 --> 02:36:49,320
THE MAIN ONE NECESSARILY.  WE

3741
02:36:49,320 --> 02:36:50,520
CAN HAVE SCREENING TEST THAT

3742
02:36:50,520 --> 02:36:52,640
TELL THE FULL STORY ABOUT THE

3743
02:36:52,640 --> 02:36:54,240
FUNCTIONALITY OF A PERSON BUT

3744
02:36:54,240 --> 02:36:56,040
PROVIDE DATA POINT SCREENING

3745
02:36:56,040 --> 02:36:58,680
POINT.  IT IS QUICK, CHEAP,

3746
02:36:58,680 --> 02:37:00,000
REQUIRES LIMITED TRAINING TO

3747
02:37:00,000 --> 02:37:01,240
ADMINISTER BUT IT CAN REALLY

3748
02:37:01,240 --> 02:37:06,240
COVER THE WHOLE POPULATION. WE

3749
02:37:06,240 --> 02:37:07,560
WANT TO DO SO BECAUSE PATIENTS

3750
02:37:07,560 --> 02:37:12,360
ARE ASKING US TO (INAUDIBLE) SO

3751
02:37:12,360 --> 02:37:15,120
THE NORTH AMERICA ISSUES A

3752
02:37:15,120 --> 02:37:16,200
PETITION TO SUPPORT IDEA OF

3753
02:37:16,200 --> 02:37:17,960
MAKING SMELL AND TASTE TESTING

3754
02:37:17,960 --> 02:37:20,040
UNIVERSAL.  THEY WANT TO HAVE

3755
02:37:20,040 --> 02:37:21,400
THEIR EXPERIENCE SENSORY

3756
02:37:21,400 --> 02:37:23,240
EXPERIENCE VALIDATED, THEY WANT

3757
02:37:23,240 --> 02:37:25,000
TO RECEIVE NUTRITIONAL AND

3758
02:37:25,000 --> 02:37:26,040
PSYCHOLOGICAL COUNSELING AND

3759
02:37:26,040 --> 02:37:30,720
THEY WANT TO START AMASSING DATA

3760
02:37:30,720 --> 02:37:32,560
TO SHAPE PERSON OR PERSONS WITH

3761
02:37:32,560 --> 02:37:34,040
SMELL LOSS AND HOW TO

3762
02:37:34,040 --> 02:37:37,040
PARTICIPATE IN THE RESEARCH

3763
02:37:37,040 --> 02:37:39,640
EFFORTS TO IDENTIFY A CURE.

3764
02:37:39,640 --> 02:37:42,720
HEARING THIS VERY APPRECIATIVE

3765
02:37:42,720 --> 02:37:44,120
OF THE SUPPORT WE WILL HAVE A

3766
02:37:44,120 --> 02:37:46,160
CONFERENCE IN NOVEMBER, NOVEMBER

3767
02:37:46,160 --> 02:37:50,440
5 THROUGH 7 THAT IS CALLED THE

3768
02:37:50,440 --> 02:37:52,480
(INAUDIBLE) TESTING -- TOWARDS

3769
02:37:52,480 --> 02:37:54,600
UNIVERSAL CHEMO SENSORY TESTING

3770
02:37:54,600 --> 02:37:56,200
WHERE WE HAVE CLIENTS PAYER, ALL

3771
02:37:56,200 --> 02:37:58,320
TOGETHER TO FIGURE OUT OUT A

3772
02:37:58,320 --> 02:38:02,120
ROAD MAP TO FIGURE OUT SMELL AND

3773
02:38:02,120 --> 02:38:04,400
TASTE TESTING A UNIVERSAL

3774
02:38:04,400 --> 02:38:06,280
EXPERIENCE FOR ALL.  I HOPE I

3775
02:38:06,280 --> 02:38:08,440
CONVINCED YOU COVID EXPOSED GAPS

3776
02:38:08,440 --> 02:38:11,520
IN PREPAREDNESS FOR MEDICAL

3777
02:38:11,520 --> 02:38:12,680
CARE, DON'T HAVE SMELL TESTS TO

3778
02:38:12,680 --> 02:38:15,680
BE SAFE. I SHOWED YOU OPTIONS

3779
02:38:15,680 --> 02:38:16,680
FOR INNOVATIONS ABOUT SMELL

3780
02:38:16,680 --> 02:38:18,760
TESTING THAT COULD CHANGE THIS

3781
02:38:18,760 --> 02:38:21,360
TASK AND I REALLY HOPE DATA THAT

3782
02:38:21,360 --> 02:38:25,520
WE CURRENTLY HAVE LOBO ALSO DATA

3783
02:38:25,520 --> 02:38:26,840
WE COULD COLLECT BEFORE

3784
02:38:26,840 --> 02:38:28,280
MONITORING POPULATION LEVEL

3785
02:38:28,280 --> 02:38:29,800
SMELL FUNCTION COULD HELP US IN

3786
02:38:29,800 --> 02:38:33,640
VARIOUS AREAS OF HEALTHCARE. 

3787
02:38:33,640 --> 02:38:36,480
WITH THIS, I ACKNOWLEDGE MY

3788
02:38:36,480 --> 02:38:37,240
COLLABORATORS AND THANK YOU FOR

3789
02:38:37,240 --> 02:38:39,800
YOUR ATTENTION.

3790
02:38:39,800 --> 02:38:43,560
[APPLAUSE]

3791
02:38:43,560 --> 02:38:48,240
>>THANK YOU SO MUCH.
FABULOUS.

3792
02:38:48,240 --> 02:38:49,240
>>YOU HAVE A QUESTION?

3793
02:38:49,240 --> 02:38:51,360
>>THERE IS A LOT OF
PEOPLE THAT

3794
02:38:51,360 --> 02:38:52,720
WANT TO COMMENT ON IT.  I

3795
02:38:52,720 --> 02:38:55,520
THOUGHT THIS WAS SUCH A NICE

3796
02:38:55,520 --> 02:38:58,200
TALK AND IN RETROSPECT GOING

3797
02:38:58,200 --> 02:38:59,560
BACK FOR YEARS OF COURSE IT IS

3798
02:38:59,560 --> 02:39:02,560
THE OBVIOUS THING TO DO IS TO

3799
02:39:02,560 --> 02:39:05,000
GET SMELL TESTING AS ROUTINE AS

3800
02:39:05,000 --> 02:39:08,520
POSSIBLE BUT IT WASN'T CLEAR,

3801
02:39:08,520 --> 02:39:10,400
REALLY SO IMPRESSIVE TO SEE

3802
02:39:10,400 --> 02:39:13,400
GROUPS THAT CAN PUT TOGETHER SO

3803
02:39:13,400 --> 02:39:14,480
QUICKLY.

3804
02:39:14,480 --> 02:39:24,720
>>THANK YOU.

3805
02:39:31,560 --> 02:39:34,200
>>JOSH, YOU CAN STAND AT
THE

3806
02:39:34,200 --> 02:39:37,520
TABLE AND GET A MICROPHONE.

3807
02:39:37,520 --> 02:39:42,080
>>COULD I (INAUDIBLE)?

3808
02:39:42,080 --> 02:39:44,040
>>SURE. YEAH.

3809
02:39:44,040 --> 02:39:49,520
>>SO WITH THE DIFFERENT

3810
02:39:49,520 --> 02:39:52,640
VARIANTS VALENTINA, ARE THERE

3811
02:39:52,640 --> 02:39:55,800
OTHER QUALITIES OF CHANGES THAT

3812
02:39:55,800 --> 02:40:00,560
BECOME APPARENT? I KNOW THE

3813
02:40:00,560 --> 02:40:05,160
BOTTOM LINE YOU SEE IT THE SMELL

3814
02:40:05,160 --> 02:40:10,200
LOSS FREQUENTLY BUT PERHAPS THE

3815
02:40:10,200 --> 02:40:12,840
QUANTITATIVE ASPECT FOR PAROSNIA

3816
02:40:12,840 --> 02:40:15,720
DIFFERENT FOR ANY OTHER

3817
02:40:15,720 --> 02:40:16,040
DIFFERENCES?

3818
02:40:16,040 --> 02:40:17,880
>>IT DOESN'T SEEM AT
LEAST FROM

3819
02:40:17,880 --> 02:40:20,840
THE DATA WE HAVE RIGHT NOW THAT

3820
02:40:20,840 --> 02:40:23,040
THAT'S THE CASE. MY ARGUMENT IS

3821
02:40:23,040 --> 02:40:25,120
THAT I DON'T THINK WE ARE

3822
02:40:25,120 --> 02:40:27,120
MONITORING ENOUGH TO DETECT THE

3823
02:40:27,120 --> 02:40:28,680
DIFFERENCES. SO WE GO BACK TO

3824
02:40:28,680 --> 02:40:31,160
SQUARE ONE. WHEN WE TALK ABOUT

3825
02:40:31,160 --> 02:40:32,600
PREVALENCE FOR SMELL DISORDERS

3826
02:40:32,600 --> 02:40:34,560
WE TALK ABOUT PREVALENCE

3827
02:40:34,560 --> 02:40:35,760
COLLECTED A CERTAIN HOSPITAL

3828
02:40:35,760 --> 02:40:39,160
GENERALLY SPEAKING OR NATIONAL

3829
02:40:39,160 --> 02:40:41,640
-- THE BEST DATA WE HAVE IS THE

3830
02:40:41,640 --> 02:40:45,160
N HAYNES DATA FROM 2013 AND 14.

