WELCOME TO THE CLINICAL CENTER GRAND ROUNDS,
A WEEKLY SERIES OF EDUCATIONAL LECTURES FOR PHYSICIANS AND
HEALTH CARE PROFESSIONALS BROADCAST FROM THE CLINICAL
CENTER AT THE NATIONAL INSTITUTES OF HEALTH IN
BETHESDA, MD.
THE NIH CLINICAL CENTER IS THE WORLD'S LARGEST HOSPITAL TOTALLY
DEDICATED TO INVESTIGATIONAL RESEARCH AND LEADS THE GLOBAL
EFFORT IN TRAINING TODAY'S INVESTIGATORS AND DISCOVERING
TOMORROW'S CURES.
LEARN MORE BY VISITING US ONLINE AT HTTP://CLINICALCENTER.NIH.GOV
GOOD AFTERNOON AND WELCOME TO
TODAY CLINICAL CENTER GRAND
GROUNDS THE CME CODE IS 50560
AND TEXT IT TO THE CODE ON THE
SLIDE TO RECEIVE CREDIT.
SCAN THE QR CODE SHOWN ON THE
CME SLIDE.
FOR THOSE APPLYING FOR CME,
YOU'LL RECEIVE A FEEDBACK SURVEY
LINK VIA E-MAIL.
THE SURVEY WILL PROVIDE US WITH
IMPORTANT FEEDBACK ABOUT THE
PRESENTATION AND SUBMIT
SUGGESTIONS FOR FUTURE GRAND
ROUNDS TOPICS.
FOLLOWING THE PRESENTATION
QUESTIONS WILL BE TAKEN FROM THE
MICROPHONES IN THE AISLES.
AND VIDEOCAST VIEWERS MAY SUBMIT
QUESTIONS ANY TIME BY CLICKING
LIVE FEEDBACK BUTTON ON THE
VIDEOCAST WEBSITE.
QUESTIONS WILL BE ANSWERED AS
TIME PERMITS AT THE CONCLUSION
OF THE PRESENTATION.
TODAY WE ARE HONORED TO HOST
DR. CATHERINE GORDON THE
CLINICAL DIRECTOR AND SENIOR
INVESTIGATOR IN THE DIVISION OF
INTRAMURAL RESEARCH AT THE
EUNICE KENNEDY SHRIVER NATIONAL
INSTITUTE OF CHILD HEALTH AND
HUMAN DEVELOPMENT.
SHE RECEIVE HER BACHELOR'S FROM
NORTH CAROLINA STATE UNIVERSITY
AND HER MEDICAL DEGREE FROM THE
UNIVERSITY OF NORTH CAROLINA AT
CHAPEL HILL AND COMPLETED HER
FELLOWSHIP IN CAN ADOLESCENT
MEDICINE BOSTON HOSPITAL AND
SUBSEQUENTLY JOINED THE FACULTY
AT HARVARD RISING TO ASSOCIATE
PROFESSOR OF PEDIATRICS BEFORE
BEING APPOINTED TO PROFESSOR OF
PEDIATRICS AT THE MEDICAL SCHOOL
OF BROWN UNIVERSITY THEN THE
UNIVERSITY OF CINCINNATI,
HARVARD AND FINALLY THE BAYLOR
COLLEGE OF MEDICINE BEFORE
JOINING NICHD AS THE CLINICAL
DIRECTOR IN SEPTEMBER 2023.
SHE'S BOARD CERTIFIED IN
PEDIATRIC ENCRINOLOGY AND
ADOLESCENT MEDICINE AND HAS
WORKED IN SCIENTIFIC MENTORING
AND DIRECTED BONE HEALTH
PROGRAMS AND CLINICAL RESEARCH
CENTERS, CLINICAL DIVISIONS AND
PEDIATRICS DEPARTMENT.
SHE PROVIDED CLINICAL CARE TO
CHILDREN AND ADOLESCENTS AND IS
AN ADOLESCENT MEDICINE
SPECIALIST AND RESEARCH ENJOYED
SUPPORT FROM THE NIH, DEPARTMENT
OF DEFENSE AND HER RESEARCH
FOCUSES ON THE MODIFIABLE FACTOR
DURING ADOLESCENT THAT INFLUENCE
BONE DENSE ITY AND OTHER ASPECT
OF HEALTH AND OPTIMIZING THE
TRANSITION OF HEALTH CARE FOR
YOUNG ADULTS.
HER GROUP STUDIES DISEASE MODELS
FOR ANOREXIA NERVOSA AND BONE
INEFFICIENCY AND ENDOMETRIOSIS
AND LOOKS AT PEDIATRIC CHRONIC
DISEASE GROUP AND HOW
MEDICATIONS MAY AFFECT BONE
HEALTH IN CHILDREN AND
ADOLESCENTS.
SHE RECEIVED AN AWARD FOR
OUTSTANDING MEDICINE AND
AUTHORED OVER 200 MAN YU
AUTHORED OVER 200 MAN SCRIPTS
AND BOOK CHAPTERS AND HAS BEEN
AN EDITOR OF NUMEROUS BOARD
PANELS AND SERVED ON THE
ADOLESCENT AND YOUNG ADULT
HEALTH CARE BOARD AND THE TITLE
OF HER PRESENTATION IS
ADOLESCENT BONE HEALTH.
JOIN ME IN WELCOMING OUR
SPEAKER, DR. GORDON.
>> THANK YOU, TOM, FOR THE
SPECIAL INTRODUCTION AND THANK
YOU FOR COMING THOSE HERE AND
ALSO ONLINE WITH US.
OVER THE NEXT 45 MINUTES OR SO
AND I'LL LEAVE TIME FOR
QUESTIONS BECAUSE I WANT THIS TO
BE AN INTERACTIVE DISCUSSION AND
THINK OF BONE DENSITY AND BODY
COMPOSITION IN CHILDREN AND
ADOLESCENTS GROWING AND THINK
ABOUT THREE DIAGNOSES AND
TREATMENTS THAT CLEARLY HAVE AN
AFFECT ON BONE HEALTH.
FIRST ANOREXIA NERVOSA AND LEADS
AND PUBERTAL BLOCKADE IN
TRANSGENDER YOUTH AND CAN HELP
PREMATURE CHILDREN AND PREMATURE
OVARIAN INSUFFICIENCY.
I'M LEAVE YOU WITH PROVOCATIVE
NEW RESEARCH WITH SKIN TONE AND
PIGMENTATION AND BONE HEALTH.
SO AS I'M SPEAKING REMEMBER I
REALIZE THERE ARE PEOPLE AT NIH
THAT HAVE MANY BACKGROUNDS AND
SKILL SETS SO I'M TALKING TODAY
THROUGH THE LENS OF A PEDIATRIC
ENDOCRINOLOGIST AND ADOLESCENT
HEALTH SPECIALIST.
SO I ALWAYS LIKE TO START WITH
THE SLIDE ADOLESCENCE IS A
CRITICAL TIME FOR BONE HEALTH.
THIS IS BONE MASS AND THE Y AXIS
IN AGE IN YEARS AND SEE THE
SLOPE OF THE LINE IS VERY STEEP
BETWEEN 10 AND 20 THE ADOLESCENT
YOUNG ADULT PERIOD AT LEAST HALF
THE SKELETON SHOULD BE LAID DOWN
DURING THAT PERIOD AND THIS
MIRRORS THE GROWTH CURVES THAT
WE USE AS PEDIATRIC
ENDOCRINOLOGIST.
CHILDREN SHOULD BE GROWING,
DEVELOPING AND ADOLESCENTS ARE
REACHING THEIR HIGHEST BONE
DENSITY OF THE PEAK BONE MASS
AROUND THE AGE OF 20 AND
UNFORTUNATELY FOR BOTH GROUPS
ALL OF US ARE GOING TO LOSE BONE
EVENTUALLY SO I'M OFTEN TALKING
TO YOUNG PEOPLE ABOUT THE BONE
BANK ABOUT GETTING AS MUCH AS
BONE IN YOUR BANK BY EATING WELL
AND EXERCISING AND BY MANAGING
THE CHRONIC HEALTH CONDITION
THAT MAY BE PUTTING THEM AT
RISK.
