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>> OKAY, GOOD MORNING, 

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EVERYBODY.

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THIS IS PANKAJ QASBA.

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WE'LL START WITH OUR SYMPOSIUM 

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7.

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WE HAVE TWO, 7 AND 8.

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SO THIS PARTICULAR ONE IS 

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SYSTEMS BIOLOGY AND OTHER 

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APPROACHES OF SICKLE CELL 

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DISEASE.

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SO WE HAVE YOU'LL SEE 

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INTERESTING PRESENTATIONS AND 

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BIOLOGY APPROACHES FOR SICKLE 

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CELL AND SPLEEN DISEASE AND ALSO

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FOR GENE THERAPY CAMPAIGN FOR 

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SICKLE CELL FROM SCDAA AND ALSO 

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HEAR FROM ASH PEOPLE.

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AND ALSO INFLUENCE MUCH SEX 

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HORMONES AND INFLUENCE OF MENSES

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ON WOMEN AND METABOLIC 

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PROGRAMMING AND MACROPHAGES.

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THERE'S A WHOLE VARIETY OF 

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PRESENTATIONS AND PROTOCOLS FROM

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ALIGN TRIALS AND SYMPOSIUM 8 

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WILL BE ESSENTIALLY ALL UPDATES 

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FROM ASH AND FROM JULIE KANTER 

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ON THE NATIONAL ALLIANCE FOR 

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SICKLE CELL CENTERS AND CENSUS 

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RECOMMENDATIONS.

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LET'S GET STARTED.

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OUR FIRST PRESENTATION TODAY IS 

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AN INTEGRATED IN SILICO, IN 

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VIVO, EX VIVO FUNCTION OF SICKLE

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CELL DISEASE.

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THE FIRST PRESENTER IS PIERRE 

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BUFFET FROM PARIS.

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>> HELLO.

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I HOPE YOU CAN HEAR ME WELL.

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>> WE CAN.

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PLEASE GO AHEAD.

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>> FIRST I'M SO GRATEFUL
TO BE 

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WITH YOU EVEN IF IT'S SADLY NOT 

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IN PERSON.

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ORGANIZING THIS IN FRANCE IS NOT

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EASY IN SUMMER.

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I'LL START WITH THE STAGE IN 

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PLACE AND THEN GEORGE EM 

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KARNIADAKIS CAN TWO DEEPER INTO 

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IN VITRO AND IN SILICO 

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APPROACHES.

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LAST YEAR WE PRESENTED FROM 

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RESULTS OF CHILDREN WITH SICKLE 

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CELL DISEASE AND THIS YEAR I'LL 

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BROADEN THE SCOPE TO WHAT WE'VE 

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DONE IN MALARIA DO SEE HOW 

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THINGS DONE THERE WILL HELP US 

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UNDERSTAND AND TACKLE SICKLE 

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CELL DISEASE.

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AS YOU SEE THE SPLEEN IS A 

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FILTER FOR RED BLOOD CELLS AND 

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THEY ARE PLAY A ROLE SQUEEZING, 

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TRAPPING, JAMMING MANY RED 

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CELLS.

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LET ME TAKE YOU BACK TO 

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FILTRATION OF RED BLOOD CELLS.

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AS YOU THINK MOST OF YOU KNOW, 

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THE WHITE PULP IS FOR ADAPTIVE 

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IMMUNE RESPONSE.

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I WILL NOT TALK ABOUT THIS TODAY

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AND FOCUS ON RED PULP AND 

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FILTRATION OF CELLS.

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WHEN YOU LOOK AT THE MICROSCOPY 

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OF THE HUMAN SPLEEN THE SIZE OF 

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A FIST APPROXIMATELY YOU HAVE 

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MICROSCOPY.

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WHITE NODULES WHICH CORRESPOND 

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TO LYMPHOID NODULES AND THE RED 

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SPONGY TISSUE WHERE THE 

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FILTRATION OF RED CELLS TAKES 

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PLACE.

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IF WE LOOK AT THAT ON ELECTRONIC

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MICROSCOPY FIRST LOOK AT THE 

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DRAWING ON THE TOP LEFT OF THE 

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SLIDE.

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SO THIS IS A DRAWING OF THE 

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SMALL VEINS THAT ACT AS A 

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FILTER.

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ENDOTHELIAL CELLS COLORED IN 

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BLUE ARE ELONGATED AND THEY DO 

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NOT HAVE A BASAL MEMBRANE SO RED

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CELLS WILL GO FROM OUTSIDE TO 

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INSIDE YOU SEE THEM ENTERING AND

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SQUEEZING BETWEEN THE 

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ENDOTHELIAL CELLS AND SEE THE 

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EQUIVALENT ON THE TOP.

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THIS VERY TINY SQUEEZING OF RED 

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CELLS BETWEEN THE ENDO THELIAL 

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CELLS AND YOU SEE THE RED CELLS 

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SQUEEZING AND SEE THE INTENSE 

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DEFORM OF THE RED CELLS AS IT 

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GOES.

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THANK YOU FOR LAUNCHING THE 

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FIRST ANIMATION IN SILICO BY THE

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TEAM OF GEORGE EM KARNIADAKIS 

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WHICH IS THE ONLY WAY WE HAVE TO

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LOOK AT THIS MOVING BECAUSE WE 

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DON'T HAVE A TOOL TO LOOK AT 

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THAT IN VIVO IN HUMANS.

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I WAS NOT SURE I WOULD BE ABLE 

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TO LOOK AT THE VIDEOS SO THESE 

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ARE SNAPSHOTS.

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THE SECOND FILTRATION DEVICE.

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WE SAW THE MECHANICAL 

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DEFORMATION OF RED CELLS BUT THE

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RED PULP IS FULL OF MACROPHAGES 

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HERE IN ORANGE WHICH ARE GOING 

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TO BE ABLE TO RETAIN THE RED 

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CELLS.

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YOU CAN SEE THE PROCESS AND IF 

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YOU CAN LAUNCH THE VIDEO OR 

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SWITCH TO THE NEXT PICTURE.

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YOU SEE THE RED CELL CONTAINS 

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AND THE FOLLOW-UP IS GOING 

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EXPELLED AND THE RED CELL 

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CONTINUES IN PROCESS AND USED TO

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TEST SPLEEN FUNCTION.

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SO THE WAY WE STUDIED THAT WAS 

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BY LAUNCHING AN EX VIVO SPLEEN 

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DIFFUSION SYSTEM.

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YOU SEE THE SPLEEN IN THE BLUE 

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RESERVOIR THIS PUTS THE MARINE 

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IN CIRCULATION AND MAINTAINS ITS

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FUNCTION ABOUT TWO HOURS SO WE 

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TEST THE PITTING PROCESS.

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WE CAN SEE THE PITTING PROCESS 

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OCCURRING.

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THIS IS THE BLUE PICTURE AT THE 

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BOTTOM WITH THE BROWN BODY BEING

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EXPELLED AS THE RED CROSSES THE 

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SPLEEN FILTER.

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SO WE USED THE SEEM HOW IT WAS 

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ABLE TO BE INFECTED.

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TWO STAGES THE EARLY STAGE AND 

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THE RED VERSION ON THE TOP RIGHT

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AND THE MATURE FORMS BIGGER AND 

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THE MATURE FORMS WERE FULLY 

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RESTAI

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RESTAINS THIS IS TIME OF 

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DIFFUSION ON THE X AXIS AND HALF

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OF THEM WOULD BE RETAINED BY 

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MECHANICAL RETENTION.

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SOW IS THE SPLEEN IS SPLEEN IS 

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ABLE TO RETAIN AND DESIGN A WAY 

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TO FILTER RED CELLS IN A SPLEEN 

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LIKE WAY.

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TO DO SO WE USED THESE MIMICKING

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THE SIZE AND IF PUT POPULATION 

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OF RED CELLS CONTAINING A SUB 

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POPULATION OF INFECTED RED CELLS

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IF YOU COME WITH A DRUG THAT 

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FILTERS THIS ONLY THE INFECTED 

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RED CELLS IMPACTED BY THE DRUG 

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WILL BE RETAINED WHEREAS ALL THE

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OTHER RED CELLS WILL BE ABLE TO 

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FLOW THROUGH.

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SO THE MICRO FILTRATION IS THE 

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BEST MIMIC WE HAVE WE TESTED 

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THIS FOR HIGH THROUGHPUT 

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SCREENING AND WE USE THIS TO 

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SCREEN DRUGS AGAINST THE MALARIA

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PARASITES.

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SO WE COULD SCREEN ALMOST 13 

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DRUGS FROM A REPURPOSING LIBRARY

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CALLED REFRAME.

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WE GOT 112 ACTIVE DRUGS THAT 

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STIFFEN INFECTED RED CELLS, 76 

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WERE CONFIRMED AS ACTIVE AND 3 

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ARE VERY INTERESTING BECAUSE 

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THEY'RE ONLY ADMINISTERED AND 

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SAFE.

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THE CONCLUSION OF THE APPROACH 

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IS YOU CAN USE THE FILTRATION 

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SYSTEM THAT MIMICS THE SPLEEN TO

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FIND DRUGS SPECIFICALLY ACTIVE 

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ON SOME RED CELL SUBPOPULATION.

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AGAIN TO CONFIRM THE SYSTEM IS 

187
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REALLY MEANINGFUL IN TERMS OF 

188
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PATHOPHYSIOLOGY WE USED IT ON 

189
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OTHER RED CELL DISEASES AND THE 

190
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MOST WELL KNOWN IN TERMS OF 

191
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MECHANICAL RETENTION AND WHERE 

192
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RED CELLS BECOME SPHERICAL AND 

193
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LOSE SURFACE AREA AND THEY ARE 

194
00:11:17,194 --> 00:11:19,630
RETAINED UP STREAM AND ON THE Y 

195
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AXIS IS THE RETENTION RATE BY 

196
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THE SYSTEM AND RED CELLS ARE NOT

197
00:11:29,106 --> 00:11:34,445
RETAINED AND RED CELLS ARE 

198
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RETAIN AND THE CORRELATION ON 

199
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THE Y AXIS AND SURFACE AREA OF 

200
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RED CELLS THAT CORRESPOND ARE 

201
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STRONG CONFIRMING LONG STANDING 

202
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THEORY THAT SPHEROCYTE SHAPE 

203
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PREVENTS THE ABILITY TO CROSS 

204
00:11:57,635 --> 00:12:00,071
THE SPLEEN.

205
00:12:00,071 --> 00:12:08,312
THIS IS RED CELLS WHERE YOU SEE 

206
00:12:08,312 --> 00:12:13,284
THE DECREASE IN THE PERIPHERAL 

207
00:12:13,284 --> 00:12:15,286
BLOOD OF THE PATIENT WHEREAS 

208
00:12:15,286 --> 00:12:16,620
ACTIVITY INCREASES IN THE SPLEEN

209
00:12:16,620 --> 00:12:17,922
CONFIRMING THAT REALLY THE 

210
00:12:17,922 --> 00:12:19,256
SPLEEN IS RETAINING THE RED 

211
00:12:19,256 --> 00:12:27,732
CELLS.

212
00:12:27,732 --> 00:12:32,770
IN ERYTHROCYTOSIS IS THE WAY IT 

213
00:12:32,770 --> 00:12:39,210
CAUSES ANEMIA AND REMOVING THE 

214
00:12:39,210 --> 00:12:40,611
SPLEEN RELIEVES ANEMIA.

215
00:12:40,611 --> 00:12:43,614
THIS IS THE LANDSCAPE WE'VE BEEN

216
00:12:43,614 --> 00:12:46,150
USING TO CONSOLIDATE WHAT WE 

217
00:12:46,150 --> 00:12:47,618
WILL BE DOING AND WHAT WE ARE 

218
00:12:47,618 --> 00:12:49,120
DOING IN SICKLE CELL DISEASE.

219
00:12:49,120 --> 00:12:52,523
LAST POINT ON MALARIA, VERY 

220
00:12:52,523 --> 00:12:57,294
RECENTLY WE USED SPLENECTOMY OR 

221
00:12:57,294 --> 00:12:59,930
SAMPLES FROM SPLENECTOMIES IN 

222
00:12:59,930 --> 00:13:04,969
MALARIA ENDEMIC AREA OF 

223
00:13:04,969 --> 00:13:06,303
INDONESIA AND SHOWED THE SPLEEN 

224
00:13:06,303 --> 00:13:08,572
WEIGHT IS CORRELATE WITH THE 

225
00:13:08,572 --> 00:13:09,974
CONGESTION OF THE RED AND 

226
00:13:09,974 --> 00:13:13,110
CORRELATE WITH THE LEVEL OF 

227
00:13:13,110 --> 00:13:13,344
ANEMIA.

228
00:13:13,344 --> 00:13:15,980
CLEARLY IN CHRONIC MALARIA, 

229
00:13:15,980 --> 00:13:18,182
SPLEEN CONGESTION IS THE CAUSE 

230
00:13:18,182 --> 00:13:27,291
OF ANEMIA LIKE IN SPEROCYTOSIS 

231
00:13:27,291 --> 00:13:31,295
AND COMPLICATIONS IN SICKLE CELL

232
00:13:31,295 --> 00:13:31,996
DISEASE.

233
00:13:31,996 --> 00:13:34,632
JUST TO REMIND THE SPLEEN 

234
00:13:34,632 --> 00:13:35,466
CONGESTION IN SICKLE CELL 

235
00:13:35,466 --> 00:13:37,434
DISEASE AS SHOWN BY BRUCE AND 

236
00:13:37,434 --> 00:13:39,336
COLLEAGUES AND MANY OTHERS 

237
00:13:39,336 --> 00:13:43,174
BEFORE, THIS PROCESS IS DELAYED 

238
00:13:43,174 --> 00:13:47,778
BY THE USE OF HYDROXYUREA.

239
00:13:47,778 --> 00:13:49,947
SO THERE'S A CONNECTION BETWEEN 

240
00:13:49,947 --> 00:13:54,218
THE DIFFERENT COMPLICATIONS AND 

241
00:13:54,218 --> 00:13:55,319
SPLEEN CONGESTION IN SICKLE CELL

242
00:13:55,319 --> 00:13:59,323
DISEASE WITH CLEARLY ACUTE 

243
00:13:59,323 --> 00:14:03,294
CONGESTION CAUSING THE 

244
00:14:03,294 --> 00:14:03,961
SEQUESTRATION CRISIS AND CHRONIC

245
00:14:03,961 --> 00:14:07,865
CONGESTION WHICH CAUSES 

246
00:14:07,865 --> 00:14:09,033
INCREASED ANEMIA AND LOW GROWTH 

247
00:14:09,033 --> 00:14:16,173
IN THE CHILDREN.

248
00:14:16,173 --> 00:14:18,342
NOW TO THE RECENT RESULTS.

249
00:14:18,342 --> 00:14:23,280
WE ANALYZED IN PARALLEL TWO 

250
00:14:23,280 --> 00:14:26,350
COHORTS, 17 CHILDREN WITH SICKLE

251
00:14:26,350 --> 00:14:27,718
CELL DISEASE END UP GOING 

252
00:14:27,718 --> 00:14:33,424
SPLENECTOMY BECAUSE OF 

253
00:14:33,424 --> 00:14:35,292
SEQUESTRATION AND THERE WAS A 

254
00:14:35,292 --> 00:14:42,333
CONTROL GROUP OF 12 ADULT 

255
00:14:42,333 --> 00:14:52,843
SUBJECTS SPLEN ECTOMIZED AND 

256
00:14:54,445 --> 00:14:55,880
THEN COMPARED THEM BY FILTRATION

257
00:14:55,880 --> 00:15:02,786
AS I SHOWED YOU PREVIOUSLY.

258
00:15:02,786 --> 00:15:04,989
SO THE MAIN RESULT WE OBSERVED 

259
00:15:04,989 --> 00:15:08,492
IS IF YOU LOOK AT THE CONTROLS 

260
00:15:08,492 --> 00:15:11,428
THE PERIPHERAL RED CELLS ARE NOT

261
00:15:11,428 --> 00:15:13,430
RETURNING WHEREAS THERE'S 10% 

262
00:15:13,430 --> 00:15:17,334
MORE RETENTION IN THE SPLENIC 

263
00:15:17,334 --> 00:15:19,270
RED CELLS, THAT WAS EXPECTED THE

264
00:15:19,270 --> 00:15:20,871
SPLEEN IS RETAINING ALL THE RED 

265
00:15:20,871 --> 00:15:23,407
CELLS AND AS FOR SICKLE CELL 

266
00:15:23,407 --> 00:15:24,441
DISEASE THE DIFFERENCE BETWEEN 

267
00:15:24,441 --> 00:15:31,282
42 PERIPHERY AND SPLEEN IS 

268
00:15:31,282 --> 00:15:33,317
AROUND 35%.

269
00:15:33,317 --> 00:15:37,221
THREES A MARKED MECHANICAL 

270
00:15:37,221 --> 00:15:38,589
RETENTION OF RED CELLS IN THE 

271
00:15:38,589 --> 00:15:39,290
SPLEEN OF CHILDREN WITH SICKLE 

272
00:15:39,290 --> 00:15:40,291
CELL DISEASE.

273
00:15:40,291 --> 00:15:43,861
AND WHEN WE LOOK AT THE SHAPE OF

274
00:15:43,861 --> 00:15:47,298
THE RED CELLS IN THE SPLEEN, 

275
00:15:47,298 --> 00:15:56,807
THEY'RE ELONGATED OR SPHEROIC 

276
00:15:56,807 --> 00:15:59,143
AND CLEARLY THE HUMAN SPLEEN OF 

277
00:15:59,143 --> 00:16:01,445
CHILDREN WITH SPLENIC 

278
00:16:01,445 --> 00:16:03,280
COMPLICATION IS MECHANICALLY 

279
00:16:03,280 --> 00:16:05,149
RETAINING A LOT OF RED CELLS AND

280
00:16:05,149 --> 00:16:08,652
THIS IS CONTRIBUTOR OF THE 

281
00:16:08,652 --> 00:16:10,220
CONGESTION AND COMPLICATION.

282
00:16:10,220 --> 00:16:11,855
ONE LAST POINT OF THIS SLIDE 

283
00:16:11,855 --> 00:16:13,057
WHICH IS I THINK CRUCIAL WHEN 

284
00:16:13,057 --> 00:16:16,527
YOU LOOK AT THE RETENTION OF RED

285
00:16:16,527 --> 00:16:19,296
CELLS IN THE PERIPHERY 

286
00:16:19,296 --> 00:16:21,732
CIRCULATING RED CELLS IN THE 

287
00:16:21,732 --> 00:16:24,702
CONTROLS OR IN THE CHILDREN 

288
00:16:24,702 --> 00:16:25,502
THERE ARE IDENTICAL.

289
00:16:25,502 --> 00:16:29,840
MEANING THE SPLEEN IS STILL ABLE

290
00:16:29,840 --> 00:16:32,242
TO PREVENT STIFF RED CELLS TO 

291
00:16:32,242 --> 00:16:34,578
STAY IN CIRCULATION.

292
00:16:34,578 --> 00:16:35,713
PROBABLY PROTECTING THE 

293
00:16:35,713 --> 00:16:38,415
PERIPHERY FROM THE DAMAGES 

294
00:16:38,415 --> 00:16:40,084
CAUSED BY STIFF RED CELLS IN 

295
00:16:40,084 --> 00:16:50,294
CIRCULATION.

296
00:16:55,566 --> 00:16:57,401
TO SUMMARIZE THIS IN SICKLE CELL

297
00:16:57,401 --> 00:16:59,737
DISEASE IS IF WE CAN ACT ON 

298
00:16:59,737 --> 00:17:05,309
SQUEEZING AND DROPPING AND 

299
00:17:05,309 --> 00:17:09,646
RESTORE THE ABILITY WITH DRUGS 

300
00:17:09,646 --> 00:17:12,449
WE'LL BE ABLE TO INTERRUPT THE 

301
00:17:12,449 --> 00:17:13,450
PATH TOWARDS SPLENIC 

302
00:17:13,450 --> 00:17:14,685
COMPLICATION.

303
00:17:14,685 --> 00:17:17,588
THE IDEA IS YOU CAUSE JAMMING 

304
00:17:17,588 --> 00:17:21,692
AND THAT CAUSES SICKLING AND YOU

305
00:17:21,692 --> 00:17:24,094
HAVE THE CRISIS WHICH EVENTUALLY

306
00:17:24,094 --> 00:17:27,931
LEADS TO SPLEEN FIBROSIS AND 

307
00:17:27,931 --> 00:17:30,067
LOSS OF SPLEEN FUNCTION.