3831
02:40:45,160 --> 02:40:48,040
AND WE DON'T HAVE SMELL AND

3832
02:40:48,040 --> 02:40:51,520
TASTE TESTING ADDED TO SEE WHAT

3833
02:40:51,520 --> 02:40:53,320
THE DIFFERENCE HAS BEEN IN N

3834
02:40:53,320 --> 02:40:56,520
HAYNES. AT LEAST NOT YET. SO I

3835
02:40:56,520 --> 02:40:59,880
JUST THINK THAT WE HAVE A

3836
02:40:59,880 --> 02:41:02,560
LIMITED POWER OF EVALUATING WHAT

3837
02:41:02,560 --> 02:41:04,800
REALLY IS IN FACT SMELL LOSS OR

3838
02:41:04,800 --> 02:41:07,280
SMELL DYSFUNCTION IN GENERAL BUT

3839
02:41:07,280 --> 02:41:11,040
TO TWO BACK TO YOUR QUESTION WE

3840
02:41:11,040 --> 02:41:15,800
DON'T SEE OMICRON CHANGING THE

3841
02:41:15,800 --> 02:41:20,160
RATE OF PEROSMIA OR SEEMS LIKE

3842
02:41:20,160 --> 02:41:21,200
SMELL LOSS IS LESS FREQUENT.

3843
02:41:21,200 --> 02:41:23,120
>>THANK YOU. THIS IS
SOMETHING

3844
02:41:23,120 --> 02:41:27,440
THAT IS NEAR AND DEAR TO MY

3845
02:41:27,440 --> 02:41:27,640
HEART

3846
02:41:27,640 --> 02:41:28,480
>>COME CLOSER.

3847
02:41:28,480 --> 02:41:35,120
>>GOING TO GET THIS
RIGHT.  

3848
02:41:35,120 --> 02:41:35,920
HIGHLIGHTED COVID BROUGHT THE

3849
02:41:35,920 --> 02:41:38,120
WORLD ATTENTION TO OUR FIELD AND

3850
02:41:38,120 --> 02:41:43,840
I THINK AS YOU SHOW THIS IS

3851
02:41:43,840 --> 02:41:46,480
UNDERVALUED FOR MANY REASONS.

3852
02:41:46,480 --> 02:41:48,800
NOW THAT WE HAVE A LITTLE BIT OF

3853
02:41:48,800 --> 02:41:51,880
MOMENTUM CERTAINLY ATTENTION OF

3854
02:41:51,880 --> 02:41:53,640
THE THE WORLD WHAT BARRIERS DO

3855
02:41:53,640 --> 02:41:56,000
YOU SEE, WHAT CHALLENGES DO WE

3856
02:41:56,000 --> 02:41:59,080
FACE HELPING TO IMPACT CARE?

3857
02:41:59,080 --> 02:42:01,000
>>I REALLY THINK PEOPLE
DON'T

3858
02:42:01,000 --> 02:42:04,400
LIKE WHEN I SAY THIS BUT I STILL

3859
02:42:04,400 --> 02:42:07,160
THINK WE ARE AT THE AWARENESS

3860
02:42:07,160 --> 02:42:10,560
LEVEL. I SHOW THAT DATA ABOUT

3861
02:42:10,560 --> 02:42:12,480
WHICH SOME PEOPLE WOULD GIVE UP

3862
02:42:12,480 --> 02:42:13,760
AND WE HAVE DATA PRE-PANDEMIC AT

3863
02:42:13,760 --> 02:42:16,360
THE VERY BEGINNING OF THE

3864
02:42:16,360 --> 02:42:18,560
PANDEMIC AND A COUPLE OF YEARS

3865
02:42:18,560 --> 02:42:21,880
LATER. WE ONLY RAISE WARENESS BY

3866
02:42:21,880 --> 02:42:25,520
3%. SO THE AWARENESS WAS EXTR 

3867
02:42:25,520 --> 02:42:29,840
EXTREMELY HIGH BETWEEN MARCH

3868
02:42:29,840 --> 02:42:36,840
2020 AND PERHAPS MARCH 2021.

3869
02:42:36,840 --> 02:42:38,760
PEOPLE STARTED KNOWING THAT

3870
02:42:38,760 --> 02:42:41,000
SMELL LOSS WOULD BE A PROBLEM

3871
02:42:41,000 --> 02:42:43,200
BUT IT CAN BE A PROBLEM RELATED

3872
02:42:43,200 --> 02:42:47,160
TO COVID SO I THINK WE HAVE A

3873
02:42:47,160 --> 02:42:50,600
VERY FOCAL AWARENESS. THE WAY

3874
02:42:50,600 --> 02:42:51,840
THAT THIS WORKS THE WAY THE

3875
02:42:51,840 --> 02:42:53,760
INFORMATION IS PROCESSED IN THE

3876
02:42:53,760 --> 02:42:55,880
BRAIN, THE WAY SOCIALLY WE TALK

3877
02:42:55,880 --> 02:42:57,000
ABOUT THE SENSE OF SMELL WHICH

3878
02:42:57,000 --> 02:42:59,680
IS VERY LITTLE, DOES NOT ALLOW

3879
02:42:59,680 --> 02:43:03,160
US TO BE ABLE TO RELY ONLY ON

3880
02:43:03,160 --> 02:43:04,640
THE SELF-REPORT. THAT IS WHY I

3881
02:43:04,640 --> 02:43:05,960
THINK THE WAY FORWARD IS REALLY

3882
02:43:05,960 --> 02:43:09,640
HAVING A METRIC THAT CAN

3883
02:43:09,640 --> 02:43:12,480
HIGHLIGHT THOSE CHANGES FOR NOSE

3884
02:43:12,480 --> 02:43:15,040
NOT ABLE TO -- THOSE NOT ABLE TO

3885
02:43:15,040 --> 02:43:16,640
DETECT IT THEMSELVES AND CREATE

3886
02:43:16,640 --> 02:43:17,760
HISTORICAL AND LONGITUDINAL

3887
02:43:17,760 --> 02:43:21,160
CHANGES FOR PEOPLE SO THAT DATA

3888
02:43:21,160 --> 02:43:25,000
IS THERE LIKE PROVIDER CAN LOOK

3889
02:43:25,000 --> 02:43:26,320
TEN YEARS PRIOR WHAT WAS

3890
02:43:26,320 --> 02:43:29,960
HAPPENING. THIS IS NOT UNCOMMON.

3891
02:43:29,960 --> 02:43:32,720
THIS RETROSPECTIVELY FOR

3892
02:43:32,720 --> 02:43:34,600
PARKINSON'S VERY OFTEN. I GUESS

3893
02:43:34,600 --> 02:43:36,840
DIAGNOSE WITH PARKINSON AND TEN

3894
02:43:36,840 --> 02:43:38,600
YEARS PRIOR HAVING ISSUE WITH

3895
02:43:38,600 --> 02:43:40,800
SENSE OF SMELL. IT WOULD HAVE

3896
02:43:40,800 --> 02:43:42,760
BEEN NICE TO START KEEPING AN

3897
02:43:42,760 --> 02:43:45,840
EYE ON THINGS. THE MORE

3898
02:43:45,840 --> 02:43:47,080
THERAPEUTIC OPTIONS WILL BECOME

3899
02:43:47,080 --> 02:43:48,960
AVAILABLE WHERE WE CAN REALLY DO

3900
02:43:48,960 --> 02:43:51,520
SOMETHING IN THAT PERIOD OF

3901
02:43:51,520 --> 02:43:52,880
PROBLEM EARLY DIAGNOSIS I THINK

3902
02:43:52,880 --> 02:43:54,360
PEOPLE WILL START TO TUNE IN

3903
02:43:54,360 --> 02:43:56,360
MORE AND MORE. I WOULD LIKE FOR

3904
02:43:56,360 --> 02:43:58,400
US TO BE (INAUDIBLE) AND HAVE

3905
02:43:58,400 --> 02:44:01,720
ABILITY TO MEASURE SMELL. WE

3906
02:44:01,720 --> 02:44:04,040
DON'T NEED TO HAVE HALF HOUR

3907
02:44:04,040 --> 02:44:07,280
TYPE OF TESTING WITH JUST COUPLE

3908
02:44:07,280 --> 02:44:10,360
OF MINUTES, SENTINEL TASTE TWO

3909
02:44:10,360 --> 02:44:12,440
MINUTE IT IS FIRST TIME YOU SIGH

3910
02:44:12,440 --> 02:44:16,600
IT AND 40 SECONDS ON REPEAT AND

3911
02:44:16,600 --> 02:44:18,000
YOU CAN PLEAT AND

3912
02:44:18,000 --> 02:44:19,440
SELF-ADMINISTER SO NOT EVEN TAX

3913
02:44:19,440 --> 02:44:21,560
THE KIND OF PEOPLE HAVING TO

3914
02:44:21,560 --> 02:44:23,920
VISIT.  I'M TALKING SENTINEL

3915
02:44:23,920 --> 02:44:27,280
BECAUSE IT IS BEST AROMA AND

3916
02:44:27,280 --> 02:44:28,880
AROMATASE WOULD PROVIDE SPECIFIC

3917
02:44:28,880 --> 02:44:35,080
INFORMATION THAT IS OUT. ALMOST

3918
02:44:35,080 --> 02:44:36,160
AS FAST (INAUDIBLE). SO

3919
02:44:36,160 --> 02:44:40,480
AWARENESS IS OUR STEP ONE. 