I'VE HAD A WONDERFUL OPPORTUNITY
COMING OUT OF MY FELLOWSHIP AT
BOSTON CHILDREN'S TO FOUND THE
BONE HEALTH PROGRAM THERE MANY
YEARS AGO.
WHEN I WAS TRAINING OSTEOPOROSIS
WAS A CONSIDERATION OF FOCUS OF
ADULT PROVIDERS.
OB-GYN AND INTERNAL MEDICINE
SPECIALISTS AND I'VE BEEN ON A
MISSION TO RAISE AWARENESS OF
THE CHILDHOOD AND ADOLESCENCE
YEAR AS PREVENTION FOR HEALTH
ISSUES AND A TIME TO OPTIMIZE
PEAK BONE MASS WE JUST TALKED
ABOUT.
OVER THE COURSE OVER THE TALK
WE'LL TALK ABOUT THE TOOLS THAT
WE'VE BEEN PIONEERING AND IN
PARTICULAR TRYING TO GET AWAY
INTEREST INVASIVE BONE BIOPSIES.
THAT USED TO BE THE WAY WHEN I
WAS IN MEDICAL SCHOOL WHERE WE
ASSESSED THE SKELETON AND WHAT
CAN WE DO NONINVASIVELY BECAUSE
CHILDREN WON'T COME BACK IF WE
DO SOMETHING INVASIVE.
THESE ARE MODELS AROUND IT'S A
BUSY SLIDE OF AT RISK CHILDREN
AND ADOLESCENTS.
IN THE ACADEMIC CENTERS AND
PRACTICES AND AT THE CLINICAL
CENTER, CHILDREN AND ADOLESCENTS
WE MAY SEE THE BOLDED DIAGNOSES
ARE THOSE THAT TOM MENTIONED.
SOME I HAVE STUDIED, MY RESEARCH
GROUP HAS FOCUSSED ON AND TODAY
AS I MENTIONED WE'RE GOING TO
THINK ABOUT RESEARCH OF EATING
DISORDERS, PUBERTAL BLOCKADE.
I SAW MANY PATIENTS WITH
ANOREXIA AND AMENORRHEA AND GOT
INTERESTED IN THE MENSTRUAL
COMPONENT.
THERE USED TO BE WHAT WAS CALLED
THE FEMALE ATHLETE TRIAD WHICH
MIGRATED TO A NEW TERMINOLOGY
ENERGY DEFICIENCY IN SPORT AND
IMPORTANT TO DETECT IN YOUNG
ADOLESCENTS.
IN FACT THERE'S A CAMPAIGN TO
HAVE THE MENSTRUAL CYCLE AND
ASKING ABOUT IT AS IMPORTANT AS
CHECKING FOR BLOOD PRESSURE OR
PULSE.
IT SHOULD BE A VITAL SIGN
BECAUSE IT COULD BE AN EARLY
SIGN OF ESTROGEN DEFICIENCY AND
IT COULD BE EXERCISE INDUCED AND
WEIGHT LOSS AND MANY ADOLESCENTS
HAVE A COMBINATION OF ALL THREE.
THIS IS A GREAT FIGURE BY MARY
JANE D'SOUZA AT PENN STATE AND
WE WANT ALL TO HAVE NORMAL ME
MENSES AND THIS IS WHERE WE HAVE
THE LOW ENERGY AVAILABILITY AND
PUTS THEM AT RISK FOR
OSTEOPOROSIS.
IT SHOWS AS A SPECTRUM.
I LIKE THE SLOPE OF THE LINE.
ARCHED WE NEED TO GET THEM TO
THE GREEN ZONE AND IF WE DON'T
KEEP AN EYE ON THEM THEY CAN
SLIP BACK DOWN.
HOW DO WE EVALUATE BONE HEALTH
IN CHILDREN?
AS I MENTIONED I HAVE TO SHOW
THIS WE LOOK AT GROWTH CHARTS
AND STUDY GROWTH CHART AND THINK
OF THE GAIN IN WEIGHT AND HEIGHT
AND THINK OF THE GRID VELOCITY
AND AS I MENTIONED EARLIER THAT
SHOULD MIRROR THE BONE ACCRUAL
CURVE AS DEXTA MEASUREMENTS AND
A PATIENT OF MINE AT 14 1/2 HAD
ANOREXIA AND CAME TO MY PRACTICE
AND STARTED TO LOSE BONE AND HER
GROWTH CHART LOOKED DIFFERENT
WITH THE PLATEAU OF HER WEIGHT.
AND HOW DO WE MEASURE BONE
HEALTH?
HOW DO WE DO THAT NON INVASIVELY
AND WE LOOK AT DUAL-ENERGY X-RAY
ABSORPTIOMETRY.
WE LOOK AT THE MUSCLES AND WHAT
AFFECTS THE BONE.
AND DXA HAS A TWO MEASURE OF
BONE DENSITY.
WE USE IT BECAUSE WE CAN GET
AWAY WITH A TINY RADIATION DOSE
AND HAVE PEDIATRIC REFERENCE
DATA AND KNOW HOW TO INTERPRET
THE MEASUREMENTS BASED ON THE
WEALTH OF DATA IN ALMOST 2,000
CHILDREN.
CHILDREN AND ADOLESCENTS WITH A
CHRONIC DISEASE CAN HAVE A
DISTORT THE BODY COMPOSITION
WHICH AFFECTS THE BONE HEALTH SO
WHAT DO WE DO WITH THE
MEASUREMENTS AND THE ISCT
DEFINES OSTEOPOROSIS IN A
PEDIATRIC PATIENT AS YOU LOOK AT
THE Z SCORE FROM THE DXA SCAN
AND HAVE TO HAVE SIGNS OF
SKELETAL FERTILITY AND WE DON'T
JUST TREAT THE SCAN BUT PATIENT.
THE CHILD HAS TO HAVE CLINICALLY
SIGNIFICANT FRACTURES TWO OR
MORE BY THE TIME THEIR 10 AND
DEFINE MANY THE LOW ABOUT BMD AS
A LOW SCORE OF 2.
THE AMERICAN COLLEGE OF SPORTS
MEDICINE SAYS AN ATHLETE IS
WEIGHT BEARING MORE THAN A
TYPICAL CHILD OR ADOLESCENT.
AT MINUS ONE IS A CHILD THEY'D
PUT ON WATCH.
MINUS 1 TO MINUS 1.9 IS LOW DONE
DENSITY AND OSTEOPOROSIS IS
MINUS 2.
IT'S IMPORTANT TO TAKE THE
HISTORY AND WHAT DO YOU LIKE TO
DO IN YOUR SPARE TIME?
WHAT ACTIVITIES ARE YOU INVOLVED
WITH IN SCHOOL AND HOW MUCH DO
YOU BECAUSE IT'S GOING TO CHANGE
HOW WE INTERPRET THE DXA SCAN.
BEYOND DXA THERE'S BEEN A MOVE
IN THE BONE FIELD.
IT'S CLINICALLY RELEVANT BUT
WHAT'S GOING ON INSIDE THE BONE
AND WHAT ABOUT THE
MICROARCHITECTURE AND STRUCTURE
OF BONE ITSELF DRIVING OUR
RESEARCH?
SO THE FIRST TOOL THAT I HAVE
THE OPPORTUNITY TO WORK WITH
ACTUALLY GIVEN TO ME BY A
GRATEFUL PATIENT AT BOSTON
CHILDREN'S.
I'M THANKFUL FOR THAT.
IT WAS A STANDARD PERIPHERAL
SCANNER IN WHICH WE WERE ABLE TO
GET ARM AND LEG MEASUREMENT.