308
00:17:30,067 --> 00:17:33,103
NOW, IF USING THE DRUG YOU'LL BE

309
00:17:33,103 --> 00:17:35,906
ABLE TO RESTORE THE ABILITY OF 

310
00:17:35,906 --> 00:17:40,244
NORMAL RED CELLS THEN YOU WILL 

311
00:17:40,244 --> 00:17:42,980
PREVENT THE SPLENIC 

312
00:17:42,980 --> 00:17:43,313
COMPLICATIONS.

313
00:17:43,313 --> 00:17:46,450
TO DO SO WE WANT TO USE THE 

314
00:17:46,450 --> 00:17:49,453
SCREENING SYSTEM WE USE IN 

315
00:17:49,453 --> 00:17:52,823
MALARIA BUT INSTEAD OF USING 

316
00:17:52,823 --> 00:17:54,892
DRUGS THAT STIFFEN PARASITES WE 

317
00:17:54,892 --> 00:17:58,495
WANT DRUGS THAT WOULD HELP 

318
00:17:58,495 --> 00:18:03,033
RESTORE THE DEFORMABILITY OF RED

319
00:18:03,033 --> 00:18:03,233
CELLS.

320
00:18:03,233 --> 00:18:06,937
SO THE IDEA IS THAT BY SAVING 

321
00:18:06,937 --> 00:18:08,372
RED CELLS WE'RE ABLE TO SAVE THE

322
00:18:08,372 --> 00:18:12,843
SPLEEN TO MAINTAIN THE FUNCTION 

323
00:18:12,843 --> 00:18:16,480
AND TO BE MORE SCIENTIFIC THE 

324
00:18:16,480 --> 00:18:17,981
IDEA OF DRUG IS TO SAVE THE 

325
00:18:17,981 --> 00:18:21,285
SPLEEN AND PREVENT SPLENIC 

326
00:18:21,285 --> 00:18:22,086
COMPLICATION.

327
00:18:22,086 --> 00:18:25,622
AND CLEARLY THE REASON WHY IT 

328
00:18:25,622 --> 00:18:29,593
WOULD BE USEFUL TO MAINTAIN IS 

329
00:18:29,593 --> 00:18:30,828
TO PREVENT COMPLICATION AND 

330
00:18:30,828 --> 00:18:32,396
PREVENT THE LOSS OF SPLEEN 

331
00:18:32,396 --> 00:18:35,966
FUNCTION THAT IN LARGE COHORTS 

332
00:18:35,966 --> 00:18:37,401
ARE SHOWN TO BE DELETERIOUS IN 

333
00:18:37,401 --> 00:18:40,938
ALL PATIENTS.

334
00:18:40,938 --> 00:18:47,277
I WILL NOW HAND IT OVER TO 

335
00:18:47,277 --> 00:18:49,046
GEORGE EM KARNIADAKIS AND MING 

336
00:18:49,046 --> 00:18:50,948
DAO AND THANK YOU FOR INVITING 

337
00:18:50,948 --> 00:19:01,458
US TO THIS BEAUTIFUL MEETING.

338
00:19:09,867 --> 00:19:15,305
>> THANK YOU FOR INVITING
US 

339
00:19:15,305 --> 00:19:25,415
HERE.

340
00:19:47,004 --> 00:19:52,409
I'LL CONTINUE THE IDEA BY 

341
00:19:52,409 --> 00:20:01,251
PIERRE.

342
00:20:01,251 --> 00:20:03,320
THIS SLIDE WAS TRYING TO SHOW 

343
00:20:03,320 --> 00:20:09,026
THE REDUCED ABILITY THEIR RED 

344
00:20:09,026 --> 00:20:13,764
CELLS CAUSE MANY DISEASES 

345
00:20:13,764 --> 00:20:20,103
BECAUSE THE RED CELLS FROM TO GO

346
00:20:20,103 --> 00:20:21,872
THROUGH SMALL CAPILLARIES AND 

347
00:20:21,872 --> 00:20:23,740
HAVE TO GO THROUGH MANY CYCLES 

348
00:20:23,740 --> 00:20:30,347
SO DEFORMABILITY IS VERY 

349
00:20:30,347 --> 00:20:37,187
IMPORTANT.

350
00:20:37,187 --> 00:20:39,656
SO DURING THE OXYGEN DELIVERY 

351
00:20:39,656 --> 00:20:43,293
AND CARBON DIOXIDE TAKING FROM 

352
00:20:43,293 --> 00:20:47,864
THE TISSUE BACK TO LUNG, SO ALL 

353
00:20:47,864 --> 00:20:50,801
THESE GIVES RED CELL THE FATIGUE

354
00:20:50,801 --> 00:20:54,805
OF REPEATED HYPOXIA CYCLES.

355
00:20:54,805 --> 00:20:56,807
BOTH DEFORMABILITY LIKE 

356
00:20:56,807 --> 00:21:00,844
MECHANICAL CHALLENGE CYCLES 

357
00:21:00,844 --> 00:21:04,681
VERSUS HYPOXIA CYCLES ARE 

358
00:21:04,681 --> 00:21:06,783
FATIGUE AND THEY MAY DAMAGE THE 

359
00:21:06,783 --> 00:21:07,351
RED CELLS ESPECIALLY SICKLE 

360
00:21:07,351 --> 00:21:12,022
CELL.

361
00:21:12,022 --> 00:21:15,259
SO WE BUILT MICROFLUIDIC DEVICES

362
00:21:15,259 --> 00:21:18,028
THAT CAN DO UNDER CONTROLLED 

363
00:21:18,028 --> 00:21:20,464
HYPOXIA AND MEASURE 

364
00:21:20,464 --> 00:21:27,537
DEFORMABILITY IN SITU.

365
00:21:27,537 --> 00:21:31,508
SO WE HAVE A SINGLE CELL 

366
00:21:31,508 --> 00:21:32,709
MICROFLUIDIC BASED PLATFORM THAT

367
00:21:32,709 --> 00:21:39,283
CAN INDUCE SINGLE AND MULTIPLE 

368
00:21:39,283 --> 00:21:42,352
HYPOXIA CYCLES AND IMPOSE IN 

369
00:21:42,352 --> 00:21:51,228
SITU MECHANICAL LOAD AND TEST 

370
00:21:51,228 --> 00:21:54,665
RED CELL UNDER REPEATED HYPOXIA 

371
00:21:54,665 --> 00:21:56,633
AS WELL REPEATED MECHANICAL 

372
00:21:56,633 --> 00:22:05,208
CHALLENGES.

373
00:22:05,208 --> 00:22:07,944
WHERE HE STUDY SPLEEN ON THE 

374
00:22:07,944 --> 00:22:09,680
DEVICE.

375
00:22:09,680 --> 00:22:11,682
PIERRE ALREADY TOLD US THE 

376
00:22:11,682 --> 00:22:19,956
IMPORTANCE OF SPLIT RETENTION 

377
00:22:19,956 --> 00:22:28,598
AND THE MACROPHAGE SPEROCYTOSIS 

378
00:22:28,598 --> 00:22:31,635
BOTH ARE IMPORTANT BECAUSE 

379
00:22:31,635 --> 00:22:34,838
BECAUSE THEY NEED TO BE IN 

380
00:22:34,838 --> 00:22:35,572
BALANCE IN THE SPLEEN.

381
00:22:35,572 --> 00:22:38,642
IF THE ACCUMULATED RETENTION 

382
00:22:38,642 --> 00:22:41,411
WILL REMAIN THEN THE SPLEEN WILL

383
00:22:41,411 --> 00:22:44,348
BE CLOGGED AND BLOCKED.

384
00:22:44,348 --> 00:22:50,554
THAT WILL CAUSE SEQUESTRATION 

385
00:22:50,554 --> 00:22:51,321
PROBLEM OR CRISIS.

386
00:22:51,321 --> 00:22:57,994
SO ON THE TOP IS FROM PIERRE'S 

387
00:22:57,994 --> 00:23:00,197
PAPER THAT SHOWING IN THE SPLEEN

388
00:23:00,197 --> 00:23:04,000
YOU DO SEE CELLS SICKLE UNDER 

389
00:23:04,000 --> 00:23:04,634
HYPOXIA.

390
00:23:04,634 --> 00:23:09,005
BOTTOM IS THE IDEA THAT WE WILL 

391
00:23:09,005 --> 00:23:12,409
STUDY USING SEPARATED SO-CALLED 

392
00:23:12,409 --> 00:23:15,645
M CHIP AND S CHIP AND S CHIP 

393
00:23:15,645 --> 00:23:17,514
WILL PRESENT THE DEVICE THAT 

394
00:23:17,514 --> 00:23:23,687
MIMIC THE RETENTION FROM THE 

395
00:23:23,687 --> 00:23:25,489
SPLENIC SPLIT.

396
00:23:25,489 --> 00:23:27,791
FOR THE M FILTER OR M CHIP WE'RE

397
00:23:27,791 --> 00:23:33,163
TRYING TO STUDY THE RETENTION 

398
00:23:33,163 --> 00:23:36,400
AND PHAGOCYTOSIS OF THE 

399
00:23:36,400 --> 00:23:36,700
MACROPHAGES.

400
00:23:36,700 --> 00:23:42,305
THESE ARE THE PHYSICAL DEVICES 

401
00:23:42,305 --> 00:23:45,809
AS SHOWN THE DEVICE WITH THE 

402
00:23:45,809 --> 00:23:47,077
FILTER SLITS.

403
00:23:47,077 --> 00:23:49,980
THIS IS THE M CHIP WE'LL PUT 

404
00:23:49,980 --> 00:23:54,384
MACROPHAGES AND STUDY UNDER 

405
00:23:54,384 --> 00:23:55,519
HYPOXIA HOW THE PROCESS WILL BE 

406
00:23:55,519 --> 00:24:01,992
AFFECTED.

407
00:24:01,992 --> 00:24:04,694
SO THIS BLUE CURVE SHOWS THE 

408
00:24:04,694 --> 00:24:07,130
SICK

409
00:24:07,130 --> 00:24:08,465
SICKLED FRACTION AND THE BLUE 

410
00:24:08,465 --> 00:24:09,132
SHOWS THE OXYGEN.

411
00:24:09,132 --> 00:24:09,966
THE GREEN IS THE SICKLE 

412
00:24:09,966 --> 00:24:15,439
FRACTION.

413
00:24:15,439 --> 00:24:19,176
SO UNDER THIS HYPOXIA CYCLE 

414
00:24:19,176 --> 00:24:21,378
YOU'LL SEE THE SICKLE FRACTION 

415
00:24:21,378 --> 00:24:25,382
GOES UP GRADUALLY AND THEN IF WE

416
00:24:25,382 --> 00:24:27,284
PUT THE OXYGEN BACK IT WILL 

417
00:24:27,284 --> 00:24:29,853
UNSICKLE.

418
00:24:29,853 --> 00:24:31,822
SO THE SICKLE FRACTION WHEN THE 

419
00:24:31,822 --> 00:24:35,292
OXYGEN LEVEL GOES UP THE SICKLE 

420
00:24:35,292 --> 00:24:38,361
FRACTION WILL DROP.

421
00:24:38,361 --> 00:24:41,865
SO NEXT -- THIS IS THE 

422
00:24:41,865 --> 00:24:43,166
EXPERIMENT UNDER HYPOXIA AND 

423
00:24:43,166 --> 00:24:45,235
MORE AND MORE CELLS TRAP AND 

424
00:24:45,235 --> 00:24:52,542
WHEN YOU PUT BACK THE OXYGEN AND

425
00:24:52,542 --> 00:24:56,580
WE PLAY IT AGAIN AND THEN UNDER 

426
00:24:56,580 --> 00:24:58,815
HYPOXIA YOU SEE MORE AND MORE 

427
00:24:58,815 --> 00:25:01,117
CELLS GETTING TRAPPED.

428
00:25:01,117 --> 00:25:03,720
WHEN YOU PUT OXYGEN BACK THESE 

429
00:25:03,720 --> 00:25:09,493
ARE UNSICKLED AND DEFORMABLE 

430
00:25:09,493 --> 00:25:09,693
AGAIN.

431
00:25:09,693 --> 00:25:10,994
THESE ARE THE DIGITAL TWIN ON 

432
00:25:10,994 --> 00:25:11,728
THE BOTTOM GEORGE WILL SHOW 

433
00:25:11,728 --> 00:25:16,032
MORE.

434
00:25:16,032 --> 00:25:23,039
SO WE HAVE THE DEVICE TO DO 

435
00:25:23,039 --> 00:25:25,842
MULTIPLE CYCLES THE HYPOXIA 

436
00:25:25,842 --> 00:25:27,911
CYCLES AND THE TIME ON THE LEFT 

437
00:25:27,911 --> 00:25:29,846
VERSUS OXYGEN LEVEL.

438
00:25:29,846 --> 00:25:36,386
WE CAN CHANGE THE TIMING OR SO.

439
00:25:36,386 --> 00:25:39,289
WE CAN SEE THE SICKLE FRACTION 

440
00:25:39,289 --> 00:25:42,392
WILL CHANGE OVER TIME AND VERY 

441
00:25:42,392 --> 00:25:43,126
HETEROGENEOUS THOUGH THE BLOOD 

442
00:25:43,126 --> 00:25:49,966
IS FROM A SINGLE PATIENT.

443
00:25:49,966 --> 00:25:54,471
THERE'S HETEROGENEITY IN THE 

444
00:25:54,471 --> 00:25:56,940
PATIENT AND WE CAN TRACK USING 

445
00:25:56,940 --> 00:26:00,443
THE ASSAY AND THEN WE RECENTLY 

446
00:26:00,443 --> 00:26:04,748
BUILD A BASE AUTOMATED SICKLING 

447
00:26:04,748 --> 00:26:05,415
KINETIC MEASUREMENT.

448
00:26:05,415 --> 00:26:08,351
IT USED TO BE WE HAVE TO COUNT 

449
00:26:08,351 --> 00:26:08,618
MANUALLY.

450
00:26:08,618 --> 00:26:10,887
IT'S VERY PAINFUL BUT NOW WE 

451
00:26:10,887 --> 00:26:15,292
HAVE A METHOD TO DO IT 

452
00:26:15,292 --> 00:26:25,468
AUTOMATED.

453
00:26:27,704 --> 00:26:31,274
THE QUESTION IS WHAT IF WE USE 

454
00:26:31,274 --> 00:26:34,844
THE ANTI-SICKLING DRUG APPROVED 

455
00:26:34,844 --> 00:26:37,013
BY PFIZER TO DO THE STUDY AND 

456
00:26:37,013 --> 00:26:40,417
WITH DIFFERENT MODIFICATION THE 

457
00:26:40,417 --> 00:26:42,385
PERCENTAGE ON THE LEFT MEANS 

458
00:26:42,385 --> 00:26:47,457
MODIFICATION LEVEL MEANS THE 

459
00:26:47,457 --> 00:26:50,560
PERCENT OF HEMOGLOBIN MODIFIED 

460
00:26:50,560 --> 00:26:52,262
BY THE DRUG.

461
00:26:52,262 --> 00:26:54,931
THE MECHANISM IS TO INCREASE THE

462
00:26:54,931 --> 00:26:56,833
OXYGEN AFFINITY.

463
00:26:56,833 --> 00:26:58,501
ON THE RIGHT PANEL SHOWS THE 

464
00:26:58,501 --> 00:27:01,571
SICKLE FRACTION VERSUS TIME.

465
00:27:01,571 --> 00:27:11,281
THIS IS SICKLING KINETICS UNDER 

466
00:27:11,281 --> 00:27:16,052
OUR HYPOXIA AND ON THE BOTTOM IS

467
00:27:16,052 --> 00:27:17,020
THE PERCENT MODIFICATION YOU SEE

468
00:27:17,020 --> 00:27:20,991
ALMOST NO SICKLING AT ALL BUT IN

469
00:27:20,991 --> 00:27:24,828
BETWEEN 30% IS THE IDEAL 

470
00:27:24,828 --> 00:27:26,963
SITUATION ACHIEVED IN VIVO 

471
00:27:26,963 --> 00:27:31,267
BECAUSE YOU DON'T WANT THIS TO 

472
00:27:31,267 --> 00:27:34,237
BE THIS TO BE TOO MUCH BECAUSE 

473
00:27:34,237 --> 00:27:36,206
THE RED CELL WILL DELIVER TO 

474
00:27:36,206 --> 00:27:38,475
DELIVER OXYGEN IF THE AFFINITY 

475
00:27:38,475 --> 00:27:39,442
IS TOO MUCH.

476
00:27:39,442 --> 00:27:41,645
30% YOU STILL SEE SIGNIFICANT 

477
00:27:41,645 --> 00:27:47,250
REDUCTION OF SICKLE FRACTION 

478
00:27:47,250 --> 00:27:49,819
VERSUS TIME AND THAT'S THE 

479
00:27:49,819 --> 00:27:51,721
BEAUTY OF THIS ANTI-SICKLING 

480
00:27:51,721 --> 00:27:52,022
DRUG.

481
00:27:52,022 --> 00:27:56,559
SO IF THE QUESTION IS IF UNDER 

482
00:27:56,559 --> 00:27:57,661
REPEATED HYPOXIA CYCLES WHAT 

483
00:27:57,661 --> 00:27:59,262
HAPPENS?

484
00:27:59,262 --> 00:28:09,472
THESE ARE THE RESULTS.

485
00:28:09,472 --> 00:28:12,942
EACH IS TAKEN 20 SECONDS IN THE 

486
00:28:12,942 --> 00:28:16,513
HYPOXIA CYCLE AND IN THE X AXIS 

487
00:28:16,513 --> 00:28:19,282
YOU CAN SEE THERE'S SIGNIFICANT 

488
00:28:19,282 --> 00:28:21,117
REDUCTION OF SICKLED FRACTION 

489
00:28:21,117 --> 00:28:24,754
DUE TO DRUG TREATMENT.

490
00:28:24,754 --> 00:28:26,489
IT'S THE LOWER GREEN BARS AND 

491
00:28:26,489 --> 00:28:33,396
THE BLUE BARS ARE THE CONTROL.

492
00:28:33,396 --> 00:28:44,207
YOU CAN SEE THE VOXELOTOR HELPS 

493
00:28:44,207 --> 00:28:45,909
EARLY ON.

494
00:28:45,909 --> 00:28:48,244
THIS IS AT 40 SECONDS.

495
00:28:48,244 --> 00:28:51,981
SO THIS IS BOTH VERY EARLY STAGE

496
00:28:51,981 --> 00:28:55,418
YOU CAN SEE IT'S ALREADY 

497
00:28:55,418 --> 00:29:00,423
SIGNIFICANTLY REDUCED SICKLED 

498
00:29:00,423 --> 00:29:02,559
FRACTION AND THAT ALSO PERSISTS 

499
00:29:02,559 --> 00:29:06,362
WITH SOME MANY CYCLES UP TO 30 

500
00:29:06,362 --> 00:29:11,301
CYCLES WE DID THE REDUCTION HAS 

501
00:29:11,301 --> 00:29:15,271
BEEN VERY SIGNIFICANT.

502
00:29:15,271 --> 00:29:23,279
SO THE DRUG REALLY HELPS.

503
00:29:23,279 --> 00:29:28,518
OKAY.

504
00:29:28,518 --> 00:29:31,788
HERE IS A STUDY OF NORMAL RED 

505
00:29:31,788 --> 00:29:35,024
CELLS THROUGH THE SPLEEN SLITS.

506
00:29:35,024 --> 00:29:36,559
YOU CAN SEE THEY GO THROUGH 

507
00:29:36,559 --> 00:29:41,598
PRETTY EASILY.

508
00:29:41,598 --> 00:29:47,604
IF FOR SICKLE CELLS UNDER 

509
00:29:47,604 --> 00:29:52,208
NOMOXIA AND THEY'RE STIFFER YOU 

510
00:29:52,208 --> 00:29:54,244
CAN SEE THIGH HAVE BEEN BLOCKED 

511
00:29:54,244 --> 00:29:55,545
MORE THAN THAT ONE BUT STILL 

512
00:29:55,545 --> 00:30:06,089
MANY CELLS CAN GO THROUGH UNDER 

513
00:30:08,758 --> 00:30:12,762
NORMOXIA AND YOU CAN SEE THE 

514
00:30:12,762 --> 00:30:14,998
DEFORMED SICKLE CELLS WE'LL 

515
00:30:14,998 --> 00:30:20,203
BLOCK THE SLITS QUICKLY.