3920
02:44:40,480 --> 02:44:43,200
>>THAT IS A BEAUTIFUL
TALK. .

3921
02:44:43,200 --> 02:44:47,680
THE QUESTION I HAD IS HAVE YOU

3922
02:44:47,680 --> 02:44:52,400
OR OTHER INVESTIGATORS LOOK AT

3923
02:44:52,400 --> 02:44:55,640
INTERACTIONS BETWEEN COVID PER

3924
02:44:55,640 --> 02:44:59,960
SE AND HOW THAT HAPPENED AT THAT

3925
02:44:59,960 --> 02:45:02,080
TIME, AUTOIMMUNE DISORDERS OR

3926
02:45:02,080 --> 02:45:02,880
THINGS LIKE THAT?

3927
02:45:02,880 --> 02:45:06,080
>>NOT THERE YET WITH
OLFACTION

3928
02:45:06,080 --> 02:45:07,200
AS A DRIVER OF THAT

3929
02:45:07,200 --> 02:45:08,000
INVESTIGATION BUT I ABSOLUTELY

3930
02:45:08,000 --> 02:45:10,600
TAKE YOUR POINT. WE DO KNOW

3931
02:45:10,600 --> 02:45:12,720
SMELL LOSS IS MANY, MANY

3932
02:45:12,720 --> 02:45:14,560
DIFFERENT DISORDERS AND I THINK

3933
02:45:14,560 --> 02:45:16,880
MY ANGLE TO THIS IS AGAIN LET'S

3934
02:45:16,880 --> 02:45:19,240
CREATE A DATABASE WHERE WE HAVE

3935
02:45:19,240 --> 02:45:21,680
OLFACTORY MEASURES EVEN AT THE

3936
02:45:21,680 --> 02:45:23,480
(INAUDIBLE) LEVEL MATCH IT WITH

3937
02:45:23,480 --> 02:45:26,160
ELECTRONIC MEDICAL RECORDS AND

3938
02:45:26,160 --> 02:45:28,240
THEN WE CAN SEE WHAT IS IMPACT

3939
02:45:28,240 --> 02:45:31,720
AND ABILITY OF SMELL LOSS TO

3940
02:45:31,720 --> 02:45:36,760
PREDICT AND HOW EARLY THIS --

3941
02:45:36,760 --> 02:45:37,680
WIDE RANGE (INAUDIBLE). THERE IS

3942
02:45:37,680 --> 02:45:39,240
WORK TO DO. WE HAVE THE ENERGY

3943
02:45:39,240 --> 02:45:42,160
TO DO IT. WE THINK DATABASE IS

3944
02:45:42,160 --> 02:45:45,080
AT LEAST IN OUR GROUP WE THINK

3945
02:45:45,080 --> 02:45:47,800
DATABASES ARE A WAY TO START

3946
02:45:47,800 --> 02:45:52,160
DOING THAT, CRITICAL MASS

3947
02:45:52,160 --> 02:45:52,560
INFORMATION.

3948
02:45:52,560 --> 02:45:57,920
>>YOU THINK THAT NEED TO
LOOK

3949
02:45:57,920 --> 02:46:04,560
(INAUDIBLE) ALSO INFORM YOU HOW

3950
02:46:04,560 --> 02:46:06,800
(INAUDIBLE) THE ENCODING SMELLS,

3951
02:46:06,800 --> 02:46:09,600
IS THERE OTHER SMELLS EASIER TO

3952
02:46:09,600 --> 02:46:10,000
LOCALIZE?

3953
02:46:10,000 --> 02:46:11,280
>>MANY TRIED TO IDENTIFY
WHAT

3954
02:46:11,280 --> 02:46:13,600
IS THE SMELL THAT HELPS DETECT

3955
02:46:13,600 --> 02:46:15,760
ALZHEIMER'S PARKINSON OR WHAT

3956
02:46:15,760 --> 02:46:19,560
NOT. IT DOESN'T SEEM WE ARE ABLE

3957
02:46:19,560 --> 02:46:22,000
TO FIND SMELLS AT THAT LEVEL

3958
02:46:22,000 --> 02:46:23,880
HONESTLY. SO IT IS MORE LIKE A

3959
02:46:23,880 --> 02:46:25,520
GLOBAL ABILITY TO PERCEIVE ODOR,

3960
02:46:25,520 --> 02:46:27,880
THE SENSE OF SMELL IS EXTREMELY

3961
02:46:27,880 --> 02:46:29,480
COMPLICATED. WE SEE MILLIONS OF

3962
02:46:29,480 --> 02:46:32,320
COLLEAGUES WITH RECEPTORS, WE

3963
02:46:32,320 --> 02:46:34,440
HAVE 400 PER SMELL, WE HAVE

3964
02:46:34,440 --> 02:46:37,320
SPECIFIC ANOSMIA, THE

3965
02:46:37,320 --> 02:46:39,160
DIMENSIONALITY OF OLFACTORY

3966
02:46:39,160 --> 02:46:40,760
SPACE IS LARGER THAN THE VISUAL

3967
02:46:40,760 --> 02:46:42,320
SPACE.  ON TOP OF THAT WE ARE

3968
02:46:42,320 --> 02:46:46,280
NOT ABLE TO MAP AT THIS POINT

3969
02:46:46,280 --> 02:46:47,800
THE DESCRIPTORS TO THE CHEMICAL

3970
02:46:47,800 --> 02:46:50,640
STRUCTURE TO THE ODOR. THERE IS

3971
02:46:50,640 --> 02:46:52,920
SOME BREAK THROUGH VERY RECENT

3972
02:46:52,920 --> 02:46:55,200
WHERE WE START TO CONNECT FOR

3973
02:46:55,200 --> 02:46:57,240
SINGLE ODORS AND NOT ODOR

3974
02:46:57,240 --> 02:46:58,560
MIXTURES WHICH IS MOSTLY WHAT WE

3975
02:46:58,560 --> 02:47:03,240
ARE SMELLING IN OUR DAILY LIFE. 

3976
02:47:03,240 --> 02:47:05,200
WITH (INAUDIBLE) CHEMICAL. THE

3977
02:47:05,200 --> 02:47:06,560
HIGH DIMENSIONALITY PROBLEM AT

3978
02:47:06,560 --> 02:47:08,680
THIS POINT. SO WE DON'T HAVE ONE

3979
02:47:08,680 --> 02:47:12,560
SPECIFIC ODOR THAT PREDICTS

3980
02:47:12,560 --> 02:47:15,360
THIS. BUT WE HAVE USED CERTAIN

3981
02:47:15,360 --> 02:47:17,240
VERY SIMILAR ODORS AS SHORT CUTS

3982
02:47:17,240 --> 02:47:18,240
TO HELP PEOPLE MONITORING THE

3983
02:47:18,240 --> 02:47:20,360
SENSE OF SMELL SO THE PEANUT

3984
02:47:20,360 --> 02:47:22,360
BUTTER TEST IS A FAMOUS ONE TO

3985
02:47:22,360 --> 02:47:25,720
START SEEING SOMEBODY LOSES

3986
02:47:25,720 --> 02:47:27,640
THEIR SENSE OF SMELL, REACH FOR

3987
02:47:27,640 --> 02:47:31,040
YOUR SPICE CABINET OR SMELL YOUR

3988
02:47:31,040 --> 02:47:35,680
PEANUT BUTTER. ORIGINALLY THAT

3989
02:47:35,680 --> 02:47:38,200
WAS ONE OF THE CONTEXT OF

3990
02:47:38,200 --> 02:47:39,080
ALZHEIMER'S DISEASE BUT CAN BE

3991
02:47:39,080 --> 02:47:40,520
APPLIED TO COVID AND MANY OTHER

3992
02:47:40,520 --> 02:47:40,760
THINGS.

3993
02:47:40,760 --> 02:47:47,160
>>CATHERINE BOUTON HAS
HER HAND

3994
02:47:47,160 --> 02:47:50,000
UP. THINK SHE WANT TO ASK A

3995
02:47:50,000 --> 02:47:50,600
QUESTION.