THE RADIUS IN THE TIBIA IN
PATIENTS WE WERE FOLLOWING WITH
ANOREXIA NERVOSA AND OTHER
DISEASES AND IT'S A THREE
DIMENSIONAL MEASUREMENT BUT
BECAUSE IT'S AN EXTREMITY IT'S
IT'S AWAY FROM THE CENTRAL
ORGANS AND MINIMAL SIGNIFICANT
IONIZING RADIATION AND GETS TO
THE COMPARTMENT OF BONE ABOUT
20% OF THE SKELETON AND THE
CORTICAL COMPARTMENT WHICH IS
80%.
IT CAN BE VERY HELPFUL TO TRACK
WITH AN UNDERSTANDING OF THE
DISEASE PROCESS THE TWO
COMPARTMENTS AND IN PARTICULAR
WHAT HAPPENS WHEN WE START AN
INTERVENTION SUCH AS A NEW
HORMONAL THERAPY.
THEN OVER THE YEARS THE DREAM
MACHINE EVOLVED HIGH RESOLUTION
AND SOME KNOW WE HAVE ONE OF
THESE SCANNERS ON THE 7th FLOOR
IN A STORAGE AREA THAT THE GOING
TO BE ROLLED OUT.
I SAW MY PROGRAM OFFICER COMING
HERE AND PROBABLY WILL BE ABLE
TO START SCANNING PATIENTS IN
SEPTEMBER AND GIVES A BONE
BIOPSY AND SEE THE RESOLUTION OF
THE IMAGES AND WE CAN SEE HOW
THE BONE IS WOVEN TOGETHER.
IT'S A CORTICAL SHELL AND LOOK
AT THE UPPER EXTREMITY AND
RADIUS AND LOWER EXTREMITY AND
LOOK AT WEIGHT BEARING VERSUS
NOT AND WHETHER IT MAKES A
DIFFERENCE.
WE CAN COMFORTABLY MEASURE
PATIENTS AND WE GET THE LEG
COMFORTABLE IN THE SCANNER AND
WHAT'S NICE FROM A SAFETY
STANDPOINT THERE'S VERY LITTLE
RADIATION EMITTED BECAUSE THAT
THE EXTREMITY GOES INSIDE THE
SCANNER AND SELF SHIELDS AND
MAKE THE RADIATION COMMITTEE
HAPPY.
IT'S EASIER TO FIND A PLACE IN
THE CLINICAL CENTER AND ACADEMIC
CENTER FOR THESE.
I WANT TO SHOW OFF THE SCANNER
AND I WANT SO SHOW OFF THE
SCANNER AND THANK YOU TO DIANA
BIANCHI AND THE DIVISION BECAUSE
FOR GETTING THE SCANNER.
MASS GENERAL HOSPITAL IN BOSTON
I HAD TO WORK WITH AN ADULT
GROUP OF PATIENTS WITH CYSTIC
FIBROSIS.
I PROBABLY DON'T NEED TO POINT
TO IT, THIS IS A 28-YEAR-OLD
WITH CF AND THIS IS A HEALTHY
CONTROL AND THE ADULT.
WE'RE ALSO ABLE TO COLOR THE ROD
AND PLATE LIKE STRUCTURES THAT
EXPLAIN THE MICROARCHITECTURE
AND SEE CLEARLY HOW THEY DROP
OUT IN THE YOUNG ADULT WITH
CHRONIC DISEASE.
OTHER PICTURES THAT SHOW YOU
SOME OF THE MICROARCHITECTURE
AND IN PARTICULAR THE CORTICAL
RIM OF THE BONE WHICH CAN BE
VERY IMPORTANT FOR FRACTURE RISK
IF IT THINS THEN THE BONE IS APT
TO FRACTURE.
SO OUR TEAM, AS I WAS ALLUDING
TO, IS INTERESTED IN THE CONCEPT
OF THE MUSCLE BONE UNIT AND
WE'RE STUDYING THE RELATION OF
BONE STRENGTH AND THE BIO
MECHANICAL FORCES AND HOW THE
MUSCLE AROUND THE BONE MAKES IT
STRONG AND ALSO HELPS US TO
UNDERSTAND IF A DIAGNOSIS IS A
PRIMARY BONE DISORDER.
THERE'S A PROBLEM WITH THE BONE
SUCH AS PATIENTS WITH
OSTEOGENESIS AND SOME ARE
WORKING WITH THAT IN THE
AUDIENCE VERSUS A SECONDARY BONE
DISEASE THAT MAY BE AFFECTING
THE MUSCLE AROUND THE BONE THERE
ARE MAKING IT WEAK.
A PATIENT WITH DUCHENNE MUSCULAR
DYSTROPHY AND IT'S AGGREGATED
BECAUSE WE START USING
CORTICOIDS AND IN PART OF AN UL
1 AT JOHNS HOPKINS IN JULY WE'LL
START SEEING PATIENTS WITH A
CANCER SUSCEPTIBILITY SYNDROMES
OLLIER DISEASE AND MAFFUCCI
SYNDROME IN ADDITION TO THE
MUSCLE LEAN BODY MASS BY DXA
WE'LL LOOK AT MUSCLE GRIP
STRENGTH THAT SEEMS LIKE A
SIMPLE MEASURE BUT IT'S
IMPORTANT BECAUSE IN PEDIATRICS
ADOLESCENT MEDICINE WE HAVEN'T
THOUGHT A LOT ABOUT MUSCLE
FUNCTION.
IT'S BEEN CONSIDERED AN ADULT
MEDICINE BUT WE'RE EXCITED TO
LOOK AT MUSCLE FUNCTION AND
WATCH THAT EVOLVE OVER TIME AND
TO THINK ABOUT HOW IT PLAYS INTO
THE BONE LOSS OF SOME OF THESE
MODELS.
AGAIN THE MUSCLE BONE UNIT AND
COME TO THE 8th FLOOR AND WE'LL
HAVE DXA DATA LOOKING AT THE
LEAN BODY MASS AND THE DATA FROM
A SCAN WHOLE BODY AND ASSESSING
MUSCLE GRIP STRENGTH.
I HOPE TO HAVE MORE DATA TO
SHARE SOON.
CHANGING GEARS, MY TEAM IN
BOSTON 15 PLUS YEARS AGO GOT
INTERESTED IN WHAT WAS HAPPENING
WITHIN BONE MARROW HOW THE
MESENCHYMAL STEM CELLS AND LOOK
AT FAT INSTEAD OF OSTEOBLASTS.
THEY'RE CRITICALLY IMPORTANT FOR
THE BONE FORMATION IN
ADOLESCENCE TO ACHIEVE THE PEAK
BONE MASS AND THE BONE FORMATION
IS IMPORTANT TO GET THERE AND
WHAT HAPPENED WHAT HAPPENS IN
THE PATIENTS IS OVER AND OVER WE
AND OTHER GROUPS SAW THE BONE
FORMATION WAS DEPRESSED AND IGF1
WAS LOW AND ESTROGEN AND HIGH
CORTISOL CAN SHIFT THEM TOWARDS
FAT.
WE NON INVASIVELY STUDIED THIS
AND LOOKED AT THE DISTAL FEMUR
TO SEE HOW MUCH FAT IS THERE AND
RED IS CELLULAR MARROW AND ALSO
MR SPECTROSCOPY AND HOW MUCH
WATER AND SATURATED FATS ARE
THERE.
THERE ARE NUMEROUS HORMONAL
ALTERATIONS OF ANOREXIA NERVOSA.
EATING DISORDERS ARE COMMON IN
THE U.S.
THERE'S TIMES MORE PREVALENT
SINCE THE PANDEMIC.
A WAY YOUNG PEOPLE TRY TO GAIN
CONTROL THIS IS THE FAR END OF
THE FEMALE ATHLETE FOR THE RED
SPECTRUM I TALKED ABOUT IN
ATHLETES.