516
00:30:20,203 --> 00:30:26,176
THEY PROVIDES US HISTOLOGY OF 

517
00:30:26,176 --> 00:30:28,178
THEIR STUDY ON THESE.

518
00:30:28,178 --> 00:30:35,285
THIS IS THE NORMAL SPLEEN PLUS 

519
00:30:35,285 --> 00:30:37,420
HEALTHY RED CELLS COMPARED TO 

520
00:30:37,420 --> 00:30:40,790
THE NORMAL FLUIDIC DEVICE AND 

521
00:30:40,790 --> 00:30:44,227
WITH NORMAL THERE'S 

522
00:30:44,227 --> 00:30:47,297
SEQUESTRATION BUT NOT TOO MUCH 

523
00:30:47,297 --> 00:30:51,467
COMPARED TO SICKLE RED CELLS IN 

524
00:30:51,467 --> 00:30:57,473
THE SPLENIC CRISIS YOU SEE THE 

525
00:30:57,473 --> 00:30:59,275
SEQUESTRATION.

526
00:30:59,275 --> 00:31:09,786
THESE ARE CONFIRMED BOTH THE 

527
00:31:13,990 --> 00:31:14,691
PERCENT OF OPEN SLITS AND THE 

528
00:31:14,691 --> 00:31:18,428
RED IS UNDER THE DE-OXYGENATED 

529
00:31:18,428 --> 00:31:21,164
CONDITION AND BLOCKING THE 

530
00:31:21,164 --> 00:31:21,865
SPLITS QUICKLY.

531
00:31:21,865 --> 00:31:26,169
UNDER NORMOXIA IS NOT TOO BAD.

532
00:31:26,169 --> 00:31:29,539
THESE ARE THE HEALTHY CONTROLS.

533
00:31:29,539 --> 00:31:36,412
IF WE TAKE A SNAPSHOT AT 40 

534
00:31:36,412 --> 00:31:46,923
SECONDS XRAR THE CELLS IN THE 

535
00:31:48,992 --> 00:31:54,430
CONDITION UNDER HYPOXIA THERE'S 

536
00:31:54,430 --> 00:31:56,532
NO SIGNIFICANCE AND UNDER 

537
00:31:56,532 --> 00:31:58,935
CONDITIONS THERE'S HIGHER 

538
00:31:58,935 --> 00:31:59,269
RETENTION.

539
00:31:59,269 --> 00:32:01,304
THE OPEN SLIT NUMBER DROPS.

540
00:32:01,304 --> 00:32:04,741
THEN IF 234R HYPOXIA MOST OF 

541
00:32:04,741 --> 00:32:08,077
THESE -- MANY OF THE CELLS 

542
00:32:08,077 --> 00:32:11,981
SICKLE AND ARE VERY STIFF AND 

543
00:32:11,981 --> 00:32:22,525
CAN QUICKLY CLOG ALL THE SLITS.

544
00:32:22,759 --> 00:32:25,695
AND WHAT HAPPENS IF WE HAVE THE 

545
00:32:25,695 --> 00:32:30,433
HYPOXIA BLOCKED AND PUT BACK 

546
00:32:30,433 --> 00:32:40,877
OXYGEN WHAT HAPPENS NEXT.

547
00:32:45,515 --> 00:32:48,418
I BELIEVE WE WERE MIMICKING WHAT

548
00:32:48,418 --> 00:32:51,020
WAS HAPPENING IN A SPLENIC 

549
00:32:51,020 --> 00:32:51,654
CRISIS.

550
00:32:51,654 --> 00:32:53,923
DOCTORS PUT ON TRANSFUSION AND 

551
00:32:53,923 --> 00:32:57,126
THEN WE'LL GET THE OXYGEN IN THE

552
00:32:57,126 --> 00:32:58,995
SPLEEN AND THEN THAT'S WHAT 

553
00:32:58,995 --> 00:33:00,863
HAPPENS WE RELIEVE AT LEAST 

554
00:33:00,863 --> 00:33:11,074
TEMPORARILY.

555
00:33:20,249 --> 00:33:25,955
AND SITUATION FOR IN VIVO DRUG 

556
00:33:25,955 --> 00:33:32,395
TO PATIENTS.

557
00:33:32,395 --> 00:33:36,332
HYPOXIA BLOCKING THE SLITS 

558
00:33:36,332 --> 00:33:40,603
QUICKLY AND DROP TO ZERO QUICKLY

559
00:33:40,603 --> 00:33:45,975
BUT WITH VOXELOTOR TREATMENT THE

560
00:33:45,975 --> 00:33:48,444
HIGHER OPEN SLITS REMAIN OVER 

561
00:33:48,444 --> 00:33:48,745
TIME.

562
00:33:48,745 --> 00:33:55,051
THERE'S DEFINITELY VERY GOOD 

563
00:33:55,051 --> 00:33:59,288
RELIEF WITH THE VOXELOTOR 

564
00:33:59,288 --> 00:34:00,690
TREATMENT IN THE INITIAL 

565
00:34:00,690 --> 00:34:00,990
EXPERIMENT.

566
00:34:00,990 --> 00:34:06,462
SO THERE'S ANOTHER SIDE OF THE 

567
00:34:06,462 --> 00:34:07,230
STORY.

568
00:34:07,230 --> 00:34:14,537
WHAT HAPPENS WITH THE MACROPHAGE

569
00:34:14,537 --> 00:34:19,308
TO THE BALANCE AND ADHESION 

570
00:34:19,308 --> 00:34:20,309
VERSUS DIFFERENT CONDITIONS 

571
00:34:20,309 --> 00:34:28,017
UNDER NORMOXIA AND HYPOXIA AND 

572
00:34:28,017 --> 00:34:28,484
THE MACROPHAGE NEXT.

573
00:34:28,484 --> 00:34:35,158
YOU SEE THE VIDEO WE STUDIED THE

574
00:34:35,158 --> 00:34:35,425
ADHESION.

575
00:34:35,425 --> 00:34:37,493
THESE ARE ENHANCED FOR 

576
00:34:37,493 --> 00:34:47,937
ESPECIALLY ON THE HYPOXIA.

577
00:34:50,373 --> 00:34:53,509
THE MACROPHAGE VERSUS DIFFERENT 

578
00:34:53,509 --> 00:34:53,810
CONDITIONS.

579
00:34:53,810 --> 00:34:56,446
FOR HEALTHY CELLS UNDER 

580
00:34:56,446 --> 00:34:57,547
DEOXYGENATED CONDITIONS THERE'S 

581
00:34:57,547 --> 00:35:03,286
LITTLE TRACKING OF THE RED CELLS

582
00:35:03,286 --> 00:35:08,691
BUT UNDER FOR SICKLE CELLS YOU 

583
00:35:08,691 --> 00:35:10,159
HAVE A HIGHER NUMBER OF CELLS 

584
00:35:10,159 --> 00:35:15,298
BEING TRAPPED AND ADHERED BY THE

585
00:35:15,298 --> 00:35:15,598
MACROPHAGES.

586
00:35:15,598 --> 00:35:17,300
UNDER DEOXYGENATED THE ADHESION 

587
00:35:17,300 --> 00:35:27,844
IS MORE ENHANCED UNDER HYPOXIA.

588
00:35:45,394 --> 00:35:52,068
THEY'LL BE INGESTED BY THE 

589
00:35:52,068 --> 00:35:55,838
MACROPHAGES AND UNDER NORMOXIA 

590
00:35:55,838 --> 00:35:58,641
THEY'LL BE DIGESTED.

591
00:35:58,641 --> 00:36:00,042
THIS TAKES 12 MINUTES AND 7 

592
00:36:00,042 --> 00:36:01,644
MINUTES AND THIS IS A SICKLE 

593
00:36:01,644 --> 00:36:06,249
CELL UNDER HYPOXIA BEING 

594
00:36:06,249 --> 00:36:08,184
INGESTED AND THIS IS BEING 

595
00:36:08,184 --> 00:36:09,519
DIGESTED NOT TOO SLOW BUT IN 

596
00:36:09,519 --> 00:36:11,787
MANY CASES HALF THE SICKLE CELLS

597
00:36:11,787 --> 00:36:22,331
ARE EATEN OR INGESTED INSIDE THE

598
00:36:25,468 --> 00:36:27,970
SICKLE AND THEY REMAIN HARD TO 

599
00:36:27,970 --> 00:36:28,538
DIGEST.

600
00:36:28,538 --> 00:36:30,907
HALF STAY FOR HOURS NOT BEING 

601
00:36:30,907 --> 00:36:31,674
DIGESTED.

602
00:36:31,674 --> 00:36:34,844
SO THIS WE BELIEVE IS A 

603
00:36:34,844 --> 00:36:36,979
BOTTLENECK DUE TO MANY OF THESE 

604
00:36:36,979 --> 00:36:40,683
ARE NOT EASY TO BE DIGESTED 

605
00:36:40,683 --> 00:36:45,955
THOUGH THEY INTERNALIZE QUICKLY.

606
00:36:45,955 --> 00:36:47,690
THIS IS VERSUS DIFFERENT 

607
00:36:47,690 --> 00:36:49,825
CONDITIONS.

608
00:36:49,825 --> 00:36:52,628
SICKLED CELLS UNDER HIGH BOX YA 

609
00:36:52,628 --> 00:36:55,398
ARE INGESTED PRETTY QUICKLY.

610
00:36:55,398 --> 00:36:59,902
IF IT'S NOT SICKLED THEN THEY 

611
00:36:59,902 --> 00:37:06,242
PRETTY MUCH STAY SIMILAR AS 

612
00:37:06,242 --> 00:37:07,009
NORMOXIA CONDITION IF THE SICKLE

613
00:37:07,009 --> 00:37:09,879
CELLS ARE NOT SICKLED.

614
00:37:09,879 --> 00:37:18,454
SO SICKLED OR NOT SICKLED 

615
00:37:18,454 --> 00:37:21,958
THERE'S A DIFFERENCE IN THE SLOW

616
00:37:21,958 --> 00:37:30,466
DIGESTION WILL BE BOTTLENECK.

617
00:37:30,466 --> 00:37:33,436
SO WHEN THE INGESTED SICKLE CELL

618
00:37:33,436 --> 00:37:38,474
HAS BEEN TAKEN IN IT CAN SLOW 

619
00:37:38,474 --> 00:37:42,812
DIGESTION BUT IF WE PUT OXYGEN 

620
00:37:42,812 --> 00:37:43,312
BACK ON WHAT HAPPENS?

621
00:37:43,312 --> 00:37:46,916
YOU CAN SEE THIS IS A SICKLED 

622
00:37:46,916 --> 00:37:50,253
CELL UNSICKLED FIRST AND THEN 

623
00:37:50,253 --> 00:37:52,555
AFTER UNSICKLING IT CAN BE 

624
00:37:52,555 --> 00:37:56,959
DIGESTED RATHER QUICKLY.

625
00:37:56,959 --> 00:37:59,195
SO IF YOU HAVE A WAY TO UNSICKLE

626
00:37:59,195 --> 00:38:01,697
OR REDUCE THE SICKLING 

627
00:38:01,697 --> 00:38:03,266
PERCENTAGE IT WILL BE VERY 

628
00:38:03,266 --> 00:38:13,409
HELPFUL.

629
00:38:14,777 --> 00:38:17,079
SO HERE'S A SUMMARY SLIDE.

630
00:38:17,079 --> 00:38:21,083
WE BELIEVE FOR HEALTHY SUBJECTS 

631
00:38:21,083 --> 00:38:24,320
THE RETENTION VERSUS ELIMINATION

632
00:38:24,320 --> 00:38:26,822
RATE WILL BE RELATIVELY SMALL 

633
00:38:26,822 --> 00:38:31,994
AND THEY WILL KEEP BALANCE.

634
00:38:31,994 --> 00:38:33,396
UNDER STABLE SICKLE CELL DISEASE

635
00:38:33,396 --> 00:38:37,667
SITUATION BECAUSE OF THE LOWER 

636
00:38:37,667 --> 00:38:38,467
DEFORMABILITY IN SICKLE CELLS 

637
00:38:38,467 --> 00:38:42,071
THEY'LL HAVE MORE SICKLE CELLS 

638
00:38:42,071 --> 00:38:43,105
BEING TRAPPED.

639
00:38:43,105 --> 00:38:44,740
IF YOUR ELIMINATION BY 

640
00:38:44,740 --> 00:38:48,911
MACROPHAGES CAN KEEP UP THE PACE

641
00:38:48,911 --> 00:38:52,014
THEN TAKING A LOT OF THESE STIFF

642
00:38:52,014 --> 00:38:54,283
CELLS BUT THEY CAN -- YOU HAVE 

643
00:38:54,283 --> 00:38:57,353
ANEMIA BUT YOU MAY NOT HAVE MORE

644
00:38:57,353 --> 00:39:00,456
SYMPTOM LIKE IN LARGE SPLEEN.

645
00:39:00,456 --> 00:39:02,124
BUT HERE AS PIERRE WAS 

646
00:39:02,124 --> 00:39:04,293
MENTIONING, IF WE CAN INCREASE 

647
00:39:04,293 --> 00:39:06,329
THE DEFORMABILITY AND TOWARD THE

648
00:39:06,329 --> 00:39:11,300
HEALTHY CONDITION WE REALLY CAN 

649
00:39:11,300 --> 00:39:17,840
PROBABLY GO BACK TO THIS AND 

650
00:39:17,840 --> 00:39:20,343
PREVENT DAMAGING AND THE 

651
00:39:20,343 --> 00:39:22,178
HYPERSPLENIC CONDITION IS WHEN 

652
00:39:22,178 --> 00:39:26,882
THE RETENTION RATE IS HIGHER 

653
00:39:26,882 --> 00:39:32,288
THAN WHAT THE MACROPHAGES CAN 

654
00:39:32,288 --> 00:39:33,522
HANDLE YOU'LL HAVE A LARGE 

655
00:39:33,522 --> 00:39:35,491
SPLEEN THAT CAN BE A MORE SEVERE

656
00:39:35,491 --> 00:39:37,626
SITUATION.

657
00:39:37,626 --> 00:39:39,929
IF THIS SITUATION PERSISTS AND 

658
00:39:39,929 --> 00:39:41,530
SUSTAINED WITH THE HIGHER 

659
00:39:41,530 --> 00:39:44,667
RETENTION RATE THAN THE 

660
00:39:44,667 --> 00:39:47,303
MACROPHAGE THEN IT WILL HAVE A 

661
00:39:47,303 --> 00:39:49,004
DEEPENING HYPOXIA AND WILL HAVE 

662
00:39:49,004 --> 00:39:52,007
MORE SICKLED CELLS AND THE 

663
00:39:52,007 --> 00:39:56,345
SLOWER INGESTION WILL MAKE THE 

664
00:39:56,345 --> 00:40:03,519
WHOLE THING INTO A VICIOUS CYCLE

665
00:40:03,519 --> 00:40:06,522
AND IT COULD BE A 

666
00:40:06,522 --> 00:40:07,189
LIFE-THREATENING CRISIS.

667
00:40:07,189 --> 00:40:11,260
IN BOTH CASES IF WE HAVE REDUCED

668
00:40:11,260 --> 00:40:14,497
SICKLING PERCENTAGE AND ALSO WE 

669
00:40:14,497 --> 00:40:16,799
CAN SOFTEN THE CELLS WE CAN 

670
00:40:16,799 --> 00:40:18,334
ACTUALLY SOLVE THE PROBLEM FROM 

671
00:40:18,334 --> 00:40:18,868
THE BEGINNING.

672
00:40:18,868 --> 00:40:22,004
THAT'S WHY WE MAY HAVE A HOPE TO

673
00:40:22,004 --> 00:40:25,574
SAVE THE SPLEEN WITH THE DRUG.

674
00:40:25,574 --> 00:40:28,043
SO THAT'S MY SUMMARY SLIDE.

675
00:40:28,043 --> 00:40:30,479
SO WE ACTUALLY ESTABLISHED OUR 

676
00:40:30,479 --> 00:40:33,582
DRUG EFFICACY ASSAYS AND THIS 

677
00:40:33,582 --> 00:40:38,854
CAN ALSO DO THE TEST FOR US TO 

678
00:40:38,854 --> 00:40:41,123
TRY TO SCREEN DRUGS ACTUALLY.

679
00:40:41,123 --> 00:40:45,528
SO HOPEFULLY WITH OUR TESTS AND 

680
00:40:45,528 --> 00:40:47,296
ASSAYS AND UNDERSTANDING, THERE 

681
00:40:47,296 --> 00:40:49,298
MAY BE DRUGS THAT CAN BE USED TO

682
00:40:49,298 --> 00:40:51,267
SAVE THE SPLEEN.

683
00:40:51,267 --> 00:40:55,070
HOPEFULLY WE CAN ACHIEVE THAT IN

684
00:40:55,070 --> 00:40:56,705
WITH FUTURE STUDIES.

685
00:40:56,705 --> 00:41:06,482
THANK YOU, THAT'S ALL.

686
00:41:06,482 --> 00:41:11,620
>> THANK YOU VERY MUCH,
MING AND

687
00:41:11,620 --> 00:41:11,854
PIERRE.

688
00:41:11,854 --> 00:41:12,922
THANK YOU.

689
00:41:12,922 --> 00:41:19,195
SO HERE WE ARE IN ADDITION TO IN

690
00:41:19,195 --> 00:41:23,666
VITRO AND IN VIVO STUDY WE DO IN

691
00:41:23,666 --> 00:41:25,668
SILICO STUDIES AIMING TO BUILD 

692
00:41:25,668 --> 00:41:29,171
DIGITAL TWINS FOR ALL THE 

693
00:41:29,171 --> 00:41:30,840
RECEIVES IN SICKLE CELL ANEMIA 

694
00:41:30,840 --> 00:41:33,476
INCLUDING SUB CELLULAR 

695
00:41:33,476 --> 00:41:36,245
ALTERATION AND SUB CELLAR 

696
00:41:36,245 --> 00:41:42,351
MECHANICS AND DIGITAL TWINS AT 

697
00:41:42,351 --> 00:41:46,055
THE ORGAN LEVEL THE ARE RED 

698
00:41:46,055 --> 00:41:48,491
BLOOD CELLS LEVEL AND SHOW YOU 

699
00:41:48,491 --> 00:41:51,427
RESULTS OF THIS AND THE STUDIES 

700
00:41:51,427 --> 00:41:58,200
ARE BASED ON VERY SOPHISTICATED 

701
00:41:58,200 --> 00:42:02,905
MATHEMATICAL MODELS MOLECULAR 

702
00:42:02,905 --> 00:42:04,940
DYNAMICS WHERE ONE CAN DO THE 

703
00:42:04,940 --> 00:42:10,846
SAME MODELLING UNIVERSALLY FROM 

704
00:42:10,846 --> 00:42:13,449
ON DIFFERENT SCALES.

705
00:42:13,449 --> 00:42:15,284
SO YOU BUILD DIGITAL TWINS AND 

706
00:42:15,284 --> 00:42:16,218
CONTINUALLY LEARN AND YOU CAN 

707
00:42:16,218 --> 00:42:21,257
SEE SO FAR WE HAVE PLENTY OF 

708
00:42:21,257 --> 00:42:25,494
DATA USING THE MICROFLUIDIC 

709
00:42:25,494 --> 00:42:27,930
EXPERIMENTS AT MIT AND STUDIES 

710
00:42:27,930 --> 00:42:38,274
OF PIERRE IN FRANCE.

711
00:42:41,110 --> 00:42:44,446
SO EACH ONE PROCESS WE MODEL 

712
00:42:44,446 --> 00:42:48,350
FROM LEFT TO RIGHT THE 

713
00:42:48,350 --> 00:42:53,923
POLYMERIZATION AND RAD HEGES AND

714
00:42:53,923 --> 00:42:55,257
MACROPHAGES AND ALSO DIGITAL 

715
00:42:55,257 --> 00:42:58,861
TWIN OF MACROPHAGE AND PAPER IN 

716
00:42:58,861 --> 00:43:03,198
A JOURNAL ON THE COVER OF THIS 

717
00:43:03,198 --> 00:43:03,966
JOURNAL BECAUSE OF THE 

718
00:43:03,966 --> 00:43:06,335
COMPLEXITY IN DEVELOPING THE 

719
00:43:06,335 --> 00:43:10,906
MODELS AND MAKE THEM REALISTIC 

720
00:43:10,906 --> 00:43:12,641
AND DIGITAL TWINS TO CONTINUALLY

721
00:43:12,641 --> 00:43:14,443
LEARN.