3996
02:47:50,600 --> 02:47:55,400
>>THE 23% WHO DID REPORT
SMELL

3997
02:47:55,400 --> 02:47:57,920
LOSS TO MEDICAL PROFESSIONAL,

3998
02:47:57,920 --> 02:47:59,480
WHAT KIND OF RESPONSE DID THEY

3999
02:47:59,480 --> 02:48:01,040
GET? MY FIELD IS HEARING LOSS

4000
02:48:01,040 --> 02:48:05,960
AND I KNOW THAT DOCTORS TEND TO

4001
02:48:05,960 --> 02:48:08,880
JUST IGNORE PRIMARY CARE DOCTORS

4002
02:48:08,880 --> 02:48:11,800
THEN TO SCREEN FOR THE MOST

4003
02:48:11,800 --> 02:48:13,720
PART. IS THIS LIKELY TO FALL

4004
02:48:13,720 --> 02:48:16,600
INTO THE SAME CATEGORY OR HOW

4005
02:48:16,600 --> 02:48:21,760
ARE YOU GOING ABOUT EDUCATING

4006
02:48:21,760 --> 02:48:22,520
CLINICIANS THE IMPORTANCE OF

4007
02:48:22,520 --> 02:48:25,480
THIS?

4008
02:48:25,480 --> 02:48:26,680
>>THANK YOU FOR THE
QUESTION

4009
02:48:26,680 --> 02:48:29,000
BECAUSE YOU ARE HITTING A VERY

4010
02:48:29,000 --> 02:48:31,360
IMPORTANT POINT. WE NOT ONLY

4011
02:48:31,360 --> 02:48:34,640
HAVE DATA FROM 6,000 PATIENTS

4012
02:48:34,640 --> 02:48:40,360
AND CAREGIVERS, FROM THE

4013
02:48:40,360 --> 02:48:42,160
COLLECTED WITH JEFFERSON AND THE

4014
02:48:42,160 --> 02:48:43,800
SMELL AND TASTE ASSOCIATION OF

4015
02:48:43,800 --> 02:48:46,280
NORTH AMERICA, WHAT WE SO E

4016
02:48:46,280 --> 02:48:49,520
MAJORITY OF PATIENTS AND

4017
02:48:49,520 --> 02:48:52,760
CAREGIVERS LIKE MEAT PROVIDERS,

4018
02:48:52,760 --> 02:48:54,120
THEY HEAR SENTENCES NOTHING TO

4019
02:48:54,120 --> 02:48:55,760
DO ABOUT IT, TO THINK ABOUT IT

4020
02:48:55,760 --> 02:48:58,400
IS OKAY. WE USUALLY LOOK AT THE

4021
02:48:58,400 --> 02:49:00,320
HEARING COMMUNITY AS AN EXAMPLE

4022
02:49:00,320 --> 02:49:02,000
OF WHAT THE OLFACTORY COMMUNITY

4023
02:49:02,000 --> 02:49:04,760
WOULD LIKE TO REACH FOR THE

4024
02:49:04,760 --> 02:49:08,040
PATIENT SO HEARING FROM YOU THAT

4025
02:49:08,040 --> 02:49:12,680
IS ALSO A PROBLEM IN THE HEARING

4026
02:49:12,680 --> 02:49:16,560
COMMUNITY IS KEEPS OUR HOPES A

4027
02:49:16,560 --> 02:49:18,440
LITTLE BIT LOW AT THE MOMENT BUT

4028
02:49:18,440 --> 02:49:20,240
MAJORITY OF PRIMARY HEALTHCARE

4029
02:49:20,240 --> 02:49:21,560
PROVIDERS ARE NOT TRAINED IN

4030
02:49:21,560 --> 02:49:22,720
DETECTING AND TALKING ABOUT

4031
02:49:22,720 --> 02:49:24,600
SMELL AND TASTE. THINK ABOUT THE

4032
02:49:24,600 --> 02:49:25,960
AMOUNT OF PAGES THAT WE SEE IN A

4033
02:49:25,960 --> 02:49:31,600
BOOK. IN ANY SPECIALTY. ASIDE

4034
02:49:31,600 --> 02:49:33,480
ENTs. BUT USUALLY THERE IS A

4035
02:49:33,480 --> 02:49:34,720
CHAPTER IN NEUROSCIENCE YOU HAVE

4036
02:49:34,720 --> 02:49:38,080
TWO CHAPTERS ON VISION, ONE ON

4037
02:49:38,080 --> 02:49:39,000
OLFACTION. TOUCH MAYBE HALF THEN

4038
02:49:39,000 --> 02:49:41,120
TWO PAGES OF SMELL AN TASTE AT

4039
02:49:41,120 --> 02:49:44,960
THE END. NOT ANY MORE, THANK YOU

4040
02:49:44,960 --> 02:49:46,280
NUROPA. WE ARE TRYING TO CHANGE

4041
02:49:46,280 --> 02:49:48,880
THIS. BUT THIS IS THE REALITY OF

4042
02:49:48,880 --> 02:49:53,160
THE TRAINING SO FAR. SO AND THE

4043
02:49:53,160 --> 02:49:54,520
FACT WE DON'T HAVE A CURE REALLY

4044
02:49:54,520 --> 02:49:55,720
MAKES IT DIFFICULT TO ATTRACT

4045
02:49:55,720 --> 02:49:59,920
THE ATTENTION OF HEALTHCARE

4046
02:49:59,920 --> 02:50:01,560
PROVIDERS BECAUSE YOU DON'T WANT

4047
02:50:01,560 --> 02:50:04,160
TO RAISE A PROBLEM YOU DO NOT

4048
02:50:04,160 --> 02:50:05,920
HAVE SOLUTION TO TO. I COMPLETEY

4049
02:50:05,920 --> 02:50:07,440
UNDERSTAND THE POINT. WE DO HAVE

4050
02:50:07,440 --> 02:50:10,200
SOMETHING THAT WE CAN DO THAT

4051
02:50:10,200 --> 02:50:11,600
THE PATIENTS TELL US THEY

4052
02:50:11,600 --> 02:50:13,640
APPRECIATE SO THEY WANT TO

4053
02:50:13,640 --> 02:50:15,320
RECEIVE VALIDATION, THEY WANT TO

4054
02:50:15,320 --> 02:50:17,400
BE TOLD THEY ARE NOT CRAZY WHICH

4055
02:50:17,400 --> 02:50:18,840
IS SOMETHING THAT HAS HAPPENED.

4056
02:50:18,840 --> 02:50:20,520
SO THE BASIC VALIDATION OF THE

4057
02:50:20,520 --> 02:50:23,880
EXPERIENCE I THINK IS EXTREMELY

4058
02:50:23,880 --> 02:50:25,880
IMPORTANT. THEN YOU HAVE MENTAL

4059
02:50:25,880 --> 02:50:27,800
HEALTH SUPPORT. NUTRITIONAL

4060
02:50:27,800 --> 02:50:29,320
COUNSELING. THAT COULD IMPROVE

4061
02:50:29,320 --> 02:50:30,960
THE QUALITY OF LIFE OF THESE

4062
02:50:30,960 --> 02:50:33,440
PEOPLE, WITHOUT CHANGING THEIR

4063
02:50:33,440 --> 02:50:35,760
ABILITY TO SELL AT THIS POINT.

4064
02:50:35,760 --> 02:50:37,920
>>BUT ALSO IT IS A GOOD

4065
02:50:37,920 --> 02:50:39,120
DIAGNOSTIC TOOL FROM WHAT YOU

4066
02:50:39,120 --> 02:50:42,120
SAID EARLIER.

4067
02:50:42,120 --> 02:50:46,320
>>YES. DIAGNOSTIC FOR
SMELL

4068
02:50:46,320 --> 02:50:47,440
LOSS, AT THIS POINT WE IMMEDIATE

4069
02:50:47,440 --> 02:50:49,040
MORE DATA TO MAKE IT DIAGNOSTICS

4070
02:50:49,040 --> 02:50:52,040
FOR MANY OTHER PATHOLOGISTS IN A

4071
02:50:52,040 --> 02:50:53,840
RELIABLE WAY. MY HOPE WOULD BE

4072
02:50:53,840 --> 02:50:56,240
LIKE IF WE HAD SMELL TESTING

4073
02:50:56,240 --> 02:50:58,480
INCLUDED IN A SERIES OF CLINICAL

4074
02:50:58,480 --> 02:51:00,120
TRIALS, WE COULD BE ABLE TO

4075
02:51:00,120 --> 02:51:04,440
IDENTIFY SUBGROUP OF PATIENTS

4076
02:51:04,440 --> 02:51:07,520
THAT MAY REQUIRE DIFFERENT TYPE

4077
02:51:07,520 --> 02:51:11,520
OF SUPPORT OR FOR WHOM CERTAIN

4078
02:51:11,520 --> 02:51:12,360
THERAPEUTIC AGENTS DON'T WORK.