THEY CAN HAVE A HORMONE
RESISTANCE AND A COUNTER
REGULATORY HORMONE IN THE FACE
OF STARVATION AND LOW IGF-1 AND
IT'S A SIGNALLING FACTOR FOR
OSTEOBLASTS AND EXPLAINS IN PART
WHY THE FORMATION IS LOW AND LOW
ESTRADIOL AND AMENORRHEA AND
HIGH CORTISOL RELATED TO THE
DEPRESSION AND STARVATION
ITSELF.
I HAD THE OPPORTUNITY A LONG
TIME AGO NOW IN 2010 TO WRITE A
REVIEW FOR THE NEW ENGLAND
JOURNAL ON AMENORRHEA AND I WENT
DOWN THE STREET TO TALK TO THE
MEDICAL ILLUSTRATOR BECAUSE I'M
NOT ARTISTIC AND ON A NAPKIN I
HAD THIS STICK FIGURE AND VOILA,
LOOK WHAT HE DID.
I LOVE TO SHOW THE FIGURE
BECAUSE IT SHOWS HOW MANY
HORMONAL AXES ARE ALTERED AND
TISSUES ARE AFFECTED IN PATIENTS
WITH AMENORRHEA AND SOME MEET
CRITERIA FOR AN EATING DISORDER
HAVE THE MOST EXTREME
ALTERATIONS AND THE ONES
IMPORTANT TO POINT OUT ARE THE
OAF -- OVARY IS NOT MAKING
ENOUGH ESTRADIOL AND
NEUROTRANSMITTERS ARE AFFECTED.
IT'S IMPORTANT TO REMEMBER AS WE
TALK ABOUT HOW WE TREAT THESE
PATIENTS.
SO, WE ALREADY MENTIONED BONE
DENSITY IS 25% BELOW THAT
EXPECTED FOR AGE AND GENDER IN
THESE ADD ADOLESCENTS.
FRACTURE RISK COULD BE SEVENFOLD
INCREASE AND SOME DEFICITS CAN
BE IRREVERSIBLE AND AS PATIENTS
GET OLDER BONE ABSORPTION CAN
GET HIGHER AND AN UNCOUPLING OF
THE OSTEOBLAST FUNCTION.
THIS IS A PATIENT WITH ANOREXIA
AND WE ALL AGREE THEY HAVE A LOW
BONE MASS FOR AGE AND OUR
RESEARCH IN ENROLLING A PATIENT
LIKE THIS IS TO FIGURE OUT
WHAT'S GOING TO ON IN THE BONE
MARROW THAT MIGHT BE EXPLAINING
WHAT WE SEE ON THE DXA SCAN.
OVER A DECADE AGO DR. MISHRA NOW
AT UVA LOOKED AT TRANS DERMAL
ESTROGEN IN YOUNG ADOLESCENTS
WITH ANOREXIA NERVOSA AND LOOKED
AT THE LUMBAR SPINE BY DXA AND
6, 12 AND 18 MONTHS INTO THERAPY
WITH AN ESTRADIOL PATCH.
AROUND 12 MONTHS SHE ADDED AN
ORAL PROGESTERONE TO BRING BACK
WHAT WOULD HAPPEN IN THE FACE OF
NORMAL OR VARYING FUNCTION AND
YOU CAN SEE THE RED COLUMNS
THERE WAS A LOSS OF BONE.
NOT MUCH OF A CHANGE WHICH COULD
BE PATHOLOGICAL IN AN ADOLESCENT
AND THE GREEN BAR ARE THE
PATIENTS RECEIVING TRANS DERMAL
ESTROGEN AND THE BLUE BAR ARE
THE HEALTHY CONTROLS.
THESE ARE ENCOURAGING DATA IF WE
GIVE BACK TRANS DERMAL ESTROGEN
AND ESTRADIOL THEY ALMOST
APPROACH THAT OF THE HEALTHY
CONTROLS OVER 18 MONTHS AND THE
SAFETY PROFILE WAS ALSO VERY
POSITIVE FOR THIS CLINICAL
TRIAL.
MEANWHILE ACROSS TO THE CITY
DR. AMY DEVOS AT BOSTON
CHILDREN'S WERE LOOKING AT AN
ORAL REGIMENT FOR ADULTS WITH
ANOREXIA AND DHEA, ADRENAL
STEROID IS A PRECURSOR OF
ESTROGENS AND WE DID PILOT
STUDIES ALL FDA SPONSORED TO
DETERMINE WHAT A SAFE DOSE WOULD
BE AND GAVE IT WITH A
COMBINATION OF A 20 MICROGRAM
ESTRADIOL PILL SO COMBINATION
THERAPY.
THESE WERE ALL OLDER ADOLESCENTS
AND YOUNG ADULTS AND THESE ARE
SPINE CURVES SHOW THE LUMBAR
SPINE AT THE HIP AND BODY.
THERE WAS AN ARREST IN BONE LOSS
AND IN OUR PLACEBO THERE WAS
MORE NOISE BUT A TREND OF A
DECREASE AND THIS WAS AN ORAL
THERAPY AND SOMETHING USED IN
THE CLINICAL SETTING FOR YOUNG
ADULTS WITH STRESS FRACTURES AND
HAVE HAD SOME SUCCESS.
IN THE SAME STUDY WE TOOK OUR
DXA SCANS AND TURNED THEM AND
EMPLOYED THE STRUCTURAL ANALYSIS
PROGRAM I STARTED IN ENGINEERING
SO COME BACK TO IT AND.
STRENGTH OF BONE AND BONE
STRENGTH INDEX AND LOOKING AT
INERTIA AND IN OUR TREATED GROUP
THERE WAS A POSITIVE CHANGE IN
ALL THE PATIENTS OVER TIME OVER
18 MONTHS.
A DECREASE IN ALL PARAMETERS IN
THE PLACEBO GROUP AND ALL THE
END POINTS WERE STATISTICALLY
SIGNIFICANT.
VERY ENCOURAGING DATA.
SO NOW SWITCHING GEARS, ANYTIME
OVER THE PAST DECADE I HAVE
SPOKEN ON ADOLESCENT BONE HEALTH
I GET A QUESTION OR TWO OR THREE
ABOUT TRANSGENDER YOUTH.
WE BLOCK PUBERTY WHAT HAPPENS TO
THE SKELETON?
OFTEN THESE ARE COMPLETELY
HEALTHY ADOLESCENTS AND VERY
VULNERABLE AND DEVELOP GENDER
DYSPHORIA AND NOT SURE ABOUT
THEIR GENDER ASSIGNMENT AND WANT
TO BE THE OPPOSITE GENDER AND AS
ENDOCRINOLOGISTS WE HAVE THE
ABILITY TO BLOCK PUBERTY IN THE
A YOUNG PERSON WITH THEIR FAMILY
DECIDES WHAT TO AS THE NEXT
STEP.
WE USE A HORMONE THAT BOOKS
FOLLICLE STIMULATING FEMALE AND
AFFECTS OVARIAN FUNCTION AND IN
A MALE TESTOSTERONE.
I WAS A P.I. ON A TWO-SITE STUDY
IN CINCINNATI CHILDREN'S AND WHO
OF MY MENTEES BECAME THE SITE
P.I.s AND CONTINUE TO DO THIS
WORK AND I HAVE PERMISSION TO
CONTINUE TO HELP THEM.
SOME KNOW WHEN WE THINK OF
GENDER-AFFIRMING HORMONES.
THERE'S TWO STEPS.
THE TIME PERIOD IT MAKE THE
DECISION IS OVER MANY MONTHS.
THIS IS NOT A RASH DECISION AT
4:30 ON A FRIDAY AFTERNOON.
THESE ARE PATIENTS WE MEET AND
EMPLOYEE SOMEONE FROM THE
BEHAVIORAL HEALTH SIDE TO HELP
US ASSESS WHETHER THIS IS A
TRANSIENT PHASE OR NOT AND
IMPORTANTLY BECAUSE THEY HAVE
GENDER DYSPHORIA THEY NEED HELP
WITH ANXIETY AND DEPRESSION AND
HELP COPING WITH NEXT STEPS.