722
00:43:14,443 --> 00:43:22,418
AS AN EXAMPLE, STARTING WITH THE

723
00:43:22,418 --> 00:43:23,319
SIN

724
00:43:23,319 --> 00:43:23,752
SIN

725
00:43:23,752 --> 00:43:27,456
SINGLE RED BLOOD CELL AND YOU 

726
00:43:27,456 --> 00:43:30,225
SEE THE FLUCTUATION AND TO CUT 

727
00:43:30,225 --> 00:43:32,661
THROUGH THE MIDDLE OF THE RED 

728
00:43:32,661 --> 00:43:34,330
BLOOD CELL YOU SEE THE 

729
00:43:34,330 --> 00:43:36,498
HEMOGLOBIN PARTICLES AND ON THE 

730
00:43:36,498 --> 00:43:41,870
BOTTOM YOU CAN SEE THE 

731
00:43:41,870 --> 00:43:43,272
POLYMERIZATION PROCESS CHA IS 

732
00:43:43,272 --> 00:43:47,409
GROWING IN THE MEMBRANE OF THE 

733
00:43:47,409 --> 00:43:50,212
RED BLOOD CELL SO THE MODELS 

734
00:43:50,212 --> 00:43:56,819
HAVE BEEN VALIDATED 10, 15 YEARS

735
00:43:56,819 --> 00:44:03,292
USING THE LAB AT MIT.

736
00:44:03,292 --> 00:44:06,328
HERE'S AT THE SUBCELLULAR LEVEL 

737
00:44:06,328 --> 00:44:09,999
INCLUDING IN THE MEMBRANE OF ALL

738
00:44:09,999 --> 00:44:10,866
THE PROTEINS INVOLVED IN THE 

739
00:44:10,866 --> 00:44:15,537
PROCESS AND IT'S A VERY DYNAMIC 

740
00:44:15,537 --> 00:44:18,140
AND FAST PROCESS THIS 

741
00:44:18,140 --> 00:44:19,475
POLYMERIZATION RECRUITING MORE 

742
00:44:19,475 --> 00:44:30,019
HEMOGLOBIN MOLECULES AND IT WAS 

743
00:44:30,219 --> 00:44:32,054
AN EXERCISE OF DEVELOPING 

744
00:44:32,054 --> 00:44:33,789
METHODS ON THE FLY AND IT'S A 

745
00:44:33,789 --> 00:44:35,090
DYNAMIC PROCESS WHICH WE DID A 

746
00:44:35,090 --> 00:44:44,867
FEW YEARS AGO.

747
00:44:44,867 --> 00:44:55,411
THIS IS OXYGENATION AND YOU CAN 

748
00:45:12,594 --> 00:45:17,132
SEE THE DIGITAL TWINS TOTALLY 

749
00:45:17,132 --> 00:45:22,037
MIMIC THE EXPERIMENT.

750
00:45:22,037 --> 00:45:23,906
YOU CAN TRAIN THE RED CELLS TO 

751
00:45:23,906 --> 00:45:26,208
BE SUBJECT TO THE FORMATION 

752
00:45:26,208 --> 00:45:31,346
ACCORDING TO THE LEVEL OF 

753
00:45:31,346 --> 00:45:35,284
OXYGENATION AND WITH DATA WE 

754
00:45:35,284 --> 00:45:45,794
HAVE THE DIGITAL TWINS OF THE 

755
00:45:46,495 --> 00:45:46,662
REALITY.

756
00:45:46,662 --> 00:45:54,536
AND THESE ARE THE SLITS OF THE S

757
00:45:54,536 --> 00:46:01,577
KWHIP AND  -- S CHIP OF THE 

758
00:46:01,577 --> 00:46:04,046
DIGITAL TWIN AND MEASURE THE 

759
00:46:04,046 --> 00:46:07,282
VELOCITY AND HUNDREDS OF 

760
00:46:07,282 --> 00:46:09,151
MICROBES PER SECOND AND 

761
00:46:09,151 --> 00:46:10,853
CONSIDERED GOOD AGREEMENT AFTER 

762
00:46:10,853 --> 00:46:13,288
THEY'VE BEEN CALIBRATED AFTER 

763
00:46:13,288 --> 00:46:15,691
MANY MANY YEARS OF THIS TYPE OF 

764
00:46:15,691 --> 00:46:17,526
WORK.

765
00:46:17,526 --> 00:46:20,529
AND HERE THE SLIDE SHOWED ALL 

766
00:46:20,529 --> 00:46:23,565
THREE INTEGRATION WE HAVE AS THE

767
00:46:23,565 --> 00:46:28,570
TITLE OF THE TALK YOU SEE THE 

768
00:46:28,570 --> 00:46:31,673
IMAGE WHERE WE SEE HOW CLOUDED 

769
00:46:31,673 --> 00:46:36,812
IS THE SLITS AND THIS IS 

770
00:46:36,812 --> 00:46:37,880
REPEATED IN VITRO WHERE WE CAN 

771
00:46:37,880 --> 00:46:43,285
SEE ACCUMULATION OF THE PRESSURE

772
00:46:43,285 --> 00:46:48,557
OF RED BLOOD CELLS IN FRONT OF 

773
00:46:48,557 --> 00:46:51,293
THE SLITS AND THIS IS THE 

774
00:46:51,293 --> 00:46:53,529
INTEGRATION HOW WE BUILD THIS 

775
00:46:53,529 --> 00:46:57,399
BECAUSE IT'S BASED ON BOTH IN 

776
00:46:57,399 --> 00:47:07,242
VIVO AND IN VITRO IN DATA.

777
00:47:07,242 --> 00:47:11,547
AND THE COMPLICATED INTERACTION 

778
00:47:11,547 --> 00:47:22,090
AND YOU CAN CLICK ONCE A COMPLEX

779
00:47:23,225 --> 00:47:27,596
INTERACTION BETWEEN THE 

780
00:47:27,596 --> 00:47:28,831
MACROPHAGES AND THE RED BLOOD 

781
00:47:28,831 --> 00:47:29,031
CELLS.

782
00:47:29,031 --> 00:47:33,335
YOU CAN SEE THEY COME IN 

783
00:47:33,335 --> 00:47:37,573
DIFFERENT SHAPES AND SOME ADHERE

784
00:47:37,573 --> 00:47:40,042
AND IT'S A COMPLEX ADHESION AND 

785
00:47:40,042 --> 00:47:43,612
COMPLEX PROCESS BUT WE TRY TO 

786
00:47:43,612 --> 00:47:46,148
MIMIC AND QUANTIFY WITH 

787
00:47:46,148 --> 00:47:46,782
COMPARISONS AND EXPERIMENTS IN 

788
00:47:46,782 --> 00:47:51,954
THE PAPER.

789
00:47:51,954 --> 00:47:56,592
SO THE NEXT PROCESS FOR 

790
00:47:56,592 --> 00:47:59,261
MACROPHAGES HOW WE SIMULATE 

791
00:47:59,261 --> 00:48:00,529
ENGULFMENT.

792
00:48:00,529 --> 00:48:07,369
AND HERE WE HAVE EXPERIMENTS 

793
00:48:07,369 --> 00:48:17,880
WITH MICROBEADS TO MIMIC OUR 

794
00:48:21,917 --> 00:48:22,184
CY

795
00:48:22,184 --> 00:48:24,553
CYTOSIS AND THEY HAVE AN ACTIVE 

796
00:48:24,553 --> 00:48:31,827
AREA THAT GOES AND CAPTURES THE 

797
00:48:31,827 --> 00:48:32,094
BEADS.

798
00:48:32,094 --> 00:48:33,528
MOST IMPORTANTLY AND THAT'S WHY 

799
00:48:33,528 --> 00:48:34,796
THE SIMULATION IS HELPFUL.

800
00:48:34,796 --> 00:48:37,933
WE CAN QUANTIFY THE ADHESION 

801
00:48:37,933 --> 00:48:38,533
ENERGY REQUIRED.

802
00:48:38,533 --> 00:48:44,072
THAT'S SOMETHING THAT CANNOT BE 

803
00:48:44,072 --> 00:48:46,942
DONE FOR FULL OR PARTIAL 

804
00:48:46,942 --> 00:48:52,514
ENGULFMENT IN THE BOTTOM LEFT.

805
00:48:52,514 --> 00:49:03,058
IF YOU CAN CLICK A COUPLE TIMES.

806
00:49:05,193 --> 00:49:10,299
 WHAT YOU SEE IS RA PLYING THE 

807
00:49:10,299 --> 00:49:15,304
MICROBEADS TO DELEGATED SHAPES 

808
00:49:15,304 --> 00:49:23,278
THE ONES THAT STAY BEHIND AND 

809
00:49:23,278 --> 00:49:26,081
AND WE MIMIC THERE'S EXPERIMENTS

810
00:49:26,081 --> 00:49:30,552
AT THE LAB AT MIT AND UNDER 

811
00:49:30,552 --> 00:49:32,487
NORMOXIA THEY'RE DEFORMABLE AND 

812
00:49:32,487 --> 00:49:36,191
UNDER GO DRASTIC DEFORMATION AND

813
00:49:36,191 --> 00:49:38,060
BECOME SMALLER BEFORE BEING 

814
00:49:38,060 --> 00:49:43,899
ENGULFED IN CONTRAST UNDER 

815
00:49:43,899 --> 00:49:52,274
HYPOXIA DURING THE PROCESS OF 

816
00:49:52,274 --> 00:49:52,607
SI

817
00:49:52,607 --> 00:49:54,576
SITOSIS IS DIFFERENT AND WE'RE 

818
00:49:54,576 --> 00:49:55,944
ABLE TO QUANTIFY THAT.

819
00:49:55,944 --> 00:49:56,011
 

820
00:50:00,983 --> 00:50:02,818
SO HERE'S A QUANTIFICATION I WAS

821
00:50:02,818 --> 00:50:04,720
TALKING ABOUT.

822
00:50:04,720 --> 00:50:10,225
WE SEE ON THE LEFT WE NOW HAVE 

823
00:50:10,225 --> 00:50:13,061
THE EXPERIMENTS AND ADHESIVE 

824
00:50:13,061 --> 00:50:14,963
STRESS AND THE AMOUNT REQUIRED 

825
00:50:14,963 --> 00:50:18,767
FOR FULL ENGULFMENT AND WE SEE 

826
00:50:18,767 --> 00:50:22,771
HERE ON THE LEFT YOU CONSIDER 

827
00:50:22,771 --> 00:50:25,007
THE FLEXIBLE IS THE ADHESIVE 

828
00:50:25,007 --> 00:50:30,579
STRESS IS THE LARGEST OPPOSED TO

829
00:50:30,579 --> 00:50:35,050
ELONGATED AND RIGID WHICH CAN BE

830
00:50:35,050 --> 00:50:35,550
ENGULFED FASTER.

831
00:50:35,550 --> 00:50:39,287
ON THE RIGHT WE GO BACK TO 

832
00:50:39,287 --> 00:50:43,258
SOMETHING THAT PIERRE TALKED 

833
00:50:43,258 --> 00:50:45,227
ABOUT SO WE HAVE THE RED BLOOD 

834
00:50:45,227 --> 00:50:48,063
CELLS GOING THROUGH THE SPLIT 

835
00:50:48,063 --> 00:50:51,900
BUT AS THEY BECOME MORE 

836
00:50:51,900 --> 00:50:57,139
SPHERICAL WE SEE THE RETENTION 

837
00:50:57,139 --> 00:51:00,742
RATE INCREASES.

838
00:51:00,742 --> 00:51:04,913
CORRESPONDINGLY THE SAME SURFACE

839
00:51:04,913 --> 00:51:12,454
AREA OF VOLUME WILL BE A 

840
00:51:12,454 --> 00:51:15,290
DETERMINATE OF PARTIAL OR FULL 

841
00:51:15,290 --> 00:51:15,590
ENGULFMENT.

842
00:51:15,590 --> 00:51:19,694
HERE WE SHOW RED BLOOD CELLS AND

843
00:51:19,694 --> 00:51:21,496
WE'RE ABLE TO COMPARE THE 

844
00:51:21,496 --> 00:51:23,765
CONTROLS TO QUANTIFY EXACTLY THE

845
00:51:23,765 --> 00:51:26,401
LEVEL OF ADHESIVE STRESS AND THE

846
00:51:26,401 --> 00:51:35,277
SURFACE AREA WHICH IS A DOUBLE 

847
00:51:35,277 --> 00:51:41,316
DETERMINATANT -- DETERMINATE FOR

848
00:51:41,316 --> 00:51:44,686
THE MACROPHAGES AND THIS 

849
00:51:44,686 --> 00:51:45,287
QUANTIFIES THE PROCESS.

850
00:51:45,287 --> 00:51:50,959
HOWEVER, THE MACROPHAGES WE 

851
00:51:50,959 --> 00:51:53,361
SHOWED HOW WE BUILD MACROPHAGES 

852
00:51:53,361 --> 00:51:57,232
THAT MIMIC THE REAL MACROPHAGES 

853
00:51:57,232 --> 00:52:01,503
BUT THEY ARE BASED ON 

854
00:52:01,503 --> 00:52:03,271
MACROPHAGES SHOWN IN THE UPPER 

855
00:52:03,271 --> 00:52:04,739
RIGHT PICTURE IT'S VERY VIVID.

856
00:52:04,739 --> 00:52:08,343
THE QUESTION IS CAN WE BUILD A 

857
00:52:08,343 --> 00:52:14,382
TRUE DIGITAL TWIN OF THAT WITH 

858
00:52:14,382 --> 00:52:17,119
WHICH HAS PSEUDOPODS INSIDE THE 

859
00:52:17,119 --> 00:52:20,489
CELL AND RANDOMLY OR WHEN THEY 

860
00:52:20,489 --> 00:52:22,324
TRIGGER THEY PROTRUDE.

861
00:52:22,324 --> 00:52:26,761
FOR US THAT WAS THE LATEST WHERE

862
00:52:26,761 --> 00:52:30,699
WE WERE ABLE TO SHOW WE CAN 

863
00:52:30,699 --> 00:52:32,634
BUILD THIS TYPE OF PSEUDOPODS.

864
00:52:32,634 --> 00:52:37,672
HERE WE HAVE A MODEL WHERE THE 

865
00:52:37,672 --> 00:52:40,675
MEMBRANE AND THE CYTOSKELETON 

866
00:52:40,675 --> 00:52:42,110
ARE SHOWN DIFFERENTLY AND IT 

867
00:52:42,110 --> 00:52:47,549
PLAYS AN ACTIVE ROLE IN THE 

868
00:52:47,549 --> 00:52:51,653
PSEUDOPODS AND IF YOU CLICK 

869
00:52:51,653 --> 00:52:54,923
YOU'LL SEE HERE HOW YOU HAVE 

870
00:52:54,923 --> 00:52:59,427
THIS PSEUDO POD AND SEE THE BLUE

871
00:52:59,427 --> 00:53:01,663
DOTS FROM THE CYTOSKELETON RAP 

872
00:53:01,663 --> 00:53:07,202
TOURS AND ENGULFS THE RED BLOOD 

873
00:53:07,202 --> 00:53:11,640
CELLS AND AS IT GOES INSIDE FOR 

874
00:53:11,640 --> 00:53:12,440
DIGESTION THERE'S A 

875
00:53:12,440 --> 00:53:19,614
RECONNECTION, A LINKING OF THE 

876
00:53:19,614 --> 00:53:21,550
FILAMENTS OF THE MACROPHAGE.

877
00:53:21,550 --> 00:53:23,752
A COMPLEX BUT WE'RE AT THE POINT

878
00:53:23,752 --> 00:53:25,287
WHERE WE HAVE A TRUE DIGITAL 

879
00:53:25,287 --> 00:53:27,422
TWIN OF THE MACROPHAGE FOR THE 

880
00:53:27,422 --> 00:53:28,757
FIRST TIME.

881
00:53:28,757 --> 00:53:30,592
THIS IS ALSO SHOWN HERE IN THE 

882
00:53:30,592 --> 00:53:39,668
NICE VIDEO.

883
00:53:39,668 --> 00:53:42,037
FROM WORK FROM ISRAEL SHOWING 

884
00:53:42,037 --> 00:53:47,876
THE PSEUDO PODS ARE ISSUING THIS

885
00:53:47,876 --> 00:53:49,678
AND RANDOM PROTUGS OF PSEUDO 

886
00:53:49,678 --> 00:53:51,279
PODS WE WERE TRYING TO MIMIC IN 

887
00:53:51,279 --> 00:54:01,823
THE DIGITAL TWIN FINALLY WE HAVE

888
00:54:02,023 --> 00:54:06,595
A DIGITAL TWIN OF THE SPLEEN 

889
00:54:06,595 --> 00:54:12,267
FROM PIERRE'S GROUP IN FRANCE WE

890
00:54:12,267 --> 00:54:20,775
TRIED TO HAVE A GEOMETRICALLY 

891
00:54:20,775 --> 00:54:21,810
SIMILAR DIGITAL TWIN AND WE 

892
00:54:21,810 --> 00:54:23,378
CHECKED THE GEOMETRY.

893
00:54:23,378 --> 00:54:28,350
WE OF COURSE WANT TO SIMULATE 

894
00:54:28,350 --> 00:54:30,085
THE CONDITIONS OF WHICH RED 

895
00:54:30,085 --> 00:54:32,087
CELLS GO THROUGH AND RETAVEND 

896
00:54:32,087 --> 00:54:37,359
AND CAUGHT BY THE MACROPHAGES.

897
00:54:37,359 --> 00:54:39,294
-- RETAINED AND CAUGHT BY THE 

898
00:54:39,294 --> 00:54:49,504
MACROPHAGES.

899
00:54:50,605 --> 00:54:57,846
WE HAVE THE MACROPHAGE IN FRONT 

900
00:54:57,846 --> 00:55:06,621
OF THE SLITS.

901
00:55:06,621 --> 00:55:17,165
AND HERE THERE'S A POINT YOU CAN

902
00:55:18,667 --> 00:55:28,043
CLICK THE MACROPHAGES CAPTURE 

903
00:55:28,043 --> 00:55:35,283
WHAT IS BLOCKED BY THE SLIT.

904
00:55:35,283 --> 00:55:41,923
IN THE MIDDLE WE CAPTURE THE 

905
00:55:41,923 --> 00:55:44,659
CELLS AND SLITS IN CONTRAST YOU 

906
00:55:44,659 --> 00:55:47,128
HAVE A HEALTHY FLOW ON THE RIGHT

907
00:55:47,128 --> 00:55:48,863
YOU SEE THE RED CELLS GO THROUGH

908
00:55:48,863 --> 00:55:51,766
AND THE RIGHT DIGITAL TWIN.

909
00:55:51,766 --> 00:56:02,310
THE LAST ONE WE CAN QUANTIFY AND

910
00:56:09,584 --> 00:56:13,655
WHAT WE HAVE HERE IS THE EFFECT 

911
00:56:13,655 --> 00:56:18,560
OF THE CHANGES.

912
00:56:18,560 --> 00:56:26,501
SO WE HAVE A TOTAL SYSTEMATIC 

913
00:56:26,501 --> 00:56:30,605
COMPARISON WITH EXPERIMENTAL 

914
00:56:30,605 --> 00:56:35,110
DATA OF DIFFERENT LEVELS OF RBC 

915
00:56:35,110 --> 00:56:37,445
AND IN SUMMARY WE HAVE PRESENTED

916
00:56:37,445 --> 00:56:42,150
AN INTEGRATED IN VIVO, IN VITRO,

917
00:56:42,150 --> 00:56:44,753
IN SILICO STUDY AND GOING 

918
00:56:44,753 --> 00:56:47,255
FORWARD WE'RE LOOKING HOW TO 

919
00:56:47,255 --> 00:56:49,157
SAVE THE SPLEEN AS PIERRE AND 

920
00:56:49,157 --> 00:56:54,596
MING TALKED ABOUT AND WHAT DRUGS

921
00:56:54,596 --> 00:56:59,801
IN PARTICULAR OF THE RECENT 

922
00:56:59,801 --> 00:57:04,439
DRUGS WOULD BE MOST EFFECTIVE 

923
00:57:04,439 --> 00:57:06,941
AND USING BOTH IN VITRO AND IN 

924
00:57:06,941 --> 00:57:09,477
SILICO EXPERIMENTS WE CAN 

925
00:57:09,477 --> 00:57:11,179
DISSECT THE MECHANISMS BY WHICH 

926
00:57:11,179 --> 00:57:11,513
THIS HAPPENED.