4079
02:51:12,360 --> 02:51:15,800
IT IS JUST WE DON'T KNOW, WE ARE

4080
02:51:15,800 --> 02:51:18,920
NOT ABLE TO COLLECT DATA AT THAT

4081
02:51:18,920 --> 02:51:21,480
LEVEL. I THINK MY ARGUMENT IS

4082
02:51:21,480 --> 02:51:22,600
THAT IT IS LOW EFFORT AT THIS

4083
02:51:22,600 --> 02:51:24,160
POINT. WE HAVE THE TOOLS THAT

4084
02:51:24,160 --> 02:51:25,840
REQUIRE COUPLE OF MINUTES AND

4085
02:51:25,840 --> 02:51:27,520
THIS IS THE INFORMATION THAT

4086
02:51:27,520 --> 02:51:29,480
WHEN ACCUMULATED WILL ALLOW US

4087
02:51:29,480 --> 02:51:31,680
TO DETECT IN WHICH CASES YOU

4088
02:51:31,680 --> 02:51:33,440
WANT TO INVEST TIME IN LOOKING

4089
02:51:33,440 --> 02:51:37,280
AT OLFACTION. NUTRITION AND

4090
02:51:37,280 --> 02:51:38,360
MENTAL HEALTH ARE

4091
02:51:38,360 --> 02:51:40,400
NEURODEGENERATIVE DISORDERS ARE

4092
02:51:40,400 --> 02:51:42,160
PRETTY SOLID PLACES TO START

4093
02:51:42,160 --> 02:51:43,040
BASED ON THE EVIDENCE THAT WE

4094
02:51:43,040 --> 02:51:46,240
HAVE ALREADY.

4095
02:51:46,240 --> 02:51:47,200
>>BARBARA.

4096
02:51:47,200 --> 02:51:47,600
>>THANK YOU.

4097
02:51:47,600 --> 02:51:49,480
>>A QUICK COMMENT AND A

4098
02:51:49,480 --> 02:51:53,360
QUESTION. MY MOTHER IN THE

4099
02:51:53,360 --> 02:51:55,560
1980s AFTER A BAD COAL LOST

4100
02:51:55,560 --> 02:51:57,000
HER TASTE AND SMELL AND NEVER

4101
02:51:57,000 --> 02:51:59,240
REGAINED HER SMELL BUT HER TASTE

4102
02:51:59,240 --> 02:52:01,160
CAME BACK. IT REALLY AFFECTED

4103
02:52:01,160 --> 02:52:03,280
HER QUALITY OF LIFE AND SHE WAS

4104
02:52:03,280 --> 02:52:05,200
DISMISSED AND EVERYBODY DID SAY

4105
02:52:05,200 --> 02:52:09,600
SHE WAS CRAZY. THE PHYSICIAN

4106
02:52:09,600 --> 02:52:11,160
BASICALLY SAID LOOK YOU DON'T

4107
02:52:11,160 --> 02:52:13,360
HAVE CANCER, YOU DONE HAVE A

4108
02:52:13,360 --> 02:52:14,760
DISEASE. LIVE WIT. THAT OFTEN

4109
02:52:14,760 --> 02:52:15,680
HAPPENS WITH HEARING LOSS AS

4110
02:52:15,680 --> 02:52:19,560
WELL.  A QUESTION. ANY

4111
02:52:19,560 --> 02:52:22,120
CORRELATION WITH PREGNANCY? WE

4112
02:52:22,120 --> 02:52:25,800
KNOW THAT YOU HAVE SMELL THINGS

4113
02:52:25,800 --> 02:52:28,000
DIFFERENTLY, AVERSIONS TOWARD

4114
02:52:28,000 --> 02:52:29,480
FOOD YOU TASTE DIFFERENTLY, ANY

4115
02:52:29,480 --> 02:52:30,400
RESEARCH WITH THAT?

4116
02:52:30,400 --> 02:52:33,680
>>THERE IS SOME RESEARCH
AND

4117
02:52:33,680 --> 02:52:35,600
THERE IS A LOT OF ABILITY IN

4118
02:52:35,600 --> 02:52:37,600
THAT IN RELATIONSHIP BETWEEN

4119
02:52:37,600 --> 02:52:41,320
PREGNANCY AND SMELL. IT DOESN'T

4120
02:52:41,320 --> 02:52:42,880
SEEM A SITUATION THAT COMES

4121
02:52:42,880 --> 02:52:46,200
THROUGH EVERY SINGLE PREGNANT

4122
02:52:46,200 --> 02:52:47,520
WOMAN. BUT AGAIN THIS

4123
02:52:47,520 --> 02:52:50,320
CONVERSATION BRINGS UP THAT WE

4124
02:52:50,320 --> 02:52:52,600
HAVE A VERY TYPICAL IDEAS IN A

4125
02:52:52,600 --> 02:52:54,280
WAY IN WHICH THE SENSE OF SMELL

4126
02:52:54,280 --> 02:52:56,480
CONTRIBUTES TO OUR LIFE. IT IS

4127
02:52:56,480 --> 02:52:58,280
THE PREGNANCY, THE MEAL THAT I

4128
02:52:58,280 --> 02:53:00,000
HAVE IN FRONT OF US. THERE'S

4129
02:53:00,000 --> 02:53:01,480
MUCH MORE SUBTLE INFORMATION

4130
02:53:01,480 --> 02:53:03,960
WHEN YOU TALK TO PATIENTS THAT

4131
02:53:03,960 --> 02:53:06,840
LOST THAT CHANNEL OF

4132
02:53:06,840 --> 02:53:08,000
INFORMATION, THEY LOSE. I THINK

4133
02:53:08,000 --> 02:53:10,200
THE STRIKING ONE FOR ME IS TO

4134
02:53:10,200 --> 02:53:11,520
SEE ALL THE SOCIAL AND

4135
02:53:11,520 --> 02:53:13,520
RELATIONSHIP CONNECTIONS THAT

4136
02:53:13,520 --> 02:53:19,800
ARE LOST. SO THESE ARE

4137
02:53:19,800 --> 02:53:22,000
(INAUDIBLE) THERE IS A MEDICAL

4138
02:53:22,000 --> 02:53:25,360
LOSS SENSE OF SMELL BETWEEN THE

4139
02:53:25,360 --> 02:53:26,640
BIRTH OF TWO OF HE IS CHILDREN. 

4140
02:53:26,640 --> 02:53:29,200
HE CLAIMS THAT HE CLAIMS THAT

4141
02:53:29,200 --> 02:53:31,320
THE BONDING HE HASN'T SECOND ONE

4142
02:53:31,320 --> 02:53:32,600
IS MUCH DIFFERENT THAN THE

4143
02:53:32,600 --> 02:53:33,360
BONDING HE HAS WITH THE FIRST

4144
02:53:33,360 --> 02:53:36,960
ONE.  THIS IS AN ACT -- MAYBE A

4145
02:53:36,960 --> 02:53:39,680
PERSON THAT VALUES SENSE OF

4146
02:53:39,680 --> 02:53:42,520
SMELL, IT TELLS YOU WHAT ARE THE

4147
02:53:42,520 --> 02:53:45,960
RAMIFICATIONS THAT ARE NOT

4148
02:53:45,960 --> 02:53:47,680
USUALLY IN OUR SPEAR OF

4149
02:53:47,680 --> 02:53:48,920
CONVERSATION WHEN YOU THINK OF

4150
02:53:48,920 --> 02:53:51,320
SMELL. I'M SORRY WHAT HAPPENED

4151
02:53:51,320 --> 02:53:54,440
TO YOUR MOM, WE ARE TRYING TO

4152
02:53:54,440 --> 02:53:55,760
CHANGE AT LEAST -- WE CAN

4153
02:53:55,760 --> 02:53:58,120
PROVIDE VALIDATION THAT DOESN'T

4154
02:53:58,120 --> 02:53:59,760
COST ANYTHING MAKING PEOPLE NOT

4155
02:53:59,760 --> 02:54:01,000
FEELING CRAZY, IT IS SOMETHING

4156
02:54:01,000 --> 02:54:04,640
THAT WE CAN DO AS OF NOW. 

4157
02:54:04,640 --> 02:54:08,600
>>THANK YOU SO MUCH. THAT
WAS A

4158
02:54:08,600 --> 02:54:10,440
WONDERFUL PRESENTATION.

4159
02:54:10,440 --> 02:54:10,920
APPRECIATE IT.

4160
02:54:10,920 --> 02:54:13,960
[APPLAUSE]

4161
02:54:13,960 --> 02:54:17,920
>>ALL RIGHT. OUR LAST
ORDER OF

4162
02:54:17,920 --> 02:54:20,240
BUSINESS IS BITTERSWEET BECAUSE

4163
02:54:20,240 --> 02:54:22,600
WE ARE SAYING GOODBYE TO FOUR OF

4164
02:54:22,600 --> 02:54:24,360
OUR COUNCIL MEMBERS. IT OCCURRED

4165
02:54:24,360 --> 02:54:26,920
TO ME WE ALL STARTED AT THE SAME

4166
02:54:26,920 --> 02:54:30,640
TIME. SO I CAME TO NIDCD FOUR

4167
02:54:30,640 --> 02:54:33,040
YEARS AGO AND I THINK WE HAVE

4168
02:54:33,040 --> 02:54:35,520
BEEN THROUGH A LOT TOGETHER, WE

4169
02:54:35,520 --> 02:54:37,280
HAVE BEEN THROUGH COVID, THROUGH

4170
02:54:37,280 --> 02:54:40,360
A LOT OF CHANGES. I PERSONALLY

4171
02:54:40,360 --> 02:54:43,000
WANT TO SAY HOW GRATEFUL I AM

4172
02:54:43,000 --> 02:54:47,200
FOR ALL OF YOUR ADVICE, YOUR

4173
02:54:47,200 --> 02:54:50,600
WISDOM YOU HAVE SHARED WITH US.