IF WE MAKE THE DECISION TO BLOCK
PUBERTY IT BUYS TIME TO THINK
ABOUT EVENTUALLY GENDER
AFFIRMING HORMONES AND
MASCULINIZING HORMONES AND I'M
INTERESTED IN THE FAT
DISTRIBUTION AND WHAT HAPPENS TO
FAT DISTRIBUTION AND TO LEAN
BODY MASS AND OTHER CHANGES THAT
MIGHT AFFECT SKELETAL ACCRUAL.
IT'S VERY COMPLICATED TO
INTERPRET DXA SCANS IN THESE
PATIENTS.
WHICH SCORE DO WE USE AND WHICH
REFERENCE DATA SET?
DO WE USE ASSIGNED SEX AT BIRTH
AND WE DO IN THE PUBERTAL STABLE
AND WE USED THE AFFIRMED GENDER
AND IN THE RESEARCH SETTING WE
USE BOTH AND IT'S INTERESTING TO
SEE HOW CLOSELY THEY MIRROR THE
ASSIGNED SEX AT BIRTH AND HOW
CLOSE THEY GET TO THE PREFERRED
GENDER, THE AFFIRMED GENDER.
IN EVERY SEARCH PROTOCOL WE HAVE
THE LUXURY OF LOOKING BOTH WAYS.
IF WE HAVE A CHILD OR ADOLESCENT
WE MAY INTERPRET FOR BONE AND WE
USE THE HEIGHT FROM CDC GROWTH
CHARTS AND IF WE HAD A CHILD OR
ADOLESCENT WITH SHORT STATURE WE
WOULD USE THAT AS WELL.
I LOVE THE CARTOON BECAUSE IT'S
HO
OFTEN HOW I FEEL?
DO THEY HAVE INITIAL THREATS TO
BONE HEALTH STARTING OUT?
THE STAGE OF THE TREATMENT AND
GENDER AFFIRMING THERAPY, THE
ASSIGNED SEX AT BIRTH, WHAT'S
THEIR AFFIRMED GENDER AND WHAT
ARE WE GOING TOWARDS AND WHICH
GENDER AND ARE WE PROVIDING
CLINICAL CARE OR ARE WE IN THE
RESEARCH SETTING AND THERE'S
ASSIGNED MALE AT BIRTH AND
ASSIGNED FEMALE AT BIRTH AS FAAB
AND TAKE YOU THROUGH STUDIES OF
WHAT WE KNOW.
SO TRANSGENDER FEMALES ASSIGNED
MALES AT BIRTH HAVE BEEN SHOWN
IN NUMEROUS STUDIES INCLUDING MY
GROUPS AS HAVING A LOWER LUMBAR
SPINE BONE DENSITY EVEN AT
BASELINE BEFORE PUBERTAL
BLOCKADE AND AS A GROUP THEY
TEND TO HAVE LOWER ENGAGEMENT IN
EXERCISE AND MORE CONCERNED
ABOUT TEASING IN THE BALL FIELD
AND NOT SIGNED UP FOR
COMPETITIVE OR GROUP SPORTS AND
AT HIGH RISK FOR RESTRICTIVE
EATING DISORDERS.
I'VE TAKEN CARE OF NUMEROUS
TRANSGENDER FEMALES TRYING TO
RESTRICT AND CAN START AT A
LOWER BONE DENSITY AND THEN
RESTRICT AND START LOSING BONE
AS WE TALKED ABOUT A MINUTE AGO.
THEY'RE NOT AS ENGAGED IN WEIGHT
BEARING EXERCISE IS IMPORTANT IN
OUR HISTORY TO EVALUATE PHYSICAL
ACTIVITY AND NUTRITION.
IT'S PART OF THEIR CLINICAL CARE
FOR US AS RESEARCHERS WHEN THEY
COME INTO OUR PROTOCOL.
THIS HAS BEEN SHOWN AGAIN
ASSIGNED MALES.
THESE ARE ASSIGNED FEMALES AND
ASSIGNED MALES.
WIDE BARS HERE.
CONFIDENCE INTERVALS BUT YOU CAN
SEE THE TREND.
THE ASSIGNED MALES ON AVERAGE
HAD A LOWER BONE DENSITY SCORE
DEPENDING ON HOW YOU INTERPRETED
IT.
THE SEX ASSIGNED AT BIRTH,
AFFIRMED GENDER AND THEY LOOKED
AT IT A LOT OF DIFFERENT WAYS.
THIS IS JANET LEE AND COLLEAGUES
AND SAW NO DIFFERENCES IN THE
NON-WEIGHT BEARING RADIUS WHICH
IS DIFFERENT SO MAYBE THE
DIFFERENCE IN WEIGHT BEARING I
TALKED ABOUT SEEMED TO BEAR OUT
IN THE STUDY.
WE SAW THE SAME AND HAD A CASE
SERIES OF SEX TRANS FEMALES AND
ALL HAD A LOWER BONE DENSITY
COMPARED TO REFERENCE DATA AND
LOW Z SCORES COMPARED TO
CONTROLS AND THERE'S OTHER
REPORTS AND THEY'RE MORE IN THE
LITERATURE NOW.
OTHER DETERMINATES THE ROLE OF
NUTRITION.
TRANS FEMALES ARE AT HIGH RISK
FOR EATING DISORDERS BUT A GROUP
SHOWED THAT VITAMIN D DEFICIENCY
WAS COMMON AND NEGATIVELY
ASSOCIATED WITH LUMBAR SPINE
SCORES AND BMI WAS AN IMPORTANT
PROS -- POSITIVE PREDICTOR AND
ASSIGNED MALE AT BIRTH WAS A
STATISTICAL TREND.
LASTLY, AS PART OF THE R01 WE'RE
LOOKING AT BONE MARROW
COMPOSITION.
WE ARE ENGAGED IN THE STUDIES
NOW.
ANOREXIA REPORTS ARE OUT.
I HAVE A K23 RECIPIENT LOOKING
AT MARROW COMPOSITION IN
INFLAMMATORY BOWEL DISEASE OUT
OF BOSTON CHILDREN'S AND
FINISHING WITH BOSTON AND
CINCINNATI LOOKING AT TRANS
GENDER YOUTH AND LOOKING AT
GENDER AFFIRMING THERAPY SO STAY
TUNED.
I THINK PART OF THE PROBLEM IS
THERE'S MYTHS CIRCULATING TO
WHAT HAPPENS TO BONE BECAUSE
NONE OF US KNOW.
I HOPE WE'RE GOING TO GET
SCIENTIFIC DATA THAT'S GOING TO
HELP CLINICIANS MAKING
DECISIONS.
LAST BUT NOT LEAST, I WITH MY
GREAT TEAM IN THE AUDIENCE, WE
WERE TRYING TO ESTABLISH NICHD
AS THE NUMBER ONE RESEARCH
DESTINATION CENTER FOR POI.
IT'S BEEN A KNOWN CENTER FOR
ADULT WOMEN WITH THIS DIAGNOSIS
AND COLLEAGUES PUT NIH ON THE
MAP FOR ADULT WOMEN ESPECIALLY
THOSE COMING OUT OF REPRODUCTIVE
ENDOCRINE INFERTILITY CLINICS
AND WOULD LIKE TO SPAN RESEARCH
IN ADOLESCENTS BECAUSE THEY GO
FROM CENTER TO CENTER BEFORE
IT'S KNOWN WHAT IS GOING ON AND
BEING IN THE HAND OF AN
ENDOCRINOLOGIST OR GYNECOLOGIST
AND WHAT WE DO IS ANECDOTAL AND
WHAT EXPERTS DO AROUND THE
COUNTRY AND IT'S NOT EVIDENCE
BASED.