927
00:57:11,513 --> 00:57:21,856
THANK YOU VERY MUCH.

928
00:57:33,568 --> 00:57:37,071
YOU TOOK US FROM VALIDATING IN 

929
00:57:37,071 --> 00:57:38,673
THE LAB IN THE SPLEEN AND MOVING

930
00:57:38,673 --> 00:57:41,709
AT THE MICROFLUIDIC LEVEL AND 

931
00:57:41,709 --> 00:57:44,946
DOING COMPLEX PATH TO CREATE 

932
00:57:44,946 --> 00:57:46,514
BEAUTIFUL DIGITAL TWINS TO 

933
00:57:46,514 --> 00:57:51,820
VALIDATE YOUR EXPERIMENTS.

934
00:57:51,820 --> 00:58:01,996
QUESTIONS?

935
00:58:10,872 --> 00:58:12,474
>> IN THE PAST THEY TALKED
ABOUT

936
00:58:12,474 --> 00:58:16,277
TIME AND HAVE YOU LOOKED AT THE 

937
00:58:16,277 --> 00:58:18,746
TIME IN YOUR EX VIVO CONDITIONS 

938
00:58:18,746 --> 00:58:21,149
AND ARE YOU SUGGESTING IT 

939
00:58:21,149 --> 00:58:24,619
DOESN'T MATTER WHETHER THE 

940
00:58:24,619 --> 00:58:31,426
SICKLE CELLS ARE REVERSIBLY OR 

941
00:58:31,426 --> 00:58:33,828
NOT REVERSIBLE STILL 

942
00:58:33,828 --> 00:58:34,162
CONTRIBUTING?

943
00:58:34,162 --> 00:58:35,897
>> WE LOOKED AT THIS A
LITTLE 

944
00:58:35,897 --> 00:58:36,064
BIT.

945
00:58:36,064 --> 00:58:42,604
IN FACT THE SO-CALLED 

946
00:58:42,604 --> 00:58:46,608
IRREVERSIBLE SICKLE CELL THE 

947
00:58:46,608 --> 00:58:48,510
SICKLE HEMOGLOBIN STILL 

948
00:58:48,510 --> 00:58:50,979
POLYMERIZE AND UNPOLYMERIZE 

949
00:58:50,979 --> 00:58:55,416
DURING THE HYPOXIA AND NORMOXIA 

950
00:58:55,416 --> 00:58:57,185
CYCLES SO BECOME MORE STIFFER 

951
00:58:57,185 --> 00:59:00,922
EVEN THE IACs BECOME STIFFER 

952
00:59:00,922 --> 00:59:02,657
DURING UNDER HYPOXIA.

953
00:59:02,657 --> 00:59:08,096
THE IACs BY ITSELF START AS MORE

954
00:59:08,096 --> 00:59:10,465
RIGID THAN THE OTHERS AND BY 

955
00:59:10,465 --> 00:59:12,534
THEMSELVES MAY NOT PASS THE 

956
00:59:12,534 --> 00:59:16,271
SLITS THAT ARE EASIER TO BE 

957
00:59:16,271 --> 00:59:18,106
ELIMINATED BUT OTHERWISE THEY 

958
00:59:18,106 --> 00:59:19,641
STILL GO THROUGH IN OUR IN VITRO

959
00:59:19,641 --> 00:59:23,278
STUDY THEY STILL GO THROUGH THE 

960
00:59:23,278 --> 00:59:33,688
POLYMERIZATION PROCESS.

961
00:59:47,368 --> 00:59:48,970
>> WHAT IS THE
ADMINISTRATION OF

962
00:59:48,970 --> 00:59:49,203
OXYGEN?

963
00:59:49,203 --> 00:59:50,471
>> MAYBE THE ANSWER CAN BE

964
00:59:50,471 --> 01:00:00,281
ANSWERED BY PIERRE.

965
01:00:00,281 --> 01:00:02,116
>> GOOD QUESTION.

966
01:00:02,116 --> 01:00:03,785
THE ANSWER AT THE MOMENT IS WE 

967
01:00:03,785 --> 01:00:04,719
DON'T KNOW.

968
01:00:04,719 --> 01:00:06,220
WE DON'T HAVE DIRECT 

969
01:00:06,220 --> 01:00:07,589
MEASUREMENTS IN THE COURSE OF 

970
01:00:07,589 --> 01:00:11,793
THE LEVEL OF OXYGEN.

971
01:00:11,793 --> 01:00:15,730
WE DON'T KNOW HOW DEEP GOES THE 

972
01:00:15,730 --> 01:00:15,964
HYPOXIA.

973
01:00:15,964 --> 01:00:19,300
IT'S PROBABLY PRETTY MILD 

974
01:00:19,300 --> 01:00:22,236
BECAUSE THE SPLEEN RECEIVES MUCH

975
01:00:22,236 --> 01:00:24,639
MORE BLOOD FLOW THAN IT NEEDS 

976
01:00:24,639 --> 01:00:29,444
FOR METABOLIC REQUIREMENTS AS A 

977
01:00:29,444 --> 01:00:31,446
FILTERING ORGAN.

978
01:00:31,446 --> 01:00:34,882
BUT THE TRUTH IS WE CONFER ONLY 

979
01:00:34,882 --> 01:00:35,984
INDIRECTLY, SORRY.

980
01:00:35,984 --> 01:00:38,353
>> ONE ADDITION.

981
01:00:38,353 --> 01:00:42,223
I THINK WE ACTUALLY HAVE MORE 

982
01:00:42,223 --> 01:00:44,325
EXPERIMENTS DOWN AT MILD HYPOXIA

983
01:00:44,325 --> 01:00:49,964
THAT MAY BE MORE SIMILAR TO MOST

984
01:00:49,964 --> 01:00:53,301
CASES IN VIVO.

985
01:00:53,301 --> 01:00:56,404
>> ONE COMMENT, IF I MAY.

986
01:00:56,404 --> 01:00:58,773
MOST OF WHAT WE HAVE SHOWN IN 

987
01:00:58,773 --> 01:01:03,344
MECHANICAL RETENTION OF NORMAL S

988
01:01:03,344 --> 01:01:06,648
IS UNDER NORMOXIA.

989
01:01:06,648 --> 01:01:11,285
THERE IS NOT ONLY SICKLING AND 

990
01:01:11,285 --> 01:01:14,889
MECHANICAL RETENTION IN SICKLE 

991
01:01:14,889 --> 01:01:17,258
CELL DISEASE CASE.

992
01:01:17,258 --> 01:01:22,030
>> GREG COTTO FROM CSL.

993
01:01:22,030 --> 01:01:23,631
CONGRATULATIONS THIS IS FABULOUS

994
01:01:23,631 --> 01:01:24,065
PROGRESS.

995
01:01:24,065 --> 01:01:26,434
THERE'S A STRUCTURAL NUANCE I'M 

996
01:01:26,434 --> 01:01:29,237
WONDERING ABOUT IN THE IMAGING 

997
01:01:29,237 --> 01:01:30,304
OF MACROPHAGES ADHERING TO 

998
01:01:30,304 --> 01:01:31,873
SICKLE CELLS, IT APPEARS THE 

999
01:01:31,873 --> 01:01:35,643
LEGEND EDGE OF THE INTERACTION 

1000
01:01:35,643 --> 01:01:37,512
IS ALWAYS ONE OF THE POINTS OF 

1001
01:01:37,512 --> 01:01:37,945
THE CELL.

1002
01:01:37,945 --> 01:01:42,083
AND I WONDERED IF YOU HAVE 

1003
01:01:42,083 --> 01:01:44,352
INSIGHTS WHETHER IT'S 

1004
01:01:44,352 --> 01:01:46,954
INTERACTION THROUGH RECEPTORS OR

1005
01:01:46,954 --> 01:01:47,288
ANY OTHERS?

1006
01:01:47,288 --> 01:01:49,624
IT'S REMINISCENT OF WHAT MING 

1007
01:01:49,624 --> 01:01:52,794
SHOWED IN THE PAST OF THE 

1008
01:01:52,794 --> 01:01:58,933
LEADING EDGE ADHESION TO 

1009
01:01:58,933 --> 01:02:01,469
FIBERNECTIN IN TERMS OF SICKLE 

1010
01:02:01,469 --> 01:02:01,736
CELLS.

1011
01:02:01,736 --> 01:02:02,637
>> THANK YOU.

1012
01:02:02,637 --> 01:02:04,105
I DON'T THINK WE HAVE LOOKED 

1013
01:02:04,105 --> 01:02:04,539
INTO THAT YET.

1014
01:02:04,539 --> 01:02:07,408
I THINK YOU HAVE A VERY GOOD 

1015
01:02:07,408 --> 01:02:07,709
SUGGESTION.

1016
01:02:07,709 --> 01:02:11,379
MAYBE WE SHOULD TAKE A LOOK AND 

1017
01:02:11,379 --> 01:02:12,647
TRY TO SEE IF THAT HAPPENS.

1018
01:02:12,647 --> 01:02:15,016
THANK YOU.

1019
01:02:15,016 --> 01:02:17,785
>> CAN I ADD SOMETHING
HERE 

1020
01:02:17,785 --> 01:02:20,755
BECAUSE WE HAVE BEEN WORKING 

1021
01:02:20,755 --> 01:02:22,390
WITH A GROUP AT JOHNS HOPKINS 

1022
01:02:22,390 --> 01:02:24,559
AND HAVE RECENTLY PUBLISHED A 

1023
01:02:24,559 --> 01:02:27,428
PAPER ON THE SIGNALLING 

1024
01:02:27,428 --> 01:02:29,397
MECHANISM.

1025
01:02:29,397 --> 01:02:32,700
FOR THAT WE ARE TRYING TO EMBED 

1026
01:02:32,700 --> 01:02:34,469
THE PROCESS WITH THE MECHANISM 

1027
01:02:34,469 --> 01:02:35,870
CURRENTLY BUT PUBLISHED THIS 

1028
01:02:35,870 --> 01:02:39,040
PAPER WHERE WE INCLUDE THE 

1029
01:02:39,040 --> 01:02:42,143
SIGNALS AND OTHER LIGANDS 

1030
01:02:42,143 --> 01:02:43,544
RECEPTORS THE MECHANISM FOR THIS

1031
01:02:43,544 --> 01:02:47,482
AND NOW WE ARE IN THE PROCESS OF

1032
01:02:47,482 --> 01:02:50,084
INTEGRATING THE SIGNALLING AND 

1033
01:02:50,084 --> 01:02:58,993
THE BIO MECHANICAL ASPECT OF 

1034
01:02:58,993 --> 01:03:00,261
CYTOSIS I SHOWED YOU.

1035
01:03:00,261 --> 01:03:01,829
>> DREXEL UNIVERSITY.

1036
01:03:01,829 --> 01:03:04,165
THIS WAS A BEAUTIFUL 

1037
01:03:04,165 --> 01:03:05,533
COMPREHENSIVE STUDY AND ALSO 

1038
01:03:05,533 --> 01:03:08,503
WANT TO POINT OUT THAT THE 

1039
01:03:08,503 --> 01:03:11,506
MOVIES THAT GEORGE SHOWS ARE SO 

1040
01:03:11,506 --> 01:03:13,374
COMPELLING, IT'S DECEPTIVE TO 

1041
01:03:13,374 --> 01:03:19,480
KNOW HOW CRAZY THE COMPUTATIONAL

1042
01:03:19,480 --> 01:03:21,048
LEVELS ARE TO SHOW ALL THAT 

1043
01:03:21,048 --> 01:03:21,249
STUFF.

1044
01:03:21,249 --> 01:03:27,255
THE POINT I WANTED TO MAKE TO 

1045
01:03:27,255 --> 01:03:34,462
YOU IS REGARDING THE VOXELOTOR 

1046
01:03:34,462 --> 01:03:36,130
AND IT'S IMPORTANT TO COMPARE 

1047
01:03:36,130 --> 01:03:40,134
THAT AND NON-TREATED CELLS AT 

1048
01:03:40,134 --> 01:03:42,637
CONSTANT OXYGEN DELIVERY RATHER 

1049
01:03:42,637 --> 01:03:53,147
THAN CONSTANT P.O.T. BECAUSE 

1050
01:03:55,316 --> 01:03:57,151
VOXELOTOR AND THE COMPARISON IS 

1051
01:03:57,151 --> 01:04:02,156
FOR THE GIVEN A OF OXYGEN HOW 

1052
01:04:02,156 --> 01:04:05,126
WELL HAS VOXELOTOR DONE COMPARED

1053
01:04:05,126 --> 01:04:05,760
TO THE CONTROLS.

1054
01:04:05,760 --> 01:04:06,627
>> THANK YOU.

1055
01:04:06,627 --> 01:04:07,929
THAT WAS A HARD EXPERIMENT TO DO

1056
01:04:07,929 --> 01:04:09,397
BUT WERE THINKING HOW TO MANAGE 

1057
01:04:09,397 --> 01:04:09,597
THAT.

1058
01:04:09,597 --> 01:04:11,399
>> YOU GUYS ARE AT M.I.T.

1059
01:04:11,399 --> 01:04:11,966
YOU'LL FIGURE IT OUT.

1060
01:04:11,966 --> 01:04:17,371
>> THANK YOU.

1061
01:04:17,371 --> 01:04:18,072
>> THANK YOU.

1062
01:04:18,072 --> 01:04:25,413
YES, WE HAVE ONLINE QUESTIONS.

1063
01:04:25,413 --> 01:04:27,582
>> THANK YOU FOR GREAT
TALKS.

1064
01:04:27,582 --> 01:04:29,617
YOU LOOKED AT MACROPHAGES WITHIN

1065
01:04:29,617 --> 01:04:31,352
THE SPLEEN.

1066
01:04:31,352 --> 01:04:32,987
WHAT ABOUT OTHER IMMUNE CELLS 

1067
01:04:32,987 --> 01:04:34,455
AND SPECIFIC COMPONENTS OF THE 

1068
01:04:34,455 --> 01:04:34,689
SPLEEN.

1069
01:04:34,689 --> 01:04:35,957
ARE THERE DIFFERENCES BETWEEN 

1070
01:04:35,957 --> 01:04:46,367
THE RED AND WHITE PULP?

1071
01:04:47,368 --> 01:04:57,778
>> THERE'S FIBROSIS IN THE

1072
01:04:59,280 --> 01:05:00,715
PROPORTION OF KIDS AND THERE'S A

1073
01:05:00,715 --> 01:05:03,284
LOSS OF WHITE PULP SO LIKELY 

1074
01:05:03,284 --> 01:05:10,191
SOME DEFECTS IN ADAPTIVE 

1075
01:05:10,191 --> 01:05:17,431
COMMUNITY AND RECENT RESULTS THE

1076
01:05:17,431 --> 01:05:19,300
SPLEEN IS STILL WORKING AND 

1077
01:05:19,300 --> 01:05:21,802
THERE'S NO OBVIOUS IMPAIRMENT OF

1078
01:05:21,802 --> 01:05:23,671
IMMUNE CELLS AT THIS STAGE.

1079
01:05:23,671 --> 01:05:25,806
THIS IS THE PERIOD WHERE MOST 

1080
01:05:25,806 --> 01:05:28,910
KEEN TO LOOK AT THE PROCESSES 

1081
01:05:28,910 --> 01:05:29,543
NOT LATER ON.

1082
01:05:29,543 --> 01:05:31,178
THERE MAY BE MANY THINGS COMING 

1083
01:05:31,178 --> 01:05:35,950
LATER IN THE EVOLUTION.

1084
01:05:35,950 --> 01:05:40,187
>> ANYMORE QUESTIONS?

1085
01:05:40,187 --> 01:05:40,488
GREAT?

1086
01:05:40,488 --> 01:05:42,456
IF THERE'S COMMENTS ON CHAT I'M 

1087
01:05:42,456 --> 01:05:43,391
SURE GEORGE AND PIERRE WILL TAKE

1088
01:05:43,391 --> 01:05:45,459
A LOOK AT THAT.

1089
01:05:45,459 --> 01:05:47,295
WELL, THANK YOU VERY MUCH FOR 

1090
01:05:47,295 --> 01:05:54,669
THIS AMAZING JOURNEY BETWEEN LAB

1091
01:05:54,669 --> 01:06:05,212
AND MICROFLUIDICS AND IN SILICO 

1092
01:06:06,747 --> 01:06:10,084
AND WE'LL COME BACK TO EARTH AND

1093
01:06:10,084 --> 01:06:15,356
NATURAL HISTORY OF AVASCULAR 

1094
01:06:15,356 --> 01:06:17,224
NECROSIS OF FEMME EERL HEAD IN 

1095
01:06:17,224 --> 01:06:21,462
CHILDREN AND ADOLESCENTS WITH 

1096
01:06:21,462 --> 01:06:23,264
SICKLE CELL DISEASE FROM 

1097
01:06:23,264 --> 01:06:32,940
DR. KHALID ELBASHIR.

1098
01:06:32,940 --> 01:06:35,943
>> I HAVE NO DISCLOSURES.

1099
01:06:35,943 --> 01:06:39,180
AS WE HEARD IN SEVERAL 

1100
01:06:39,180 --> 01:06:40,748
PRESENTATIONS THERE'S A LOT OF 

1101
01:06:40,748 --> 01:06:42,683
GAP IN KNOWLEDGE IN MANY THINGS 

1102
01:06:42,683 --> 01:06:47,822
IN DEVELOP.

1103
01:06:47,822 --> 01:06:49,357
-- IN SICKLE CELL.

1104
01:06:49,357 --> 01:06:54,595
AND I'D LIKE TO SHED LIGHT AND 

1105
01:06:54,595 --> 01:06:55,730
THERE'S PROGRESSIVE CONDITION OF

1106
01:06:55,730 --> 01:06:57,598
SICKLE CELL DISEASE AND 

1107
01:06:57,598 --> 01:07:02,503
OBSTRUCTION OF THE BLOOD BY THE 

1108
01:07:02,503 --> 01:07:04,205
SICKLE RED BLOOD CELL LEADING TO

1109
01:07:04,205 --> 01:07:06,941
ISCHEMIA AND LOSS OF STRUCTURAL 

1110
01:07:06,941 --> 01:07:08,809
INTEGRITY AND EVENTUALLY 

1111
01:07:08,809 --> 01:07:10,878
COLLAPSE OF THE FEMORAL HEAD.

1112
01:07:10,878 --> 01:07:13,214
IT AFFECTS ABOUT 30% OF PEOPLE 

1113
01:07:13,214 --> 01:07:16,450
LIVING WITH SICKLE CELL DISEASE 

1114
01:07:16,450 --> 01:07:20,388
AND THE HIGHEST OF AVASCULAR 

1115
01:07:20,388 --> 01:07:27,094
NECROSIS IS SS AMONG AFRICAN 

1116
01:07:27,094 --> 01:07:32,767
AMERICANS AND WITH 41% HAVING A 

1117
01:07:32,767 --> 01:07:34,435
VASCULAR NECROSIS.

1118
01:07:34,435 --> 01:07:37,004
THE PREVALENCE INCREASES WITH 

1119
01:07:37,004 --> 01:07:41,042
AGE AND IMPACT OF AVASCULAR 

1120
01:07:41,042 --> 01:07:42,676
NECROSIS IS MORE PRONOUNCED 

1121
01:07:42,676 --> 01:07:44,278
AMONG ADULT.

1122
01:07:44,278 --> 01:07:47,515
IN THE ABSENCE OF INTERVENTION 

1123
01:07:47,515 --> 01:07:50,951
THE COLLAPSE OF FEMORAL HEAD IN 

1124
01:07:50,951 --> 01:07:52,253
90% OF PATIENTS WITHIN FIVE 

1125
01:07:52,253 --> 01:07:55,756
YEARS AFTER THE ONSET OF 

1126
01:07:55,756 --> 01:07:58,192
CLINICAL SYMPTOMS.

1127
01:07:58,192 --> 01:08:03,064
MEANING PAIN AND PROBLEMS.

1128
01:08:03,064 --> 01:08:06,033
AVASCULAR NECROSIS LEADS TO 

1129
01:08:06,033 --> 01:08:08,502
REDUCED QUALITY OF LIFE 

1130
01:08:08,502 --> 01:08:11,238
OBVIOUSLY AND POSSIBLY INCREASED

1131
01:08:11,238 --> 01:08:12,873
OPIOID UTILIZATION.