4174
02:54:50,600 --> 02:54:52,640
HOW MUCH I HAVE ENJOYED HAVING

4175
02:54:52,640 --> 02:54:56,840
YOU ON COUNCIL. SO AS IS OUR

4176
02:54:56,840 --> 02:54:58,760
PRACTICE, I'M GOING TO GO AROUND

4177
02:54:58,760 --> 02:55:00,760
AND GIVE CERTIFICATES AND GIVE

4178
02:55:00,760 --> 02:55:02,000
YOU THE OPPORTUNITY IF YOU WOULD

4179
02:55:02,000 --> 02:55:05,320
LIKE TO SAY A FEW WORDS. SO WE

4180
02:55:05,320 --> 02:55:10,480
WILL GO IN THIS ORDER. DR. RUTH

4181
02:55:10,480 --> 02:55:19,640
ANN EATOCK, DR. BARRY KELLEY AND

4182
02:55:19,640 --> 02:55:23,160
DAN SANES AND BEN STROWBRIDGE.

4183
02:55:23,160 --> 02:55:24,880
SO I WANT TO THANK EVERYBODY

4184
02:55:24,880 --> 02:55:33,080
HERE FOR THE OPPORTUNITY. I WILL

4185
02:55:33,080 --> 02:55:36,680
OPEN THAT LATER TO -- THIS IS A

4186
02:55:36,680 --> 02:55:38,440
CAPSTONE MANY YEARS ASSOCIATION

4187
02:55:38,440 --> 02:55:42,320
WITH NIDCD. IN FACT MY CAREER

4188
02:55:42,320 --> 02:55:43,600
LAUNCHED ABOUT THE SAME TIME

4189
02:55:43,600 --> 02:55:46,400
WITH NIDCD DID. I DON'T KNOW IF

4190
02:55:46,400 --> 02:55:48,000
ANYBODY ELSE IS OLD ENOUGH TO BE

4191
02:55:48,000 --> 02:55:49,520
IN THAT POSITION. BUT I FEEL

4192
02:55:49,520 --> 02:55:53,440
ATTACHED TO IT AS A RESULT. YOU

4193
02:55:53,440 --> 02:55:55,520
MAY BE AWARE OF HOW EXCITED WE

4194
02:55:55,520 --> 02:56:01,320
ALL WERE AT THAT FOUNDATION. I

4195
02:56:01,320 --> 02:56:03,440
THINK IN MANY WAYS OUR HOPES

4196
02:56:03,440 --> 02:56:04,760
HAVE BEEN REALIZED. I WANT TO

4197
02:56:04,760 --> 02:56:08,520
GIVE A COUPLE OF BASIC RESEARCH

4198
02:56:08,520 --> 02:56:10,280
EXAMPLES, BECAUSE THAT IS WHERE

4199
02:56:10,280 --> 02:56:13,000
I LIVE. THEY WILL FOCUS ON

4200
02:56:13,000 --> 02:56:14,680
THINGS I KNOW AT LEAST LITTLE

4201
02:56:14,680 --> 02:56:16,480
BIT ABOUT FOR OBVIOUS REASONS. 

4202
02:56:16,480 --> 02:56:19,240
FIRST I WANT TO POINT OUT HOW

4203
02:56:19,240 --> 02:56:22,760
NIDCD RESEARCH SUPPORT HAS BEEN

4204
02:56:22,760 --> 02:56:25,640
INSTRUMENTAL IN THE EVOLUTION,

4205
02:56:25,640 --> 02:56:27,520
THE LONG WINDING ROAD TOWARDS

4206
02:56:27,520 --> 02:56:31,480
ALMOST UNDERSTANDING HOW SOUND

4207
02:56:31,480 --> 02:56:34,640
AND HEAD MOTION ARE DETECTED BY

4208
02:56:34,640 --> 02:56:37,120
SENSORY RECEPTORS IN THE INNER

4209
02:56:37,120 --> 02:56:39,760
EAR. WE HAVE GONE FROM REALLY

4210
02:56:39,760 --> 02:56:42,320
SIMPLE CARTOONS TO BEAUTIFUL

4211
02:56:42,320 --> 02:56:45,280
ATOMIC LEVEL IMAGES HOW

4212
02:56:45,280 --> 02:56:47,360
MOLECULES RESPOND TO THE IMPACT

4213
02:56:47,360 --> 02:56:49,240
OF THAT SPECIAL KIND OF

4214
02:56:49,240 --> 02:56:51,600
MECHANICAL ENERGY AND NIDCD HAS

4215
02:56:51,600 --> 02:56:55,760
BEEN SUPPORTING THESE

4216
02:56:55,760 --> 02:56:57,440
INVESTIGATORS ALL THE WAY ALONG.