THEY PRESENT WITH LOW DENSITY
AND SOMETIMES FRACTURES AND
ALMOST ALL HAVE FATIGUE.
AND THE MAJORITY OF THE PATIENTS
IS IDIOPATHIC WE DON'T
UNDERSTAND WHY THEY HAVE IT AND
WOULD LIKE TO PUT A GENETIC NAME
TO WHAT THEY HAVE CLINICALLY AND
SEE A LARGE GROUP OF PATIENTS
FROM NCI AND THOSE WHO HAVE
CHEMOTHERAPY INDUCED MANY
FAILURE AND POI IS A MORE
HOPEFUL TERM AND MORE ACCURATE
BECAUSE THE FUNCTION CAN WAX AND
WANE IN A WOMAN.
IT ENCOMPASSES THE VARIATION
PRESENTATION AND ESPECIALLY WHEN
I WORKED WITH CANCER SURVIVORS
WHO BATTLED THAT PRIMARY
MALIGNANCY AND TO BE TOLD THEY
HAVE A FAILURE.
I'VE HAD THEM TELL ME THEY FEEL
LIKE A FAILURE SO INSUFFICIENCY
IS SOMETHING WE CAN TREAT AND
ADD BACK HORMONAL THERAPY AND
PART OF A WIDER SYNDROME AND SEE
MANY WITH A DIAGNOSIS AND POI
COULD BE PART OF THAT.
THEY OFTEN COME IN WITH
AMENORRHEA OR LENGTHENING CYCLE
AND YOUNGER TEENS WITH DELAYED
PUBERTY AND PURE ESTROGEN
DEFICIENCY AND OTHER HORMONAL
VARIANCES AND AND A DIAGNOSIS IS
MADE MEASURING LH OVER THE UPPER
LIMIT ON TWO SEPARATE OCCASIONS.
SO WE GET IT ONCE AND CONFIRM IT
A SECOND TIME.
WE DID A CASE CONTROL STUDY AT
CINCINNATI CHILDREN'S AND SHOWED
THE TRANS GENDER BONE STUDY.
I'M SHOWING YOU THIS IN NINE
ADOLESCENTS WITH NEWLY DIAGNOSED
IDIOPATHIC POI AND SOME HEALTHY
CONTROLLED BECAUSE THE PILOT
STUDY INFORMED THE STUDY WE HAVE
PLANNED FOR THE CLINICAL CENTER.
OUR ADOLESCENTS WERE 11 TO 18.
ALMOST 80% OF THEM REPORTED LOW
ENERGY.
WE HAD A MENOPAUSAL RATING SCALE
WE USED AND THAT'S ALWAYS BEEN
MY IMPRESSION THAT A DIAGNOSIS
ALL OF THEM ARE VERY TIRED.
AS A CLINICIAN IT'S REWARDING TO
TAKE CARE OF THEM BECAUSE YOU
PHYSICALLY SEE A DIFFERENCE WHEN
THEY COME BACK THREE MONTHS
LATER AFTER STARTING ESTROGEN.
WE SAW A LOW SPINAL BONE DENSITY
BY DXA.
I TRIED TO BOLD IT.
THE LUMBAR SPINE AND HIPS AND
SCORE ALL THREE WERE LOWER IN
OUR PATIENT WITH POI.
USING STANDARD PCTC THEY HAD A
SMALLER CORTICAL AREA AT THE
TIBIA AND REDUCED CORTICAL SHELL
I SHOWED AND LOWER TRABECULAR
BONE DENSITY THINKING ABOUT A
WEIGHT BEARING AND NON-WEIGHT
BEARING SITE.
I WANT TO TAKE A MINUTE TO TALK
ABOUT THE CANCER SURVIVORS POI
IN THOSE PATIENTS DUE TO RECEIPT
OF RADIATION AND THE AGENTS.
WE STILL NEED TO RULE OUT
SECONDARY CAUSES OF BONE LOSS
AND SOME CAN HAVE CELIAC DISEASE
AND THIS IS A FIGURE THAT I
LOVE.
IT SHOWS THE MECHANISMS OF BONE
LOSS AND HOW THE OVARY IS
AFFECTED.
YOU CAN SEE HERE THERE'S
PRENATAL LOSS OF OLIGONIA AND
ACCELERATED LOSS OF THE
PRIMORDIAL FOLLICLES AND LEADING
TO A SHORTER HALF LIFE.
THERE CAN BE DIRECT STROMAL
DAMAGE AND ULTIMATELY THE PMFs
UNDER GO ATRISIA AND A LOT OF
MECHANISMS AT PLAY LEADING TO
RAPID OVARIAN DAMAGE.
WHERE DOES THIS FIT IN?
I LIKE THIS FIGURE THAT SHOWS US
THIS IS PEAK BONE MASS IMPAIRED
BECAUSE THERE'S HORMONAL
DEPRIVATION AND THERE COULD BE
MOBILIZATION RELATED TO THE
ILLNESS BECAUSE OF THE SURGERIES
AND THERE'S CHEMO THERAPIES AND
THE REGIMENT FOR THE
TRANSPLANTATION AND DIRECT
DAMAGE FROM RADIO THERAPY AND
CYTOKINES CAN AFFECT BONE
TURNOVER AND NUTRITION COULD BE
ALTERED.
THEY'RE NOT AS HUNGRY OR MAY BE
COMPLIANT WITH THEIR VITAMIN D
AND CALCIUM BECAUSE THEY DON'T
FEEL WELL AND GLUCOCORDICOIDS
AND HOW CAN WE INTERVENE AND
HELP PATIENTS.
SO WHAT WE PLANNED IS DEEP
PHENOTYPING OF ADOLESCENTS WITH
POI.
MY SCANNER AND I ARE GOING
THROUGH THE APPROVAL PROCESS.
ALL THE DIFFERENT REGULATORY
STEPS HAND IN HAND.
WE NOT ONLY GET DXA SCANS OF
BONE DENSITY AND BODY
COMPOSITION AND GET THE RADIUS
AND THE TIBIA TO STUDY THAT AND
WE I HAVE BEEN HEARTENED BY THE
SPIRIT OF COLLABORATION HERE.
YOU ALL ARE AMAZING.
I HAVE A GREAT GROUP OF
CARDIOLOGISTS AND HEMATOLOGISTS
AND LIPID SPECIALISTS.
WE'RE GOING TO LOOK AT LIPIDS
AND INFLAMMATION AND
ELECTROPHYSIOLOGIC CHANGES AND
PULSE WAVE VELOCITY AND THEN
TAKE THE PHENOTYPE AND WE'RE
DOING SEQUENCING DATA AND SEE
HOW THE GENOTYPE RELATES TO THE
PHENOTYPE AND WHETHER THE
GENOTYPE MAY BE PREDICTIVE OF
THE RESPONSE TO THERAPY.
WE'RE ALSO WORKING WITH A TEAM
THINKING ABOUT THE VAGINAL
IMMUNITY AND MICROBIOME AND IT'S
A WONDERFUL OPPORTUNITY TO
COLLABORATE WITH PEDIATRIC GINE
KOL GIFTS AND THINKING OF
EMOTIONAL HEALTH.
IT'S SO SHOCKING FOR THE YOUNG
WOMEN.
THEY'RE TIRED AND EXPECT ME TO
SAY THEY HAVE HYPERTHYROIDISM OR
SOMETHING ORDINARY AND FIND THEY
HAVE SOMETHING CONSISTENT WITH
THEIR MENOPAUSE AND WE NEED TO
MAKE SURE AT BASELINE WHAT THEIR
FUNCTIONING IS AND WELL BEING
AND QUALITY OF LIFE AND HOW THAT
CHANGES AS I GIVE BACK HORMONE
REPLACEMENT THERAPY AND WILL BE
IMPORTANT TO GUIDE US TO WHAT
THE OPTIMAL THERAPY IS.