1132
01:08:12,873 --> 01:08:16,477
THERE ARE STILL GAPS IN 

1133
01:08:16,477 --> 01:08:17,645
UNDERSTANDING THE DISEASE COURSE

1134
01:08:17,645 --> 01:08:20,214
AND MANAGEMENT OF AVASCULAR 

1135
01:08:20,214 --> 01:08:30,758
NECROSIS DUE TO GAP IN RESEARCH.

1136
01:08:35,763 --> 01:08:41,735
AND THERE'S CLINICAL X-RAY AND 

1137
01:08:41,735 --> 01:08:43,904
MRI AND YOU CAN SEE IN THIS 

1138
01:08:43,904 --> 01:08:46,540
CARTOON HOW THE HIP IS GETTING 

1139
01:08:46,540 --> 01:08:49,176
ANGRY AS THE DISEASE ADVANCE.

1140
01:08:49,176 --> 01:08:51,812
SO OUR GOAL IS TRY TO CAPTURE 

1141
01:08:51,812 --> 01:08:57,151
THE DISEASE AS EARLY AS POSSIBLE

1142
01:08:57,151 --> 01:09:02,523
TO PROGRESSION TO COLLAPSE HIP 

1143
01:09:02,523 --> 01:09:12,666
AND DEGENERATIVE DISEASE.

1144
01:09:12,666 --> 01:09:15,569
AT ST. JUDE WE'RE DOING STUDY OF

1145
01:09:15,569 --> 01:09:17,304
AVASCULAR NECROSIS TO 

1146
01:09:17,304 --> 01:09:23,277
CHARACTERIZE THE CLINICAL RISK 

1147
01:09:23,277 --> 01:09:26,313
FACTORS, BIOLOGICAL PARAMETERS 

1148
01:09:26,313 --> 01:09:31,719
OF AVASCULAR NECROSIS OF THE 

1149
01:09:31,719 --> 01:09:35,256
FEMORAL HEAD AND PROGRESSION OF 

1150
01:09:35,256 --> 01:09:38,859
AVASCULAR NECROSIS AND WANTED TO

1151
01:09:38,859 --> 01:09:41,162
EXAMINE THE TWO GROUPS AND 

1152
01:09:41,162 --> 01:09:44,431
IDENTIFY IF THERE IS ANY GENETIC

1153
01:09:44,431 --> 01:09:46,667
FACTOR LIKE POLYMORPHISM 

1154
01:09:46,667 --> 01:09:50,070
DOCUMENTED THAT CAN INCREASE THE

1155
01:09:50,070 --> 01:09:54,708
RISK FOR AVASCULAR NECROSIS 

1156
01:09:54,708 --> 01:09:57,144
AMONG PATIENTS WITH SICKLE CELL 

1157
01:09:57,144 --> 01:10:03,083
DISEASE AND EXAMINE IF THERE'S A

1158
01:10:03,083 --> 01:10:04,852
RISK FACTOR MEANING 

1159
01:10:04,852 --> 01:10:07,121
HOSPITALIZATION AND HOSPITAL 

1160
01:10:07,121 --> 01:10:08,055
RE-ADMISSIONS.

1161
01:10:08,055 --> 01:10:16,897
WE ALSO WANT TO DETERMINE THE 

1162
01:10:16,897 --> 01:10:20,601
FULL HIP REPLACEMENT AND MEASURE

1163
01:10:20,601 --> 01:10:21,468
THE TIME BETWEEN DIAGNOSIS AND 

1164
01:10:21,468 --> 01:10:31,845
SURGICAL INTERVENTION.

1165
01:10:47,361 --> 01:10:51,465
AND LOOK AT AVASCUAR NECROSIS 

1166
01:10:51,465 --> 01:10:58,872
USING HIP MRI.

1167
01:10:58,872 --> 01:11:01,875
WE LOOKED AT THE DATABASE IN 

1168
01:11:01,875 --> 01:11:03,277
ST. JUDE BETWEEN PATIENTS 

1169
01:11:03,277 --> 01:11:06,113
BETWEEN 2006 AND 2021.

1170
01:11:06,113 --> 01:11:08,182
AGE RANGES BETWEEN 0 AND 27 

1171
01:11:08,182 --> 01:11:10,884
YEARS OLD.

1172
01:11:10,884 --> 01:11:14,355
AT LEAST THEY HAD ONE MRI FOR 

1173
01:11:14,355 --> 01:11:24,898
SUSPECTED AVASCULAR NECROSIS AND

1174
01:11:28,002 --> 01:11:30,504
LOOKED AT MODIFIABLE AND 

1175
01:11:30,504 --> 01:11:35,242
UNMODIFIABLE RISK FACTORS.

1176
01:11:35,242 --> 01:11:37,778
IN THE UNMODIFIABLE RISK FACTORS

1177
01:11:37,778 --> 01:11:39,313
WE LOOKED AT PATIENTS SEQUENCED 

1178
01:11:39,313 --> 01:11:42,082
AND THIS IS ONGOING WORK TO LOOK

1179
01:11:42,082 --> 01:11:45,619
AT THE MORPHISM AND LOOKING AT 

1180
01:11:45,619 --> 01:11:46,420
THOSE WITH AVASCULAR NECROSIS 

1181
01:11:46,420 --> 01:11:49,957
AND THE CLINICAL AND LABORATORY 

1182
01:11:49,957 --> 01:11:53,227
FACTORS SUCH AS HEMOGLOBIN F, 

1183
01:11:53,227 --> 01:12:00,701
VITAMIN D AND BONE MARROW 

1184
01:12:00,701 --> 01:12:02,136
DENSITY.

1185
01:12:02,136 --> 01:12:06,106
AND THE SAME FOR THE INDIVIDUALS

1186
01:12:06,106 --> 01:12:09,843
WITH NO AVASCULAR NECROSIS.

1187
01:12:09,843 --> 01:12:13,414
SO THE OUTCOMES WE'RE TRYING TO 

1188
01:12:13,414 --> 01:12:15,916
SEE AT WHAT AGE IS AVASCULAR 

1189
01:12:15,916 --> 01:12:18,052
NECROSIS IS PRESENT.

1190
01:12:18,052 --> 01:12:23,290
AND WHAT ARE THE DIAGNOSTIC 

1191
01:12:23,290 --> 01:12:24,725
MODALITY USED TO DIAGNOSIS 

1192
01:12:24,725 --> 01:12:25,859
AVASCULAR NECROSIS AND 

1193
01:12:25,859 --> 01:12:26,593
RECOMMENDATION AT THE TIME 

1194
01:12:26,593 --> 01:12:29,430
RECOMMEND JUST PHYSICAL THERAPY 

1195
01:12:29,430 --> 01:12:30,998
AND COMPRESSOR REPLACEMENT AT 

1196
01:12:30,998 --> 01:12:35,969
THE TIME OF PRESENTATION AND 

1197
01:12:35,969 --> 01:12:38,939
ALSO THE YEAR BEFORE AND AFTER 

1198
01:12:38,939 --> 01:12:40,974
INTERVENTION AND THE FREQUENCY 

1199
01:12:40,974 --> 01:12:42,609
OF HOSPITALIZATION AND E.D. 

1200
01:12:42,609 --> 01:12:50,017
VISITS AND OTHER COMPLICATIONS 

1201
01:12:50,017 --> 01:12:54,722
OF AV AND THESE WHICH ARE MORE 

1202
01:12:54,722 --> 01:12:55,356
BURDENED WITH SICKLE CELL 

1203
01:12:55,356 --> 01:12:57,324
DISEASE AND LOOK AT 

1204
01:12:57,324 --> 01:12:58,492
PSYCHOLOGICAL IMPACT TO MEASURE 

1205
01:12:58,492 --> 01:13:00,694
WHETHER IT HAS INDUCED ANXIETY 

1206
01:13:00,694 --> 01:13:03,263
OR DEPRESSION AMONG THE 

1207
01:13:03,263 --> 01:13:09,470
PATIENTS.

1208
01:13:09,470 --> 01:13:17,544
AND SAME WITH THE PATIENT OF 

1209
01:13:17,544 --> 01:13:19,413
AVASCULAR NECROSIS WITH NO 

1210
01:13:19,413 --> 01:13:19,780
FEMORAL HEAD.

1211
01:13:19,780 --> 01:13:24,451
WE HAD A TOTAL OF 68 PATIENTS 

1212
01:13:24,451 --> 01:13:25,853
WITH MRI FOR SUSPECTED AVASCULAR

1213
01:13:25,853 --> 01:13:30,858
NECROSIS OF THE FEMORAL HEAD.

1214
01:13:30,858 --> 01:13:36,063
OUT OF THE 68, 34 OF THEM WITH 

1215
01:13:36,063 --> 01:13:38,265
AVASCULAR NECROSIS AND 34 HAD NO

1216
01:13:38,265 --> 01:13:39,633
AVASCULAR NECROSIS.

1217
01:13:39,633 --> 01:13:41,969
SO THE AGE WAS A LITTLE HIGHER 

1218
01:13:41,969 --> 01:13:43,203
AMONG THE PATIENTS WHO HAD 

1219
01:13:43,203 --> 01:13:44,872
AVASCULAR NECROSIS COMPARED TO 

1220
01:13:44,872 --> 01:13:47,207
THE PATIENTS WHO DID NOT HAVE 

1221
01:13:47,207 --> 01:13:47,808
AVASCULAR NECROSIS AND THEN 

1222
01:13:47,808 --> 01:13:51,445
THERE WAS INCREASED LIKE IN MALE

1223
01:13:51,445 --> 01:13:57,251
PREVALENCE ABOUT ALMOST 68% OF 

1224
01:13:57,251 --> 01:14:00,721
THEM WERE MALE.

1225
01:14:00,721 --> 01:14:02,756
THE HEMOGLOBIN F WAS HIGHER IN 

1226
01:14:02,756 --> 01:14:07,895
PATIENTS WITH NO AVASCULAR 

1227
01:14:07,895 --> 01:14:09,029
NECROSIS BUT NOT STATISTICALLY 

1228
01:14:09,029 --> 01:14:11,465
SIGNIFICANT AND WE ASSUME 

1229
01:14:11,465 --> 01:14:12,566
BECAUSE OF THE SMALL SAMPLE 

1230
01:14:12,566 --> 01:14:12,866
SIZE.

1231
01:14:12,866 --> 01:14:15,269
ONE OF THE THINGS WE FOUND AND 

1232
01:14:15,269 --> 01:14:17,271
WE STILL ARE GETTING DATA AND 

1233
01:14:17,271 --> 01:14:19,573
ADDING MORE PEOPLE TO THE STUDY 

1234
01:14:19,573 --> 01:14:24,278
THAT WE DID NOT FIND DIFFERENCE 

1235
01:14:24,278 --> 01:14:25,679
IN HYDROXYUREA BETWEEN THE TWO 

1236
01:14:25,679 --> 01:14:26,113
GROUPS.

1237
01:14:26,113 --> 01:14:30,717
ALSO WE LOOKED AT THE BONE 

1238
01:14:30,717 --> 01:14:34,988
MARROW DENSITY THE P VALUE WAS 

1239
01:14:34,988 --> 01:14:36,690
207 THOUGH IT WAS NOT 

1240
01:14:36,690 --> 01:14:38,725
STATISTICALLY SIGNIFICANT BUT 

1241
01:14:38,725 --> 01:14:42,696
GIVEN THE SAMPLE SIZE THAT MAY 

1242
01:14:42,696 --> 01:14:53,040
BE SAYING SOMETHING.

1243
01:15:00,247 --> 01:15:01,415
THIS IS THE CONTINUATION OF THE 

1244
01:15:01,415 --> 01:15:04,318
RESULT AND THE TABLE WE LOOKED 

1245
01:15:04,318 --> 01:15:06,954
AT THE UTILIZATION AND DISEASE 

1246
01:15:06,954 --> 01:15:08,188
BURDEN.

1247
01:15:08,188 --> 01:15:10,958
THE NUMBER OF E.D. VISITS AND 

1248
01:15:10,958 --> 01:15:13,427
HOSPITALIZATION WAS HIGHER IN 

1249
01:15:13,427 --> 01:15:14,094
PATIENTS WITH AVASCULAR NECROSIS

1250
01:15:14,094 --> 01:15:16,663
COMPARED TO PATIENTS WITH NO 

1251
01:15:16,663 --> 01:15:17,764
AVASCULAR NECROSIS WHILE AGAIN 

1252
01:15:17,764 --> 01:15:20,767
WAS NOT STATISTICALLY 

1253
01:15:20,767 --> 01:15:22,202
SIGNIFICANT.

1254
01:15:22,202 --> 01:15:23,103
WE USE THE MEASURE TO MEASURE 

1255
01:15:23,103 --> 01:15:25,572
THE HEALTH RELATED QUALITY OF 

1256
01:15:25,572 --> 01:15:28,642
LIFE AND THIS IS LIKE A SCALE 

1257
01:15:28,642 --> 01:15:30,744
BETWEEN 0 TO 100.

1258
01:15:30,744 --> 01:15:32,312
THE HIGHER NUMBER MEANING A 

1259
01:15:32,312 --> 01:15:35,449
BETTER HEALTH RELATED QUALITY OF

1260
01:15:35,449 --> 01:15:37,484
LIFE AND IT IS OBVIOUS THAT THE 

1261
01:15:37,484 --> 01:15:40,821
QUALITY OF LIFE WAS BETTER IN 

1262
01:15:40,821 --> 01:15:42,589
PATIENT WITH NO AVASCULAR 

1263
01:15:42,589 --> 01:15:43,690
NECROSIS AND PATIENTS WITH 

1264
01:15:43,690 --> 01:15:45,692
AVASCULAR NECROSIS LIKE WERE 

1265
01:15:45,692 --> 01:15:56,236
IMPACTED IN THE FOUR ARMS OF THE

1266
01:15:57,337 --> 01:16:00,607
PHYSICAL, EMOTIONAL AND THE PAIN

1267
01:16:00,607 --> 01:16:02,609
IMPACT WAS STATISTICALLY 

1268
01:16:02,609 --> 01:16:04,711
SIGNIFICANT EVEN IN THE SMALL 

1269
01:16:04,711 --> 01:16:06,513
SAMPLE SIZE BUT THERE WAS NO 

1270
01:16:06,513 --> 01:16:08,048
DIFFERENCE IN ANXIETY AND 

1271
01:16:08,048 --> 01:16:11,285
DEPRESSION BETWEEN THE TWO 

1272
01:16:11,285 --> 01:16:14,288
GROUPS.

1273
01:16:14,288 --> 01:16:16,056
SO THIS IS THE INITIAL GRAPH WE 

1274
01:16:16,056 --> 01:16:17,257
HAD.

1275
01:16:17,257 --> 01:16:21,728
IT WAS NOT SURPRISING THE 

1276
01:16:21,728 --> 01:16:23,297
AVASCULAR NECROSIS WAS MORE 

1277
01:16:23,297 --> 01:16:27,301
PREVALENT IN OLDER CHILDREN 

1278
01:16:27,301 --> 01:16:31,605
BETWEEN AGE 11 AND 16.

1279
01:16:31,605 --> 01:16:34,875
BUT WHAT WAS SURPRISING TO US IS

1280
01:16:34,875 --> 01:16:36,577
WE HAD EIGHT PATIENTS YOUNGER 

1281
01:16:36,577 --> 01:16:42,749
THAN 10 YEARS OLD AND ONE 

1282
01:16:42,749 --> 01:16:45,953
PATIENT PRESENTED WAS 4 YEARS 

1283
01:16:45,953 --> 01:16:46,920
OLD AND HAD AVASCULAR NECROSIS 

1284
01:16:46,920 --> 01:16:52,492
OF THE FEMORAL HEAD.

1285
01:16:52,492 --> 01:16:53,627
COMPARED TO PATIENTS WITH 

1286
01:16:53,627 --> 01:16:55,362
AVASCULAR NECROSIS OF THE 

1287
01:16:55,362 --> 01:16:56,330
FEMORAL HEAD PATIENT WITH 

1288
01:16:56,330 --> 01:16:57,130
AVASCULAR NECROSIS HAD 

1289
01:16:57,130 --> 01:16:59,533
SIGNIFICANTLY BETTER QUALITY OF 

1290
01:16:59,533 --> 01:17:02,336
LIFE DUE TO PAIN AND ABOUT 24% 

1291
01:17:02,336 --> 01:17:06,773
OF THE PATIENT WERE LESS THAN 10

1292
01:17:06,773 --> 01:17:09,743
YEARS OLD.

1293
01:17:09,743 --> 01:17:12,779
WE FOUND NO DIFFERENCE IN 

1294
01:17:12,779 --> 01:17:15,449
HYDROXYUREA USAGE AND BONE 

1295
01:17:15,449 --> 01:17:15,983
MINERAL DENSITY.

1296
01:17:15,983 --> 01:17:18,785
MORE DATA IS COMING IN.

1297
01:17:18,785 --> 01:17:22,255
CURRENTLY WE'RE DOING IN 

1298
01:17:22,255 --> 01:17:25,325
PROGRESS BY STUDYING THE GENETIC

1299
01:17:25,325 --> 01:17:27,361
DATA AND GETTING DATA FROM THE 

1300
01:17:27,361 --> 01:17:29,463
DEPARTMENT OF HEALTH FROM 

1301
01:17:29,463 --> 01:17:31,031
TENNESSEE TO COMPARE AND DATA 

1302
01:17:31,031 --> 01:17:32,933
LIKE RECENT DATA BEFORE THE 

1303
01:17:32,933 --> 01:17:34,368
PRESENTATION THERE WAS 83 

1304
01:17:34,368 --> 01:17:41,575
PATIENTS MORE RECENTLY ENROLLED.

1305
01:17:41,575 --> 01:17:45,545
SO THIS IS THE OUTCOME OF THE 

1306
01:17:45,545 --> 01:17:47,280
SURGICAL INTERVENTION IN THE 

1307
01:17:47,280 --> 01:17:47,748
COHORT.

1308
01:17:47,748 --> 01:17:49,383
THE MOST RECENT NUMBER IS 151 

1309
01:17:49,383 --> 01:17:53,253
PATIENT AND 65 OF THEM HAD 

1310
01:17:53,253 --> 01:17:53,720
AVASCULAR NECROSIS.

1311
01:17:53,720 --> 01:17:56,289
86 DID NOT HAVE.

1312
01:17:56,289 --> 01:18:00,027
OUT OF THE 65 ABOUT 20 HAD CORE 

1313
01:18:00,027 --> 01:18:01,495
DECOMPRESSION AND 15 OF THEM HAD

1314
01:18:01,495 --> 01:18:03,764
IT WITHIN ONE YEAR OF THE 

1315
01:18:03,764 --> 01:18:04,765
DIAGNOSIS.

1316
01:18:04,765 --> 01:18:07,267
AND FIVE HAD IT BETWEEN 14 

1317
01:18:07,267 --> 01:18:17,644
MONTHS TO 6 1/2 YEARS.

1318
01:18:19,046 --> 01:18:29,356
SIX HAD ARTHROPLASTY.

1319
01:18:34,795 --> 01:18:41,935
WE HAVE THE SAMPLE SIZE AND ONLY

1320
01:18:41,935 --> 01:18:44,037
INCLUDED PATIENT WITH MRI WITH 

1321
01:18:44,037 --> 01:18:44,671
SUSPECTED AVASCULAR NECROSIS BUT

1322
01:18:44,671 --> 01:18:47,274
HAVE NOT LOOKED AT THE PATIENT 

1323
01:18:47,274 --> 01:18:50,110
WHO WERE LIKE DID NOT HAVE HIP 

1324
01:18:50,110 --> 01:18:50,377
PAIN.

1325
01:18:50,377 --> 01:18:51,545
WE COULDN'T JUST SAFELY ASSUME 

1326
01:18:51,545 --> 01:18:54,347
ALL THE PATIENTS DID NOT HAVE 

1327
01:18:54,347 --> 01:18:54,781
AVASCULAR NECROSIS.

1328
01:18:54,781 --> 01:18:55,916
THAT'S ONE OF THE LIMITATIONS OF

1329
01:18:55,916 --> 01:19:03,390
THE STUDY.