4217
02:56:57,440 --> 02:57:00,000
THERE'S SIMILAR GREAT STORIES

4218
02:57:00,000 --> 02:57:02,040
FROM THE CHEMOSENSOR

4219
02:57:02,040 --> 02:57:04,960
(INAUDIBLE). NIDCD HAS ALSO

4220
02:57:04,960 --> 02:57:06,680
DIFFERENT EXAMPLE, BUT I THINK

4221
02:57:06,680 --> 02:57:10,000
IT IS KIND OF SPECIAL TO NIDCD

4222
02:57:10,000 --> 02:57:11,560
HOW GOOD IT IS. IT FOSTERS

4223
02:57:11,560 --> 02:57:15,200
REFINEMENT OF HEARING AID AND

4224
02:57:15,200 --> 02:57:17,400
COCHLEAR IMPLANT TECHNOLOGY,

4225
02:57:17,400 --> 02:57:19,880
ALONG THE WAY SORT OF REMIND YOU

4226
02:57:19,880 --> 02:57:22,000
OF A MODEL HOW YOU INTEGRATE

4227
02:57:22,000 --> 02:57:23,520
BASIC SCIENCE AND ENGINEERING

4228
02:57:23,520 --> 02:57:27,760
AND CLINICAL PRACTICE. WE WERE

4229
02:57:27,760 --> 02:57:30,160
DOING THAT, PEOPLE WERE DOING

4230
02:57:30,160 --> 02:57:31,200
THAT HERE BEFORE ANYBODY ELSE

4231
02:57:31,200 --> 02:57:34,960
WAS TALKING ABOUT IT. AND IN

4232
02:57:34,960 --> 02:57:38,040
FACT, FOR A LONG TIME GENERAL

4233
02:57:38,040 --> 02:57:39,200
PROSTHETIC WORLD DIDN'T SEEM TO

4234
02:57:39,200 --> 02:57:41,840
BE PAYING ATTENTION TO THIS

4235
02:57:41,840 --> 02:57:43,200
BEAUTIFUL NEUROPROSTHESIS THAT

4236
02:57:43,200 --> 02:57:45,320
WAS WORKING SO WELL IN THE INNER

4237
02:57:45,320 --> 02:57:46,760
EAR. ANYHOW, THERE ARE LOTS OF

4238
02:57:46,760 --> 02:57:48,760
THINGS THAT NIDCD HAS BEEN

4239
02:57:48,760 --> 02:57:51,680
REALLY IMPACTFUL IN DURING THE

4240
02:57:51,680 --> 02:57:54,880
COURSE OF MY CAREER. WE SAW

4241
02:57:54,880 --> 02:57:57,400
ANOTHER EXAMPLE OF THAT KIND OF

4242
02:57:57,400 --> 02:57:58,320
INTEGRATION IN THE BEAUTIFUL

4243
02:57:58,320 --> 02:58:03,080
TALK BY DR. PRIME PARMA. I WANT

4244
02:58:03,080 --> 02:58:05,080
TO MENTION NIDCD TRAINING

4245
02:58:05,080 --> 02:58:07,080
MISSION WHICH OF COURSE IS BIG

4246
02:58:07,080 --> 02:58:09,600
PART OF THE PORTFOLIO AND

4247
02:58:09,600 --> 02:58:11,400
INTEGRAL TO THE EVOLUTION OF

4248
02:58:11,400 --> 02:58:14,120
RESEARCH, I WILL GIVE AN EXAMPLE

4249
02:58:14,120 --> 02:58:15,960
FROM YESTERDAY SINCE I HAVE A

4250
02:58:15,960 --> 02:58:18,240
SHORT MEMORY P. YESTERDAY I WAS

4251
02:58:18,240 --> 02:58:21,760
REVIEWING THE CV OF A YOUNG

4252
02:58:21,760 --> 02:58:23,560
RESEARCHER JUNIOR FACULTY MEMBER

4253
02:58:23,560 --> 02:58:27,680
AND I REALIZED FROM THE LITTLE

4254
02:58:27,680 --> 02:58:31,200
MARCH OF ITEMS ON HER CV SHE'S

4255
02:58:31,200 --> 02:58:34,080
BEEN CONTINUOUSLY FUNDED BY

4256
02:58:34,080 --> 02:58:35,640
NIDCD SINCE BEGINNING WITH A

4257
02:58:35,640 --> 02:58:38,640
TRAINING GRANT SLOT AS A PRE-DOC

4258
02:58:38,640 --> 02:58:39,880
THROUGH PRE-DOCTORAL FELL HOE

4259
02:58:39,880 --> 02:58:44,800
SHIP, POST-DOCTORAL FELLOWSHIP,

4260
02:58:44,800 --> 02:58:47,760
99 TRANSDIVISIONAL AWARDS TO

4261
02:58:47,760 --> 02:58:49,960
FIRST JOB SHE CURRENTLY AND NOW

4262
02:58:49,960 --> 02:58:54,560
SHE HAS A BRAND NEW RO1. THAT IS

4263
02:58:54,560 --> 02:58:57,160
-- GIVES YOU THE IDEA WHAT

4264
02:58:57,160 --> 02:59:00,240
SUSTAINED INVESTMENT IS

4265
02:59:00,240 --> 02:59:01,920
NECESSARY TO GROW A HEARING

4266
02:59:01,920 --> 02:59:04,600
RESEARCHER BUT ALSO I CAN TELL

4267
02:59:04,600 --> 02:59:05,960
FROM ALL THE OTHER EXAMPLES I

4268
02:59:05,960 --> 02:59:10,360
CAN SEE THAT THEY ARE BEING AND

4269
02:59:10,360 --> 02:59:12,240
THAT GROUP WILL BE REWARDED MANY

4270
02:59:12,240 --> 02:59:15,280
TIMES OVER. THIS PARTICULAR

4271
02:59:15,280 --> 02:59:17,280
INDIVIDUAL, REALLY CREATIVE

4272
02:59:17,280 --> 02:59:20,080
RESEARCH AND ALSO ROLE MODEL

4273
02:59:20,080 --> 02:59:21,720
ALONG TO HELP THOSE DIMENSIONS

4274
02:59:21,720 --> 02:59:25,360
WORK UNDER-REPRESENTED GROUPS IN

4275
02:59:25,360 --> 02:59:27,600
RESEARCH. SO THE FUNDING IS

4276
02:59:27,600 --> 02:59:29,600
PREYLY IMPORTANT. OBVIOUSLY THE

4277
02:59:29,600 --> 02:59:31,760
MONEY MATTERS BUT I ALSO WANT TO

4278
02:59:31,760 --> 02:59:34,680
THANK EVERYBODY HERE FOR

4279
02:59:34,680 --> 02:59:36,720
COLLEGIALITY AND THE SUPPORT WE

4280
02:59:36,720 --> 02:59:39,920
ALL GET FROM NIDCD AT EVERY

4281
02:59:39,920 --> 02:59:44,800
LEVEL. I PERSONALLY RECEIVED

4282
02:59:44,800 --> 02:59:47,560
IMPACTFUL ADVICE AT CRITICAL

4283
02:59:47,560 --> 02:59:50,560
STAGES FROM AMAZING PROGRAM

4284
02:59:50,560 --> 02:59:54,760
OFFICERS WHO KNOW WHO THEY ARE.

4285
02:59:54,760 --> 02:59:56,960
WORKING IN SOMETIMES A VERY

4286
02:59:56,960 --> 03:00:00,640
DIFFICULT CONDITION LIKE SUCH AS

4287
03:00:00,640 --> 03:00:03,000
BUDGET CONSTRAINTS PANDEMICS AND

4288
03:00:03,000 --> 03:00:05,480
YET THEY ALWAYS SEEM PERFECTLY

4289
03:00:05,480 --> 03:00:08,160
HAPPY TO STOP EVERYTHING AND AND

4290
03:00:08,160 --> 03:00:09,480
TALK ABOUT WHATEVER ISSUE I'M

4291
03:00:09,480 --> 03:00:12,880
HAVINHAVING. THANK YOU TO THAT.N

4292
03:00:12,880 --> 03:00:17,560
FINALLY JUST TO WRAP UP. I

4293
03:00:17,560 --> 03:00:20,440
APPRECIATED A COUNCIL CARE AND

4294
03:00:20,440 --> 03:00:22,560
EFFORT YOU PUT INTO EVERY

4295
03:00:22,560 --> 03:00:25,640
MEETING I HAVE ATTENDED EVEN THE

4296
03:00:25,640 --> 03:00:30,480
ZOOM ONE TO SORT OF UNROLE THE

4297
03:00:30,480 --> 03:00:32,320
DEVELOPING PROCESS GROUP SO AS

4298
03:00:32,320 --> 03:00:33,680
MENTIONED THERE HAVE BEEN VERY

4299
03:00:33,680 --> 03:00:35,880
HAPPY TO BE ALONG FOR THIS

4300
03:00:35,880 --> 03:00:38,440
TRANSITITRANSITION. NEW INITIATE

4301
03:00:38,440 --> 03:00:43,640
STRATEGIC INITIATIVE. AND TO BE

4302
03:00:43,640 --> 03:00:47,280
BROUGHT ALONG CAREFULLY AS

4303
03:00:47,280 --> 03:00:49,840
COUNCIL. DESPITE THE PANDEMIC I

4304
03:00:49,840 --> 03:00:51,600
FEEL GRATEFUL TO BE AROUND FOR

4305
03:00:51,600 --> 03:00:52,400
SUCH AN INTERESTING TIME.

4306
03:00:52,400 --> 03:00:54,520
THANKS.

4307
03:00:54,520 --> 03:00:56,480
>>THANK YOU SO MUCH.

4308
03:00:56,480 --> 03:00:59,960
[APPLAUSE]

4309
03:00:59,960 --> 03:01:04,320
BARBARA KELLEY.

4310
03:01:04,320 --> 03:01:06,240
>>THANK YOU, DEB FOR MY

4311
03:01:06,240 --> 03:01:11,600
CERTIFICATE.  LIKE DR. EATOCK I

4312
03:01:11,600 --> 03:01:14,400
REMEMBER THE BEGINNING AND THE

4313
03:01:14,400 --> 03:01:16,600
ESTABLISHMENT OF NIDCD, OUR

4314
03:01:16,600 --> 03:01:18,360
ORGANIZATION HEARING LOSS

4315
03:01:18,360 --> 03:01:19,840
ASSOCIATION OF AMERICA ADVOCATED

4316
03:01:19,840 --> 03:01:21,760
FOR IT ALONG WITH MANY OF YOU

4317
03:01:21,760 --> 03:01:23,720
AND IT WAS A VERY EXCITING DAY.

4318
03:01:23,720 --> 03:01:26,640
I THINK IN 1989 WHEN THIS

4319
03:01:26,640 --> 03:01:27,920
INSTITUTE WAS ESTABLISHED. I

4320
03:01:27,920 --> 03:01:29,400
FELT SO HONORED TO BE ABLE TO BE

4321
03:01:29,400 --> 03:01:32,680
PART OF THIS ADVISORY COUNCIL TO

4322
03:01:32,680 --> 03:01:34,600
REPRESENT THE VOICE OF THE

4323
03:01:34,600 --> 03:01:37,040
COMMUNITY OF PEOPLE WITH HEARING

4324
03:01:37,040 --> 03:01:38,960
LOSS. AND THERE HAS BEEN SUCH

4325
03:01:38,960 --> 03:01:41,640
GREAT WORK DONE, GREAT RESEARCH.

4326
03:01:41,640 --> 03:01:44,360
BUT I LEARNED A LOT ABOUT THE

4327
03:01:44,360 --> 03:01:46,960
OTHER WORK OF THE INSTITUTES,

4328
03:01:46,960 --> 03:01:48,960
DELAYED LANGUAGE DEVELOPMENT IN

4329
03:01:48,960 --> 03:01:50,160
CHILDREN. I HAVE LIVED LONG

4330
03:01:50,160 --> 03:01:53,360
ENOUGH TO SEE THIS. WHEN AS LAY

4331
03:01:53,360 --> 03:01:55,560
PERSON I'M NOT A SCIENTIST, TO

4332
03:01:55,560 --> 03:01:58,840
SAY OH, THEY ARE BOYS.  THEY

4333
03:01:58,840 --> 03:02:00,760
WILL DEVELOP SOON ENOUGH BUT I

4334
03:02:00,760 --> 03:02:02,200
LEARNED HERE THAT ABOUT THE

4335
03:02:02,200 --> 03:02:04,000
RAMIFICATIONS OF THAT. I HAVE

4336
03:02:04,000 --> 03:02:08,600
LEARNED ABOUT TASTE AND SMELL

4337
03:02:08,600 --> 03:02:11,200
QUALITY OF LIFE, BALANCE ISSUES.