WE'LL BE USING WHAT IS THE
RECOMMENDED STANDARD OF CARE AND
WE HAVE DATA ON WOMEN WITH
TURNER'S SYNDROME.
THEY'LL NOT BE IN OUR PLANNED
TRIAL BECAUSE THEY HAVE
CARDIOVASCULAR ABNORMALITIES AT
BASELINE.
WE'RE EXCLUDING THAT GROUP AND
LOOKING AT EVERYONE ELSE.
TRANS DERMAL ESTROGEN AVOIDS
FIRST PASS HEPATIC EFFECTS AND
THERE'S A RISK OF THROMBOSIS AND
AS A PATCH A YOUNG PERSON
DOESN'T HAVE TO REMEMBER TO TAKE
A PILL AND KNOW IT'S BETTER FOR
BONE DENSITY THAN ORAL
CONTRACEPTIVE PILL.
THESE PATIENTS CAN GET PREGNANT
SO IT'S NOT WRONG TO USE AN ORAL
CO CONTRASEPTIVE AND WHAT WOULD
BE BETTER IS A TRANS DERM
SYSTEM.
AND THE OTHER THING I'LL
MENTION, THERE ARE TRIALS GOING
TO ON.
A TEAM IS LOOKING AT FERTILITY
PRESERVATION AND SOME STUDIES IN
THE TREATMENT TRIAL WHO ARE ALSO
INVOLVED IN THESE IMPORTANT
PROTOCOLS.
I HOPE IN A YEAR OR TWO TO BE
INVITED TO SHOW YOU DATA.
WE'RE EXCITED TO HAVE THE
OPPORTUNITY HERE AND IT'S
WONDERFUL ON THE CAMPUS TO DO
THE DEEP GENOTYPES AND TO
PHENOTYPE THEM AND AS I
MENTIONED I'M VERY INTERESTED IN
HOW THAT MIGHT PREDICT RESPONSE
TO THERAPY AND LOOKING AT A
NUMBER OF TISSUES.
SO IN SUMMARY, POI IS A PUZZLING
DISORDER.
THE VARIATION CAN VARY WIDELY AS
WE MEET THESE PATIENTS.
THE ETIOLOGY IS HETEROUS AND WE
NEED TO UNDER THE WHAT THAT
REGIMENT IS FOR HORMONE
REPLACEMENT THERAPY.
BEFORE I CLOSE I WANTED TO SHARE
A COUPLE MORE SLIDES THINKING
ABOUT A NEW AREA.
AS I MENTIONED WITH THE
TRANSGENDER STUDY THIS IS ONE
WHERE I'VE HAD A LOT OF HANDS IN
THE AUDIENCE WHEN I GIVE TALKS
ON ADOLESCENT BONE HEALTH WHICH
HAS LED TO NEW COLLABORATIONS.
SO INTERESTINGLY, IT'S IN THE
LITERATURE BLACK CHILDREN --
SELF-REPORTED BLACK CHILDREN AND
ADULTS HAVE A HIGHER BONE
DENSITY AND APPEAR TO HAVE FEWER
FRACTURES COMPARED TO WHITE
PEERS BUT THE QUESTION IS WHAT
IS RACE CAPTURING?
COULD THAT REALLY BE AND IS IT
SKIN PIGMENTATION OR UNDERLYING
GENETIC FACTORS?
IS IT ANCESTRY PREDICTING WHAT
WE'RE SEEING IN THE
SELF-REPORTED RACE AND MIGHT IT
REFLECT DIFFERENTIAL EXPERIENCES
DIFFERENT GROUPS HAVE?
IT'S ALSO AWKWARD FOR DXA TO ASK
ABOUT RACE AND FAMILIES TO
ANSWER IT AND INCREASINGLY AS
WE'VE HAD INCREASING SENSITIVELY
AROUND RACE AND HOW WE'RE USING
THE DATA AND IT'S CAUSED US ALL
TO QUESTION WHAT THE STANDARD
PRACTICES HAVE BEEN AND MOVING
AWAY IN HEALTH GUIDELINES FROM
IMPERIAL USE OF RACE.
I WANTED TO REVIEW WITH YOU HOW
IS RACE APPLIED IN
DXA.
IN THE PEEDS CLINIC CARE WE
MEASURE CHILDREN AND GET HEIGHT
AND WEIGHT AND GET A SCORE FOR
BOTH AND USE THE CDC OR HAVE
LONGITUDINAL GROWTH CHART AND WE
LOOK AT THE PERCENTILES OF
WHAT'S NORMAL AND ABNORMAL AND
PROVIDES US TO REFER TO A
SPECIALIST OR INTERVENE IN A
DIAGNOSTIC WORK UP.
HERE'S A DXA SCANNER AND WE GET
THE ASSIGNED SEX AND THE ABLE
AND RACE AND WE CALCULATE A C
SCORE.
TOLD YOU WHAT'S NORMAL AND
ABNORMAL AND THAT'S IMPORTANT
DATA BECAUSE IT IMPACTS WHERE WE
REFER THEM TO A SPECIALIST OR DO
A WORK UP.
EVEN HOW OFTEN WE BRING THEM
BACK TO HALF DXA SCANS.
WE ALSO KNOW IS A GOLD STANDARD
FOR PEDIATRIC DEFERENCE DATA
SETS IS BINARY BLACK VERSUS
NON-BLACK.
I'VE SEEN THE DATA AND SEE WHY I
WAS NOT INVOLVED IN GENERATION
OF THE DATA BUT HAVE SEEN THE
DATA.
THERE WAS CLEARLY WHEN THEY
PLOTTED THE DATA, THE BLACK
CHILDREN'S BONE DENSITY WAS HERE
AND EVERYONE ELSE, WHITE, ASIAN,
ANY OTHER RACIAL ETHNIC GROUP
WAS DOWN HERE.
AND SO THAT WAS THE REASON FOR
THAT BINARY SET UP.
THE DATA WERE PUBLISHED IN 2007
AND THEN 2011 AND HAVE BEEN
USING THE GOLD STANDARD AND
AROUND THE COUNTRY AND WORLD IN
DXA UNITS, RACE IS ASKED ABOUT
TO BE EMPLOYED TO FIGURE OUT
WHICH WAY TO GO.
THE BLACK OR NON BLACK AND THE
DECISIONS CAN VARY IN TERMS OF C
SCORES.
MY TEAM ON THE 8th FLOOR OF THE
CLINICAL CENTER IS VERY
INTERESTED IN TRYING TO
UNDERSTAND WHAT THE REFERENCE
DATA ARE CAPTURING.
SO WE HAVE THIS IN A CABINET
WE'LL START DOING SKIN TONE
MEASUREMENTS TO QUANTITATIVELY
LOOK AT SKIN TONE WITH THE HOPE
OF EVENTUALLY HAVING REFERENCE
DATA BY SKIN TONE AND MOVING
AWAY FROM RACE.
WE WONDER IF ABOUT WHAT IS
CAPTURED BY RACE IS SKIN TONE.
THE BEST IS PROBABLY GENOTYPING
PATIENTS BUT THAT'S NOT GOING TO
BE POSSIBLE IN CLINICS.
THINK OF RURAL CLINICS AROUND
THE U.S. THEY WON'T BE ABLE TO
SEQUENCE EVERYONE AND IF WE CAN
SHOW SKIN TONE IS AN EASY TOOL
AND RELATIVELY INEXPENSIVE IF IT
CORRELATES WITH THE GENOTYPE,
THIS IS A TOOL WE CAN EASILY
ROLL OUT TO PRACTICE AND QUICKLY
ACCUMULATE DATA FOR A NEW DXA
PEDIATRIC REFERENCE DATABASE AND
WILL BE PARTICULARLY VALUABLE
FOR CHILDREN AND ADOLESCENTS OF
MIXED RACE AND WHAT WE DO WITH
THEM AND IT DEPENDS ON HOW THEY
SELF-IDENTIFY AND THERE CAN BE
VARIABILITY IN HOW ONE LOOKS AND
THAT SELF-REPORTED DATA IS BEING
USED TO MAKE IMPORTANT CLINICAL
DECISIONS.