1330
01:19:03,390 --> 01:19:05,125
WE DID THE SCREENING IN SICKLE 

1331
01:19:05,125 --> 01:19:08,462
CELL ABOUT SIX BUT NO ROUTINE 

1332
01:19:08,462 --> 01:19:11,064
SCREENING FOR AVASCULAR 

1333
01:19:11,064 --> 01:19:11,331
NECROSIS.

1334
01:19:11,331 --> 01:19:13,767
SO THE CONCEPT OF THE SCREENING 

1335
01:19:13,767 --> 01:19:22,075
IS TO CREATE GUIDELINES FOR 

1336
01:19:22,075 --> 01:19:23,310
SURVEILLANCE AND IT SHOWED IN 

1337
01:19:23,310 --> 01:19:29,216
YOUNGER PATIENTS AND RESEARCH 

1338
01:19:29,216 --> 01:19:32,152
HAS SHOWN THAT AVASCULAR 

1339
01:19:32,152 --> 01:19:34,988
NECROSIS SICKLE CELL CAN BE AN 

1340
01:19:34,988 --> 01:19:36,556
INDEPENDENT RISK FACTOR OF 

1341
01:19:36,556 --> 01:19:36,990
AVASCULAR NECROSIS.

1342
01:19:36,990 --> 01:19:41,328
SO THE BENEFIT IS TO PREVENT 

1343
01:19:41,328 --> 01:19:44,131
COMPLICATIONS AND START EARLY 

1344
01:19:44,131 --> 01:19:44,965
TREATMENT AND THERE'S RESEARCH 

1345
01:19:44,965 --> 01:19:47,567
SHOWING THIS ACTUALLY IS MORE 

1346
01:19:47,567 --> 01:19:49,202
BENEFICIAL TO THE PATIENT THAN 

1347
01:19:49,202 --> 01:19:51,271
WAITING UNTIL THE COLLAPSE OF 

1348
01:19:51,271 --> 01:19:53,073
THE HIP.

1349
01:19:53,073 --> 01:19:56,176
SO THE LIMITATION OF THE 

1350
01:19:56,176 --> 01:19:57,544
SCREENING IS LIKE FIRST OF ALL 

1351
01:19:57,544 --> 01:19:59,846
IT'S NOT THE GUIDELINE.

1352
01:19:59,846 --> 01:20:03,283
THE COST OF THE SCREENING AND 

1353
01:20:03,283 --> 01:20:04,785
OBTAINING MRI AND LACK OF 

1354
01:20:04,785 --> 01:20:07,521
EVIDENCE OF EFFICACY OF 

1355
01:20:07,521 --> 01:20:11,358
INTERVENTION IN EARLY STAGES OF 

1356
01:20:11,358 --> 01:20:12,125
AVASCULAR NECROSIS AND 

1357
01:20:12,125 --> 01:20:17,264
COMPLICATIONS OF SURGERY.

1358
01:20:17,264 --> 01:20:20,133
THIS IS A STUDY THAT IT IS 

1359
01:20:20,133 --> 01:20:24,805
BETTER TO DO SCREENING AND 

1360
01:20:24,805 --> 01:20:29,009
BETTER TO INTERVENE EARLY IN THE

1361
01:20:29,009 --> 01:20:29,910
EARLY STAGE OF THE DISEASE.

1362
01:20:29,910 --> 01:20:31,278
WHAT IS THE FUTURE HOLD?

1363
01:20:31,278 --> 01:20:36,516
WE NEED TO EXPAND RESEARCH AND 

1364
01:20:36,516 --> 01:20:38,685
USE NATIONAL REGISTRIES SUCH AS 

1365
01:20:38,685 --> 01:20:39,686
GRAND DAD TO GET MORE DATA.

1366
01:20:39,686 --> 01:20:41,755
WE NEED TO STUDY THE 

1367
01:20:41,755 --> 01:20:47,194
EFFECTIVENESS OF INTERVENTIONS.

1368
01:20:47,194 --> 01:20:48,428
I KNOW THERE WAS DEBATE IN 

1369
01:20:48,428 --> 01:20:52,098
YOUNGER PATIENTS BUT WHERE HE 

1370
01:20:52,098 --> 01:20:57,571
NEED TO EXAM THE RATIONALE OF 

1371
01:20:57,571 --> 01:21:00,674
DOING MRI AND INVESTIGATE THE 

1372
01:21:00,674 --> 01:21:02,008
CURATIVE THERAPIES DISCUSSED IN 

1373
01:21:02,008 --> 01:21:06,813
THE FIRST DAY TO REVERSE THE 

1374
01:21:06,813 --> 01:21:12,352
PROGRESSION OF THE DISEASE.

1375
01:21:12,352 --> 01:21:19,192
I WANT TO THANK THE ENTIRE TEAM 

1376
01:21:19,192 --> 01:21:21,228
AT ST. JUDE.

1377
01:21:21,228 --> 01:21:27,267
IT TAKES A VILLAGE AND THANK YOU

1378
01:21:27,267 --> 01:21:32,038
TO NHLBI FOR THE OPPORTUNITY.

1379
01:21:32,038 --> 01:21:35,075
>> ANY QUICK QUESTIONS
FROM THE 

1380
01:21:35,075 --> 01:21:36,776
AUDIENCE?

1381
01:21:36,776 --> 01:21:38,545
ONE QUICK QUESTION.

1382
01:21:38,545 --> 01:21:40,780
>> NICE PRESENTATION.

1383
01:21:40,780 --> 01:21:42,449
THERE ARE REPORTS FROM INDIA 

1384
01:21:42,449 --> 01:21:44,517
WHERE THEY'RE OBSERVING AVN 

1385
01:21:44,517 --> 01:21:46,186
FREQUENTLY IN A CERTAIN PART OF 

1386
01:21:46,186 --> 01:21:50,390
THE COUNTRY WHERE THEY'VE DONE 

1387
01:21:50,390 --> 01:21:51,191
IMAGING AND EVERYTHING AS YOUNG 

1388
01:21:51,191 --> 01:21:53,827
AS 6 YEARS OLD IN LARGE NUMBERS.

1389
01:21:53,827 --> 01:21:55,528
THEY DON'T HAVE THE PERCENT BUT 

1390
01:21:55,528 --> 01:21:59,266
IT'S MORE RECENT INFORMATION.

1391
01:21:59,266 --> 01:22:02,869
THE OTHER QUESTION IS DO THESE 

1392
01:22:02,869 --> 01:22:04,137
PHOSPHONATES REDUCE PAIN?

1393
01:22:04,137 --> 01:22:06,606
>> THE FIRST QUESTION
WE'RE 

1394
01:22:06,606 --> 01:22:17,117
SEEING THAT ALSO IN ST. JUDE.

1395
01:22:24,457 --> 01:22:29,996
THERE WAS A SURPRISE TO HAVE 

1396
01:22:29,996 --> 01:22:33,233
AVASCULAR NECROSIS AT THE YOUNG 

1397
01:22:33,233 --> 01:22:33,400
AGE.

1398
01:22:33,400 --> 01:22:36,503
THE PATIENT STARTED HYDROXYUREA 

1399
01:22:36,503 --> 01:22:39,706
EARLY AND WE'RE LEANING TO CHECK

1400
01:22:39,706 --> 01:22:40,907
IN FOR GENETIC RISK FACTORS ON 

1401
01:22:40,907 --> 01:22:48,048
THE PATIENTS.

1402
01:22:48,048 --> 01:22:51,017
THERE'S PAPERS PHOSPHONATE HELPS

1403
01:22:51,017 --> 01:22:57,891
WITH PAIN AND STOPS REGRESSION 

1404
01:22:57,891 --> 01:22:58,191
AND REVERSE.

1405
01:22:58,191 --> 01:23:00,660
BECAUSE OF THE SIDE EFFECTS I 

1406
01:23:00,660 --> 01:23:03,563
SPOKE TO MANY SENIORS AT 

1407
01:23:03,563 --> 01:23:05,932
ST. JUDE, BECAUSE OF THE SIDE 

1408
01:23:05,932 --> 01:23:10,236
EFFECT OF THE PHOSPHONATE IN 

1409
01:23:10,236 --> 01:23:11,638
CHILDREN THEY'RE NOT FOR USING 

1410
01:23:11,638 --> 01:23:12,839
IT.

1411
01:23:12,839 --> 01:23:18,345
WE NEED MORE RESEARCH TO SEE THE

1412
01:23:18,345 --> 01:23:24,517
EFFECT MAYBE SOME CLINICAL TRIAL

1413
01:23:24,517 --> 01:23:26,119
TO BE ABLE TO ASSESS THE SAFETY 

1414
01:23:26,119 --> 01:23:28,455
IN CHILDREN BUT YES, IT DOES 

1415
01:23:28,455 --> 01:23:33,259
HELP WITH PAIN IN THE OPTION.

1416
01:23:33,259 --> 01:23:34,394
>> THANK YOU AGAIN.

1417
01:23:34,394 --> 01:23:36,429
LET'S MOVE ON TO THE NEXT 

1418
01:23:36,429 --> 01:23:40,667
TALK -- IS THERE SOMETHING 

1419
01:23:40,667 --> 01:23:41,067
ONLINE?

1420
01:23:41,067 --> 01:23:43,269
DR. ELBASHIR CAN ADDRESS THAT 

1421
01:23:43,269 --> 01:23:45,071
ONLINE IN YOUR LAPTOP.

1422
01:23:45,071 --> 01:23:46,606
SORRY, WE'RE OUT OF TIME.

1423
01:23:46,606 --> 01:23:48,041
LET'S MOVE ON TO THE NEXT TALK 

1424
01:23:48,041 --> 01:23:50,343
WHICH IS DISSEMINATION AND 

1425
01:23:50,343 --> 01:23:52,979
TRUST, GENE THERAPY INFORMATION 

1426
01:23:52,979 --> 01:23:58,284
CAMPAIGN BY SCDAA, DR. LEWIS 

1427
01:23:58,284 --> 01:23:58,585
HSU.

1428
01:23:58,585 --> 01:23:59,953
>> GOOD MORNING.

1429
01:23:59,953 --> 01:24:03,490
I WANT TO MENTION THAT I WAS 

1430
01:24:03,490 --> 01:24:04,891
AFFILIATED WITH CDC IN THE 

1431
01:24:04,891 --> 01:24:06,059
PROGRAM BUT NOT REALLY 

1432
01:24:06,059 --> 01:24:08,028
AFFILIATED CDC.

1433
01:24:08,028 --> 01:24:09,129
THIS IS ABOUT SICKLE CELL 

1434
01:24:09,129 --> 01:24:10,397
DISEASE ASSOCIATION OF AMERICA 

1435
01:24:10,397 --> 01:24:12,832
AND I'D LIKE TO FIRST 

1436
01:24:12,832 --> 01:24:15,268
ACKNOWLEDGE MY PARTNERS, DR. IVY

1437
01:24:15,268 --> 01:24:25,545
IN THE AUDIENCE.

1438
01:24:35,688 --> 01:24:37,657
AND DR. HARTFIELD.

1439
01:24:37,657 --> 01:24:40,427
I'M A VOLUNTEER CHIEF MEDICAL 

1440
01:24:40,427 --> 01:24:40,660
OFFICER.

1441
01:24:40,660 --> 01:24:43,263
THE MISSION OF SCDAA IS TO 

1442
01:24:43,263 --> 01:24:48,835
ADVOCATE FOR PEOPLE AFFECTED BY 

1443
01:24:48,835 --> 01:24:50,503
SICKLE CELL CONDITIONS AND 

1444
01:24:50,503 --> 01:24:54,874
MAXIMIZE QUALITY OF LIFE AND 

1445
01:24:54,874 --> 01:24:56,576
ADVANCE THE SEARCH FOR UNIVERSAL

1446
01:24:56,576 --> 01:24:56,943
CURE.

1447
01:24:56,943 --> 01:25:00,280
THE STRUCTURE IS THERE'S MEMBER 

1448
01:25:00,280 --> 01:25:02,816
ORGANIZATIONS OVER 50 ACROSS THE

1449
01:25:02,816 --> 01:25:03,049
COUNTRY.

1450
01:25:03,049 --> 01:25:11,191
THE DISTRIBUTION OF THE MEMBER 

1451
01:25:11,191 --> 01:25:12,525
ORGANIZATIONS MORE OR LESS 

1452
01:25:12,525 --> 01:25:13,626
REFLECTS SICKLE CELL DISEASE AND

1453
01:25:13,626 --> 01:25:20,300
WHERE THERE'S STATES WITH NOT 

1454
01:25:20,300 --> 01:25:22,202
THIS ORGANIZATION REFLECT MORE 

1455
01:25:22,202 --> 01:25:23,002
WORK TO BE DONE.

1456
01:25:23,002 --> 01:25:24,737
THE MEMBER CATEGORIES ARE 

1457
01:25:24,737 --> 01:25:25,672
INDIFFERENT TIERS.

1458
01:25:25,672 --> 01:25:31,010
SOME ARE DOING ADVOCACY, SOME 

1459
01:25:31,010 --> 01:25:33,780
ARE DOING SUPPORT IN ADDITION 

1460
01:25:33,780 --> 01:25:36,883
AND DIRECT SERVICE TO THE MEMBER

1461
01:25:36,883 --> 01:25:37,484
INDIVIDUALS WITH SICKLE CELL 

1462
01:25:37,484 --> 01:25:47,627
DISEASE.

1463
01:25:54,734 --> 01:25:58,071
AND COVID IS SPIKING AGAIN AND 

1464
01:25:58,071 --> 01:25:59,172
PEOPLE WITH SICKLE CELL DISEASE 

1465
01:25:59,172 --> 01:26:01,774
OFTEN WERE NOT ABLE TO STAY AWAY

1466
01:26:01,774 --> 01:26:04,544
FROM THE HOSPITAL AND STAY IN 

1467
01:26:04,544 --> 01:26:05,311
ISOLATION BECAUSE OF THE OTHER 

1468
01:26:05,311 --> 01:26:05,945
THINGS GOING ON WITH SICKLE CELL

1469
01:26:05,945 --> 01:26:16,089
DISEASE.

1470
01:26:18,158 --> 01:26:20,393
THE QUESTION WAS WERE PEOPLE 

1471
01:26:20,393 --> 01:26:21,528
WITH SICKLE CELL AT RISK AND 

1472
01:26:21,528 --> 01:26:24,264
THIS BECAME A REAL OPPORTUNITY 

1473
01:26:24,264 --> 01:26:27,267
AND RESPONSIBILITY FOR SCDAA AND

1474
01:26:27,267 --> 01:26:30,803
THE MEDICAL AND RESEARCH 

1475
01:26:30,803 --> 01:26:33,373
ADVISORY COMMITTEE THAT RAMPED 

1476
01:26:33,373 --> 01:26:34,607
UP FROM MEETING ONCE A YEAR TO 

1477
01:26:34,607 --> 01:26:39,879
ONCE A WEEK AND TRYING TO LEARN 

1478
01:26:39,879 --> 01:26:50,356
FROM AN EFFORT IN COMMUNITY 

1479
01:26:51,891 --> 01:26:53,159
ENGAGEMENT UNLIKE ANYTHING SCDAA

1480
01:26:53,159 --> 01:26:54,260
HAD DONE BEFORE.

1481
01:26:54,260 --> 01:26:58,698
THROUGH THIS WE WERE ALSO 

1482
01:26:58,698 --> 01:27:00,466
PREPARING TOOLS FOR WHAT WE KNEW

1483
01:27:00,466 --> 01:27:03,269
WAS COMING WHICH IS GENE THERAPY

1484
01:27:03,269 --> 01:27:04,704
ANNOUNCEMENTS AND GENE THERAPY 

1485
01:27:04,704 --> 01:27:08,875
WITH GOOD NEWS AND BAD NEWS WAS 

1486
01:27:08,875 --> 01:27:10,210
CAUSING CONFUSION AND EXCITEMENT

1487
01:27:10,210 --> 01:27:10,743
AND PEOPLE NEEDED TO KNOW 

1488
01:27:10,743 --> 01:27:18,284
INFORMATION.

1489
01:27:18,284 --> 01:27:20,820
ANOTHER CONTEXT FOR THOSE 

1490
01:27:20,820 --> 01:27:23,122
INCLINED THE NASEM REPORT THE 

1491
01:27:23,122 --> 01:27:29,963
NATIONAL AQUAKED  -- ACADEMY AND

1492
01:27:29,963 --> 01:27:31,264
MEDICINE CALLED A BLUEPRINT 

1493
01:27:31,264 --> 01:27:33,233
SAYING WHAT WERE NEEDED WERE 

1494
01:27:33,233 --> 01:27:35,935
SHOWN IN THE PILLARS AND E AND F

1495
01:27:35,935 --> 01:27:37,170
WERE ABOUT AWARENESS AND 

1496
01:27:37,170 --> 01:27:43,443
ADDRESSING BARRIERS TO ACCESS.

1497
01:27:43,443 --> 01:27:45,078
FINALLY THERE'S A GENERAL 

1498
01:27:45,078 --> 01:27:48,581
CONTEXT THERE'S A RISE IN 

1499
01:27:48,581 --> 01:27:50,049
AWARENESS OF DISSEMINATION AND 

1500
01:27:50,049 --> 01:27:51,618
IMPLEMENTATION SCIENCE FOR COVID

1501
01:27:51,618 --> 01:27:53,987
VACCINES THIS BECAME IMPORTANT 

1502
01:27:53,987 --> 01:27:58,191
WITH STATEMENTS SUCH AS FROM 

1503
01:27:58,191 --> 01:28:01,060
THIS FAMOUS BALTIMORE PASTOR A 

1504
01:28:01,060 --> 01:28:03,196
MINISTER AND MASTER OF PUBLIC 

1505
01:28:03,196 --> 01:28:05,598
HEALTH AND PREVIOUSLY A FEDERAL 

1506
01:28:05,598 --> 01:28:06,933
HEALTH OFFICIAL SAYING THAT WHEN

1507
01:28:06,933 --> 01:28:08,635
YOU'RE TALKING ABOUT STUFF FOR 

1508
01:28:08,635 --> 01:28:11,271
SOMEBODY'S HEALTH FOR THE 

1509
01:28:11,271 --> 01:28:12,705
MINORITY POPULATION YOU CAN'T 

1510
01:28:12,705 --> 01:28:14,841
JUST DO HERE'S WHAT WE'RE GOING 

1511
01:28:14,841 --> 01:28:17,277
TO DO TO YOU AND HELP YOU.

1512
01:28:17,277 --> 01:28:19,679
HE SAID THAT'S WAY TOO 

1513
01:28:19,679 --> 01:28:20,680
PATERNALISTIC AND HARMFUL 

1514
01:28:20,680 --> 01:28:22,048
THROUGH THE YEARS AND IS NOT 

1515
01:28:22,048 --> 01:28:24,350
GOING TO ADD TO THE SPREAD OF 

1516
01:28:24,350 --> 01:28:25,485
INFORMATION SO MUCH AS IT'S 

1517
01:28:25,485 --> 01:28:27,186
GOING TO ADD TO DISTRUST.

1518
01:28:27,186 --> 01:28:31,257
AND SO THAT'S A QUOTE FROM 

1519
01:28:31,257 --> 01:28:33,960
PASTURE TERRENCE KING IN 

1520
01:28:33,960 --> 01:28:34,227
BALTIMORE.

1521
01:28:34,227 --> 01:28:35,261
AND ONE OF THE THINGS HE WOULD 

1522
01:28:35,261 --> 01:28:39,065
DO IS AS A MINISTER TOO HE WOULD

1523
01:28:39,065 --> 01:28:40,867
COUCH THINGS IN THE SETTING OF 

1524
01:28:40,867 --> 01:28:43,736
FAITH-BASED MESSAGES FOR HIS 

1525
01:28:43,736 --> 01:28:46,739
CONGREGATION AND SAY NOT 

1526
01:28:46,739 --> 01:28:47,740
EVERYTHING THAT COMES AS 

1527
01:28:47,740 --> 01:28:52,211
SALVATION -- NOT EVERYTHING THAT

1528
01:28:52,211 --> 01:28:52,612
KWO

1529
01:28:52,612 --> 01:28:55,281
COMES TO HELP YOU AND EVEN IN 

1530
01:28:55,281 --> 01:29:00,253
THE CASE OF MOSES OR NOAH AS A 

1531
01:29:00,253 --> 01:29:03,589
MAN OF GOD THEY WEREN'T JUST 

1532
01:29:03,589 --> 01:29:05,391
WAITING FOR GOD TO DO SOMETHING 

1533
01:29:05,391 --> 01:29:07,460
THEY HAD TO DO SOMETHING AND FOR

1534
01:29:07,460 --> 01:29:11,597
NOAH HE DIDN'T SAVE HIS FAMILY 

1535
01:29:11,597 --> 01:29:16,202
JUST BY PRAYING, HE HAD TO 

1536
01:29:16,202 --> 01:29:18,504
PHYSICALLY BUILD AN ARK AND HE 

1537
01:29:18,504 --> 01:29:19,672
HAD TO DO A LITTLE EXPERIMENT 

1538
01:29:19,672 --> 01:29:21,641
AND HAD TO SEND OUT BIRDS TO SEE

1539
01:29:21,641 --> 01:29:24,911
IF THEY LANDED ON DRY LAND OR IF

1540
01:29:24,911 --> 01:29:26,946
THEY COULDN'T FIND DRY LAND AND 

1541
01:29:26,946 --> 01:29:27,880
COME BACK SO HIS EXPERIMENT 

1542
01:29:27,880 --> 01:29:30,116
RECORDED IN THE BIBLE IS PART OF

1543
01:29:30,116 --> 01:29:33,519
THIS CREDIT TO HIM AS BEING A 

1544
01:29:33,519 --> 01:29:35,088
MAN OF FAITH.