4338
03:02:11,200 --> 03:02:13,800
IN MY OWN LIFE HAVING FAMILY

4339
03:02:13,800 --> 03:02:16,000
MEMBERS WHO HAVE HAD STROKES WHO

4340
03:02:16,000 --> 03:02:16,920
CAN'T COMMUNICATE AFTER THE

4341
03:02:16,920 --> 03:02:20,520
STROKE AND SEEING THE QUALITY OF

4342
03:02:20,520 --> 03:02:25,200
LIFE OF THAT LIVED EXPERIENCE.

4343
03:02:25,200 --> 03:02:27,880
EVERYTHING THIS INSTITUTE PUTS

4344
03:02:27,880 --> 03:02:31,640
RESEARCH MONEY TO REALLY HAS AN

4345
03:02:31,640 --> 03:02:32,440
IMPACT ON THE INDIVIDUAL.

4346
03:02:32,440 --> 03:02:35,040
I WANT TO SAY I FEEL REALLY GOOD

4347
03:02:35,040 --> 03:02:38,240
ABOUT MY TAX DOLLARS AT WORK AND

4348
03:02:38,240 --> 03:02:40,440
SEEING EARLY STAGE INVESTIGATORS

4349
03:02:40,440 --> 03:02:43,520
WITH NEW IDEAS DOING RESEARCH AS

4350
03:02:43,520 --> 03:02:46,080
WELL AS SEASONED RESEARCHERS

4351
03:02:46,080 --> 03:02:48,720
DOING RESEARCH IN ALL THESE

4352
03:02:48,720 --> 03:02:50,840
AREAS AND IMPACT INDIVIDUAL AND

4353
03:02:50,840 --> 03:02:52,440
I WANT TO SAY THANK YOU THE

4354
03:02:52,440 --> 03:02:54,440
COUNCIL STAFF IS WONDERFUL AND

4355
03:02:54,440 --> 03:02:55,760
MY COLLEAGUES ON THE COUNCIL AS

4356
03:02:55,760 --> 03:02:57,360
WELL.  IT'S BEEN A TRUE HONOR.

4357
03:02:57,360 --> 03:02:58,560
THANK YOU.

4358
03:02:58,560 --> 03:03:02,960
[APPLAUSE]

4359
03:03:02,960 --> 03:03:09,800
>>DR. DAN SANES.

4360
03:03:09,800 --> 03:03:14,280
>>I THINK I'LL LARGELY
LET RUTH

4361
03:03:14,280 --> 03:03:16,480
ANN AND BARBARA'S ELOQUENT WORDS

4362
03:03:16,480 --> 03:03:17,960
SPEAK FOR ME TOO. I WANT STAFF

4363
03:03:17,960 --> 03:03:20,520
ALL PROGRAM STAFF TO KNOW HOW

4364
03:03:20,520 --> 03:03:22,920
WELL YOU ARE THOUGHT OF BY THE

4365
03:03:22,920 --> 03:03:23,520
COMMUNITY AND HOW PROUD WE ARE

4366
03:03:23,520 --> 03:03:24,960
OF YOU. IT IS AN UNUSUAL

4367
03:03:24,960 --> 03:03:28,200
CULTURE. I THINK THAT NIH AND

4368
03:03:28,200 --> 03:03:32,680
ALWAYS HAS BEEN, THERE'S REALLY

4369
03:03:32,680 --> 03:03:36,320
GREAT CONTINUITY. SO FROM THE

4370
03:03:36,320 --> 03:03:38,200
COMMUNITY AT LARGE, I WILL

4371
03:03:38,200 --> 03:03:40,080
CONVEY MY THANKS, THANKS FOR

4372
03:03:40,080 --> 03:03:41,600
INCLUDING ME IN THE PROCESS. I

4373
03:03:41,600 --> 03:03:43,640
FEEL LIKE ONE OF THE COOL THINGS

4374
03:03:43,640 --> 03:03:46,640
ABOUT BEING A SCIENTIST IS THEY

4375
03:03:46,640 --> 03:03:48,400
ALSO AS A TUNE. I LEARNED ABOUT

4376
03:03:48,400 --> 03:03:51,520
THE PROCESS AND BEING HERE. AND

4377
03:03:51,520 --> 03:03:52,280
THANKS VERY MUCH. 

4378
03:03:52,280 --> 03:03:55,480
>>THANK YOU, DAN.

4379
03:03:55,480 --> 03:03:55,760
[APPLAUSE]

4380
03:03:55,760 --> 03:03:58,560
>>DR. STROWBRIDGE. 

4381
03:03:58,560 --> 03:04:00,680
>>I'M THE LAST PERSON
STANDING

4382
03:04:00,680 --> 03:04:03,880
BETWEEN YOU AND THE RECEPTION,

4383
03:04:03,880 --> 03:04:07,520
WHATEVER. SO I WILL BE EVEN

4384
03:04:07,520 --> 03:04:08,640
BRIEFER. IT HAS BEEN WONDERFUL

4385
03:04:08,640 --> 03:04:13,280
TO BE HERE. I'M APPRECIATIVE OF

4386
03:04:13,280 --> 03:04:16,360
THE OPPORTUNITY HERE. FROM THE

4387
03:04:16,360 --> 03:04:19,120
GRANT AWARDEE SIDE, PAPERWORK WE

4388
03:04:19,120 --> 03:04:21,560
HAVE PAPERWORK BACK. WE ARE

4389
03:04:21,560 --> 03:04:24,800
LUCKY WE GOT NO GRANT AWARD

4390
03:04:24,800 --> 03:04:26,480
PAPER BACK AND IT'S NICE TO GET

4391
03:04:26,480 --> 03:04:29,360
TO PUT FACES OF PEOPLE TO THE

4392
03:04:29,360 --> 03:04:33,000
PROCESS. BOTH PEOPLE RUNNING THE

4393
03:04:33,000 --> 03:04:34,000
INSTITUTE, AND THE PROGRAM SENOR

4394
03:04:34,000 --> 03:04:36,440
TO GET TO KNOW SOME OF THEM,

4395
03:04:36,440 --> 03:04:41,720
IT'S ET BEEN WONDERFUL.

4396
03:04:41,720 --> 03:04:42,640
OLFACTION WHETHER INSTITUTES

4397
03:04:42,640 --> 03:04:46,240
STARTED WAS NOT THE SEXY SENSE

4398
03:04:46,240 --> 03:04:53,080
THAT IT IS NOW.  AND I THINK IT

4399
03:04:53,080 --> 03:04:55,280
IS WONDERFUL THE NIH AND

4400
03:04:55,280 --> 03:04:56,240
INSTITUTE WERE SUPPORTIVE OF

4401
03:04:56,240 --> 03:04:58,120
OLFACTION BACK THEN AND NOW

4402
03:04:58,120 --> 03:05:00,360
REAPING THE REWARD, NOBEL PRIZE

4403
03:05:00,360 --> 03:05:02,520
FEW YEARS AGO, MORE STUFF

4404
03:05:02,520 --> 03:05:06,160
HAPPENING. I THINK THE COMMUNITY

4405
03:05:06,160 --> 03:05:08,080
HEARING OLFACTION IS HAPPY WITH

4406
03:05:08,080 --> 03:05:10,240
WHAT YOU ARE DOING, WITH THE

4407
03:05:10,240 --> 03:05:12,280
INSTITUTE. I THINK GOING FORWARD

4408
03:05:12,280 --> 03:05:15,440
THE THING THAT ALWAYS IS SORT OF

4409
03:05:15,440 --> 03:05:16,840
UNUSUAL IN THE -- THINKING ANT

4410
03:05:16,840 --> 03:05:18,440
THESE MEETINGS IS INTERSECTION

4411
03:05:18,440 --> 03:05:24,480
FROM A LOT OF AREAS. LANGUAGE,

4412
03:05:24,480 --> 03:05:26,280
HEARING, CHEMICAL SENSES. I

4413
03:05:26,280 --> 03:05:30,880
THINK MORE AND MORE GOING TO BE

4414
03:05:30,880 --> 03:05:32,200
INTERACTION BETWEEN THOSE SENSES

4415
03:05:32,200 --> 03:05:33,520
AND THOSE AREAS. THE PEOPLE

4416
03:05:33,520 --> 03:05:35,760
COMING ON ARE ALSO GOING TO BE

4417
03:05:35,760 --> 03:05:37,200
PUSHING, LOOKING AT

4418
03:05:37,200 --> 03:05:38,320
MULTI-DISCIPLINE AND

4419
03:05:38,320 --> 03:05:40,200
MULTI-SENSORY ASPECTS TO THAT. I

4420
03:05:40,200 --> 03:05:42,800
THINK THAT IS SOMETHING THAT IS

4421
03:05:42,800 --> 03:05:44,400
GOING TO BE ONES TO WATCH IN THE

4422
03:05:44,400 --> 03:05:46,400
FUTURE. SO THANKS VERY MUCH.

4423
03:05:46,400 --> 03:05:48,240
[APPLAUSE]

4424
03:05:48,240 --> 03:05:49,360
>>THANK YOU ALL. I HOPE
YOU

4425
03:05:49,360 --> 03:05:50,720
HAVE A GREAT EVENING. SEE YOU

4426
03:05:50,720 --> 03:06:02,040
TOMORROW MORNING.