SO I'M VERY PASSIONATE ABOUT
THIS RESEARCH AND GRATEFUL TO MY
TEAM WHO IS HELPING ME CARRY IT
OUT AND HOPE WE'RE GOING TO BE
ABLE TO MOVE THE NEEDLE ON THIS.
I'D LIKE TO THANK MY
COLLABORATORS.
THESE ARE MY EXTRAMURAL
COLLABORATORS IN BOSTON
CHILDREN'S, BRIGHAM AND WOMEN'S,
PORTLAND MAIN AND BAYLOR COLLEGE
OF MEDICINE IN HOUSTON AND
IMPORTANTLY MY ADOLESCENT AND
BODY COMPOSITION LAB.
I'D HAVE THEM STAND UP BUT I
WON'T EMBARRASS THEM.
IN THE INTEREST OF TIME I'LL
POINT TO THEIR BOLDED NAMES AND
PICTURES.
IMPORTANTLY THE INCREDIBLE
COLLABORATORS I ALREADY HAVE.
I'VE ONLY BEEN HERE NINE MONTHS
AND I'VE ALREADY THROUGH
CONNECTIONS AND A COLLABORATIVE
SPIRIT HAVE INCREDIBLE
COLLABORATORS.
GRATEFUL FOR ALL OF YOU AND
EXCITED TO START DOING RESEARCH
TOGETHER.
THANK YOU AGAIN FOR THE
INVITATION TO SPEAK.
>> IT'S EXCITING AND THE ISSUES
OF WE TALK ABOUT RACE AND
SOMETIMES WE USE THAT AS A
SERVICE OF OTHER THINGS AND
LOOKING AT THAT IN MORE DETAIL.
WE DO HAVE QUESTIONS FROM THE
AUDIENCE.
WE HAVE TIME FOR QUESTIONS IN
THE AUDIENCE.
IS THERE A ROLE FOR BONE DENSITY
SCREENING AND WHAT DO YOU DO
WITH THE INFORMATION?
>> THERE'S OPTIMAL TIMES.
IT DEPENDS ON WHO YOU ASK.
I TEND TO AT THE BEGINNING OF
PUBERTY AND ADOLESCENCE AND SEE
WHERE WE ARE, 70% TO 80% OF BONE
DENSITY IS DICTATED FROM GENETIC
FACTORS AND I DON'T KNOW IF
SOMEONE IS COMING FROM A HIGH OR
LOW BONE MASS FAMILY AND I MAY
BE MORE AGGRESSIVE IN STARTING
MY HORMONE REPLACEMENT THERAPY
IF I KNOW SOMEONE HAS A LOW BONE
DENSITY AND SOME WILL TRY TO
GIVE THE OPTIMAL THERAPY AND
WE'LL TRY TO NAIL IT DOWN TO
CANCER SURVIVORS AND AT 18 OR 20
SEE WHERE THEY ARE AND SEE IF
THEY NEED TO BE FOLLOWED BY A
SPECIALIST.
GREAT QUESTION.
>> DO YOU KNOW OF DATA ON
DIFFERENCES IN SEXUAL
DEVELOPMENT BESIDES INTERSEX
THAT AFFECT BONE DENSITY OR IS
THAT SOMETHING YOU'RE INTERESTED
IN?
>> DR. VERONICA GOMEZ LOBO, MY
COLLABORATOR, IS ACTIVELY
STUDIES FOR YEARS ANDROGEN
SENSITIVITY AN INTERSECT
DIAGNOSES AS YOU KNOW.
WHAT WITH KNOW SO FAR IS
RESISTANCE TO ANDROGENS LEADS TO
A LOWER THAN EXPECTED BONE
DENSITY BUT THERE'S A BIG
SPECTRUM OF PRESENTATION OF
THOSE ADOLESCENTS AND ADULTS.
SO SHE'S ALSO INTERESTED IN THE
INTERSEX DISORDERS AS WELL.
IT'S AN IMPORTANT QUESTION
BECAUSE I THINK THAT WORK WILL
INFORM WHAT WE ULTIMATELY DECIDE
AS CLINICAL RECOMMENDATIONS FOR
TRANS GENDER YOUTH AND ADULTS.
>> THANK YOU.
ABOUT POI PATIENTS AND THOSE
POST-TRANS PLANT OR CHEMOTHERAPY
WE GET ASKED ALL THE TIME
WHETHER WE EXPECT THE POI TO BE
PERMANENT AND HOW CAN WE ANSWER
THAT QUESTION AND HOW DOES
THAT -- SHOULD THAT GUIDE HOW WE
REPLACE HORMONE REPLACEMENT?
>> I APPRECIATE THE QUESTION.
IN MOST CASES IT'S PERMANENT OR
IT'S ON THE WAY TO BEING
PERMANENT.
CERTAINLY WATCHING ESTRADIOL AND
MH HORMONE CAN GIVE US
INFORMATION AND THERE WAS A TALK
LAST WEEK ON THAT LAST WEEK.
SO UNDERSTANDING THAT PROFILE
IT'S ASSUMING ULTIMATELY IT WILL
LEAD TO ESTROGEN DEFICIENCY AND
EMBRACING THAT EARLY AND
STARTING THERAPY I THINK THE
ANSWER'S GOING TO BE WE'RE GOING
TO START EARLIER AND EARLIER
MAYBE EVEN TINY DOSES OF
ESTRADIOL THAT DON'T IMPACT
GROWTH.
A LOT OF IT DEPENDS ON THE HIGH
OF THE CHILD AND THE PREDICTED
HEIGHT AS AN ENDOCRINOLOGIST AND
WE HAVE A LOT OF TO LEARN THERE
BUT I WORRY WE'RE STARTING
TREATMENT TOO LATE WHICH IS THEN
GOING TO IMPACT BONE HEALTH IN
AN ADVERSE WAY.
>> THANK YOU.
>> HI, I HAVE A QUESTION FROM
THE VIRTUAL AUDIENCE.
THANK YOU FOR SHARING YOUR WORK.
YOU MENTIONED REGARDING THE SKIN
TONE AND BONE MINERAL DENSITY
AND THE USE IN UNDER SERVED
AREAS AND HIM ENVIRONMENTAL
FACTORS, SUN EXPOSURE, TANNING,
AFFECT THE SKIN TONE ASSESSMENT?
>> GREAT QUESTION.
.
THERE'S A LOT EMBEDDED IN THAT
QUESTION AND I'M INTERESTED IN
THE SOCIAL DETERMINATES AND HOW
TO DISSECT OUT HOW THEY PLAY IN
AS WELL.
AS MY TEAM KNOWS WITH OUR
SPECTRA PHOTOMETER WE DO THE
UNDER ARM WE'RE MORE APT THE
OTHER SIDE OF OUR ARM WILL
CAPTURE SUN EXPOSURE BUT THAT
SURFACE SHOULD BE LESS EXPOSED
AND THERE'S LESS FRECKLING.
IT'S TYPICALLY VARIES LESS BY
SEASON.
HAVING SAID THAT, WE'LL BE
CAPTURING THE SEASON OF THE
YEAR.
WE'RE ALSO INTERESTED IN
THINKING ABOUT VITAMIN D
CUTANEOUS SYNTHESIS AND HOW THAT
PLAYS IN.
AFRICAN AMERICANS TEND TO HAVE
LOWER VITAMIN D LEVELS AND CAN
HAVE AN ADVERSE EFFECT ON BONE
SO THINKING ABOUT THAT IN THE
MIX AS WELL.
>> ANY OTHER QUESTIONS FROM THE
AUDIENCE?
DR. GORDON I WANT TO THANK YOU
FOR YOUR TIME.
WE APPRECIATE IT.
>> THANK YOU FOR COMING.