1545
01:29:35,088 --> 01:29:36,489
PASTOR KING WAS GIVING AN 

1546
01:29:36,489 --> 01:29:38,524
EXAMPLE TO HIS CONGREGATION 

1547
01:29:38,524 --> 01:29:40,226
SOMETIMES YOU HAVE TO USE HUMAN 

1548
01:29:40,226 --> 01:29:41,294
TOOLS TO BE ABLE TO MANIFEST 

1549
01:29:41,294 --> 01:29:46,866
YOUR FAITH.

1550
01:29:46,866 --> 01:29:48,568
DISSEMINATION EXPERIENCES DURING

1551
01:29:48,568 --> 01:29:50,103
THE COVID PANDEMIC BUILT IDEAS 

1552
01:29:50,103 --> 01:29:55,375
OF TRUSTED MESSENGERS, COMMUNITY

1553
01:29:55,375 --> 01:29:56,909
PARTNERSHIP AND TRYING TO 

1554
01:29:56,909 --> 01:29:59,712
ADDRESS RACIAL AND ETHNIC 

1555
01:29:59,712 --> 01:30:00,847
DISPARITIES AS WELL AS ADDRESS 

1556
01:30:00,847 --> 01:30:02,448
THE PARENTS AND CAREGIVERS WHILE

1557
01:30:02,448 --> 01:30:03,416
DOING ALL THIS STUFF.

1558
01:30:03,416 --> 01:30:05,852
SO THESE WERE SOME OF THE TOOLS 

1559
01:30:05,852 --> 01:30:08,921
FROM DISSEMINATION, 

1560
01:30:08,921 --> 01:30:09,522
IMPLEMENTATION SCIENCE THAT 

1561
01:30:09,522 --> 01:30:12,492
SCDAA WAS TRYING TO BUILD IN.

1562
01:30:12,492 --> 01:30:15,261
AND OVER ALL DISSEMINATION 

1563
01:30:15,261 --> 01:30:17,296
SCIENCE IS A YOUNGER FIELD THAN 

1564
01:30:17,296 --> 01:30:18,498
IMPLEMENTATION SCIENCE SHOWN BY 

1565
01:30:18,498 --> 01:30:20,833
THE ICON OF A BUDDING SEED.

1566
01:30:20,833 --> 01:30:24,003
BUT THERE ARE WAYS TO DO AN 

1567
01:30:24,003 --> 01:30:26,806
ACTIVE AND PLANNED SPREAD OF 

1568
01:30:26,806 --> 01:30:28,508
EVIDENCE-BASED INFORMATION WITH 

1569
01:30:28,508 --> 01:30:30,843
DIFFERENT FRAMEWORKS AS SHOWN 

1570
01:30:30,843 --> 01:30:34,580
HERE IN THIS REFERENCE.

1571
01:30:34,580 --> 01:30:36,282
AND THE ONE WE WERE CHOOSING FOR

1572
01:30:36,282 --> 01:30:40,653
SCDAA WAS THIS IDEA OF TRUSTED 

1573
01:30:40,653 --> 01:30:42,455
MESSENGERS BUT ALSO USING 

1574
01:30:42,455 --> 01:30:42,955
SEVERAL FORMATS.

1575
01:30:42,955 --> 01:30:44,957
DIFFERENT MEDIA PATHWAYS.

1576
01:30:44,957 --> 01:30:47,393
SOME WAS COMMUNITY LEADERS, 

1577
01:30:47,393 --> 01:30:49,829
PEERS AND ALSO LOOKING TO THE 

1578
01:30:49,829 --> 01:30:50,730
GATE KEEPERS OF A COMMUNITY.

1579
01:30:50,730 --> 01:30:54,567
AT THE SAME TIME LOOKING AT MASS

1580
01:30:54,567 --> 01:30:57,236
MEDIA, LOCAL MEDIA, ETHNIC 

1581
01:30:57,236 --> 01:31:01,240
MEDIA, SOCIAL MEDIA AND MEMBER 

1582
01:31:01,240 --> 01:31:03,276
ORGANIZATIONS AS WE WERE SEEING 

1583
01:31:03,276 --> 01:31:04,844
ARE LOCALLY PLACED AND HAVE TIES

1584
01:31:04,844 --> 01:31:07,713
TO WHAT'S GOING TO ON WITH THEIR

1585
01:31:07,713 --> 01:31:11,551
STATE OR THEIR COUNTY OR PARISH.

1586
01:31:11,551 --> 01:31:16,489
AND A KEY IDEA IN THIS IS TO 

1587
01:31:16,489 --> 01:31:17,990
LISTEN TO THE PEOPLE, SEE WHAT 

1588
01:31:17,990 --> 01:31:19,826
THEY WANT TO KNOW, ANSWER THOSE 

1589
01:31:19,826 --> 01:31:21,194
QUESTIONS, LISTEN TO THEM AGAIN 

1590
01:31:21,194 --> 01:31:23,062
TO FIND OUT WHAT THEY ARE WANT 

1591
01:31:23,062 --> 01:31:24,697
TO KNOW NEXT AND THEREFORE YOU 

1592
01:31:24,697 --> 01:31:26,032
BECOME TRUSTED BECAUSE YOU'RE 

1593
01:31:26,032 --> 01:31:28,134
ANSWERING PEOPLE'S QUESTIONS 

1594
01:31:28,134 --> 01:31:31,003
OPPOSED TO GIVING ANNOUNCEMENTS 

1595
01:31:31,003 --> 01:31:32,138
TO THINGS PEOPLE DIDN'T REALLY 

1596
01:31:32,138 --> 01:31:33,840
WANT TO KNOW OR WHAT THEY WANTED

1597
01:31:33,840 --> 01:31:35,441
TO KNOW YOU NEVER ANSWERED.

1598
01:31:35,441 --> 01:31:38,010
SO THIS BECAME OUR STRATEGY 

1599
01:31:38,010 --> 01:31:39,312
THROUGH COVID AND THIS BECAME 

1600
01:31:39,312 --> 01:31:40,580
THE GENERAL DISSEMINATION 

1601
01:31:40,580 --> 01:31:42,381
STRATEGY WAS A CONTINUOUS 

1602
01:31:42,381 --> 01:31:43,483
FEEDBACK LOOP OF LISTENING TO 

1603
01:31:43,483 --> 01:31:46,152
WHAT WAS HAPPENING THROUGH THE 

1604
01:31:46,152 --> 01:31:46,819
COMMUNITY-BASED ORGANIZATIONS 

1605
01:31:46,819 --> 01:31:50,189
THROUGH THE MEMBER ORGANIZATIONS

1606
01:31:50,189 --> 01:31:51,023
AS WELL AS THROUGH WHAT WE'RE 

1607
01:31:51,023 --> 01:31:51,524
HEARING FROM DIFFERENT 

1608
01:31:51,524 --> 01:31:58,898
PROVIDERS.

1609
01:31:58,898 --> 01:32:01,634
SOME THINGS WOULD BE GENERATED 

1610
01:32:01,634 --> 01:32:03,269
SUCH AS THIS A STATEMENT ABOUT 

1611
01:32:03,269 --> 01:32:05,371
THE CLINICAL TRIAL PAUSE IN ONE 

1612
01:32:05,371 --> 01:32:06,973
OF THE GENE THERAPY STUDIES DUE 

1613
01:32:06,973 --> 01:32:17,483
TO CASES OF ACUTE MYELOCIDIC 

1614
01:32:19,018 --> 01:32:21,654
LIEUKEMIA AND TRYING TO ADDRESS 

1615
01:32:21,654 --> 01:32:23,256
THE CONCERN WITH FREQUENTLY 

1616
01:32:23,256 --> 01:32:24,056
ASKED QUESTIONS FORMAT AS WELL 

1617
01:32:24,056 --> 01:32:25,291
AS RECOMMENDATIONS.

1618
01:32:25,291 --> 01:32:27,860
I WANT TO ACKNOWLEDGE SEVERAL 

1619
01:32:27,860 --> 01:32:30,830
MEMBERS OF MARAC ARE HERE IN THE

1620
01:32:30,830 --> 01:32:31,097
AUDIENCE.

1621
01:32:31,097 --> 01:32:41,440
THANK YOU VERY MUCH.

1622
01:32:48,781 --> 01:32:51,817
AND HOW CAN WE THE MEMBER 

1623
01:32:51,817 --> 01:32:57,657
ORGANIZATIONS AND USE THE 

1624
01:32:57,657 --> 01:33:07,967
DIFFERENT FORMATS.

1625
01:33:09,302 --> 01:33:11,470
AND USED THAT TO TALK ABOUT GENE

1626
01:33:11,470 --> 01:33:19,512
THERAPY IN A CONCERTED WAY.

1627
01:33:19,512 --> 01:33:21,180
WITH THREE GENE THERAPY MASTER 

1628
01:33:21,180 --> 01:33:24,317
CLASSES TALKING ABOUT WHAT SORTS

1629
01:33:24,317 --> 01:33:26,218
OF ISSUES THERE WERE IN DETAIL 

1630
01:33:26,218 --> 01:33:26,886
WITH OPPORTUNITIES FOR THE 

1631
01:33:26,886 --> 01:33:28,788
MEMBER ORGANIZATIONS AND THE 

1632
01:33:28,788 --> 01:33:30,623
AUDIENCE TO ASK QUESTIONS.

1633
01:33:30,623 --> 01:33:34,794
THERE WAS DURING THE CONVENTION,

1634
01:33:34,794 --> 01:33:36,128
ANNUAL CONVENTION OF SCDAA IN 

1635
01:33:36,128 --> 01:33:37,697
OCTOBER SESSIONS ON GENE THERAPY

1636
01:33:37,697 --> 01:33:39,031
WITH MORE OPPORTUNITIES TO ASK 

1637
01:33:39,031 --> 01:33:42,001
QUESTIONS AND MORE INTERACTIONS 

1638
01:33:42,001 --> 01:33:43,369
AND SCDAA CONTINUED ON WITH 

1639
01:33:43,369 --> 01:33:46,405
DISCUSSION OF THE REPORT ON GENE

1640
01:33:46,405 --> 01:33:47,039
THERAPY THAT TALKED ABOUT COST 

1641
01:33:47,039 --> 01:33:49,875
EFFECTIVENESS.

1642
01:33:49,875 --> 01:33:52,211
AS THIS WAS GOING ON, THERE WAS 

1643
01:33:52,211 --> 01:33:54,447
MORE AND MORE INTERACTION WITH 

1644
01:33:54,447 --> 01:33:54,947
MEDIA.

1645
01:33:54,947 --> 01:33:58,150
MEDIA STARTED COMING TO US 

1646
01:33:58,150 --> 01:34:03,489
ASKING FOR INTERVIEWS AND CBOs 

1647
01:34:03,489 --> 01:34:05,458
WERE ASKING FOR MORE WEBINARS.

1648
01:34:05,458 --> 01:34:07,793
THERE WAS STARTING TO BE DEMAND 

1649
01:34:07,793 --> 01:34:09,996
AND PROVIDERS WERE ASKING AND 

1650
01:34:09,996 --> 01:34:11,364
EXPECTING PATIENTS.

1651
01:34:11,364 --> 01:34:14,300
A SMALL BALL EFFECT WAS 

1652
01:34:14,300 --> 01:34:14,567
HAPPENING.

1653
01:34:14,567 --> 01:34:16,702
BY THE TIME THE ANNOUNCEMENT OF 

1654
01:34:16,702 --> 01:34:19,271
FDA APPROVAL WE WERE MOSTLY 

1655
01:34:19,271 --> 01:34:21,674
READY DECEMBER 8 EXCEPT WE WERE 

1656
01:34:21,674 --> 01:34:23,242
READY FOR ONE TO BE APPROVED AND

1657
01:34:23,242 --> 01:34:24,910
FDA APPROVED TWO.

1658
01:34:24,910 --> 01:34:26,746
WE HAD TO SIT IN THE HALLWAYS OF

1659
01:34:26,746 --> 01:34:31,050
THE ASH MEETING RETYPING SOME OF

1660
01:34:31,050 --> 01:34:32,251
THE STATEMENTS THAT WERE 

1661
01:34:32,251 --> 01:34:35,154
PREPARED FOR RELEASE AND REWORD 

1662
01:34:35,154 --> 01:34:38,090
THEM ABOUT TWO GENE THERAPIES.

1663
01:34:38,090 --> 01:34:40,626
THIS WAS FOLLOWED BY A STATEMENT

1664
01:34:40,626 --> 01:34:43,462
IN THE AFTERNOON LIKE FDA 

1665
01:34:43,462 --> 01:34:44,797
ANNOUNCEMENT AT 9:00 OR 10:00 IN

1666
01:34:44,797 --> 01:34:45,598
THE MORNING.

1667
01:34:45,598 --> 01:34:46,799
IF ANYBODY WANTS TO SEE THAT 

1668
01:34:46,799 --> 01:34:53,139
STATEMENT IT'S STILL ONLINE.

1669
01:34:53,139 --> 01:34:55,908
SPECIFICALLY WE HAD A WARRIOR 

1670
01:34:55,908 --> 01:34:56,308
FAQ.

1671
01:34:56,308 --> 01:34:57,209
SICKLE CELL DISEASE WARRIORS HAD

1672
01:34:57,209 --> 01:34:59,011
SPECIFIC QUESTIONS.

1673
01:34:59,011 --> 01:35:04,150
WE TRIED TO CONDENSE THESE TO 

1674
01:35:04,150 --> 01:35:05,117
UNWUN

1675
01:35:05,117 --> 01:35:06,118
CONDENSE THESE USED BY 

1676
01:35:06,118 --> 01:35:07,920
COMMUNITY-BASED ORGANIZATIONS TO

1677
01:35:07,920 --> 01:35:11,257
TRY TO ADDRESS WHAT PEOPLE 

1678
01:35:11,257 --> 01:35:15,561
WANTED TO KNOW.

1679
01:35:15,561 --> 01:35:17,263
I'LL SKIP THIS IN THE INTEREST 

1680
01:35:17,263 --> 01:35:18,064
OF TIME.

1681
01:35:18,064 --> 01:35:19,665
EVERYONE KNOWS COST IS A BIG 

1682
01:35:19,665 --> 01:35:19,965
ISSUE.

1683
01:35:19,965 --> 01:35:21,033
HERE'S THE STATISTICS OF WHAT 

1684
01:35:21,033 --> 01:35:23,035
KINDS OF THINGS WERE SHOWN AS 

1685
01:35:23,035 --> 01:35:27,306
THE IMPACT MUCH THIS 

1686
01:35:27,306 --> 01:35:30,076
DISSEMINATION CAMPAIGN.

1687
01:35:30,076 --> 01:35:30,976
I'LL SAY THE SICKLE CELL DISEASE

1688
01:35:30,976 --> 01:35:37,349
ASSOCIATION CONTRACTS WITH THE 

1689
01:35:37,349 --> 01:35:39,051
BONIE HENESON GROUP AND WE THANK

1690
01:35:39,051 --> 01:35:44,857
YOU VERY MUCH.

1691
01:35:44,857 --> 01:35:47,359
SO MEDIA OUTREACH, THERE WAS A 

1692
01:35:47,359 --> 01:35:49,261
LOT OF MEDIA APPEARANCES.

1693
01:35:49,261 --> 01:35:51,297
I'M NOT PHOTO GENIC.

1694
01:35:51,297 --> 01:35:53,332
I'D RATHER DO RADIO THAN TV BUT 

1695
01:35:53,332 --> 01:35:56,302
HAVE TO DO TV AND RADIO AND GOT 

1696
01:35:56,302 --> 01:35:59,972
TO DO BLOGS AND GOT TO DO 

1697
01:35:59,972 --> 01:36:00,606
PODCASTS, ALL KINDS OF STUFF 

1698
01:36:00,606 --> 01:36:03,776
WITH OUTLETS THAT NORMALLY DON'T

1699
01:36:03,776 --> 01:36:06,979
SEEM TO PAY ATTENTION TO SICKLE 

1700
01:36:06,979 --> 01:36:10,483
CELL SUCH AS BLOOMBERG AND FOX 

1701
01:36:10,483 --> 01:36:11,650
NEWS AND NPR.

1702
01:36:11,650 --> 01:36:15,287
I TRIED TO DO PITHY STATEMENTS.

1703
01:36:15,287 --> 01:36:17,056
MY PARTNERS ALSO HAD PITHY 

1704
01:36:17,056 --> 01:36:17,356
STATEMENTS.

1705
01:36:17,356 --> 01:36:19,291
THEY WERE MEDIA FRIENDLY.

1706
01:36:19,291 --> 01:36:21,327
WE TRIED TO GET THE WORD OUT A 

1707
01:36:21,327 --> 01:36:22,561
LOT AND 360 IS A LOT OF MEDIA 

1708
01:36:22,561 --> 01:36:32,772
APPEARANCES.

1709
01:36:36,575 --> 01:36:39,111
SOME CAME OUT IN PRINT AND 400 

1710
01:36:39,111 --> 01:36:42,648
MILLION PEOPLE WERE PROBABLY 

1711
01:36:42,648 --> 01:36:44,016
REACHED AND THIS IS SOCIAL MEDIA

1712
01:36:44,016 --> 01:36:48,420
IN DIFFERENT OUTLETS YOU SEE THE

1713
01:36:48,420 --> 01:36:51,290
NUMBERS WE'RE REACHING THROUGH 

1714
01:36:51,290 --> 01:36:53,259
FACEBOOK AND X FORMERLY TWITTER 

1715
01:36:53,259 --> 01:36:57,963
AND SOCIAL MEDIA IMPRESSIONS.

1716
01:36:57,963 --> 01:37:00,132
AS WELL AS WEBSITE ENGAGEMENT 

1717
01:37:00,132 --> 01:37:03,269
WITH THOUSANDS OF VIEWS, E-MAIL 

1718
01:37:03,269 --> 01:37:05,037
LETTERS, E-MAIL NEWSLETTER 

1719
01:37:05,037 --> 01:37:07,373
COMING OUT WEEKLY WITH 10,000 

1720
01:37:07,373 --> 01:37:10,109
AND MASTER CLASSES WHICH 

1721
01:37:10,109 --> 01:37:12,545
CONTINUED ON TO 2024 WITH 310 

1722
01:37:12,545 --> 01:37:17,316
ATTENDEES ON A MASTER CLASS 

1723
01:37:17,316 --> 01:37:18,984
ONLINE LIVE AND ANOTHER 1,000 

1724
01:37:18,984 --> 01:37:20,452
AFTERWARDS.

1725
01:37:20,452 --> 01:37:21,220
>> TWO MINUTES.

1726
01:37:21,220 --> 01:37:22,655
>> OKAY.

1727
01:37:22,655 --> 01:37:24,423
NEXT STEPS ARE TO TRY TO 

1728
01:37:24,423 --> 01:37:26,625
CONTINUE THE WORK WITH 

1729
01:37:26,625 --> 01:37:30,830
COLLABORATION WITH THE 

1730
01:37:30,830 --> 01:37:33,599
DEMOCRATIZING WITH GENE THERAPY 

1731
01:37:33,599 --> 01:37:35,301
EDUCATION AND WE'RE PLEASED AT 

1732
01:37:35,301 --> 01:37:37,002
THE EFFORTS GOING ON THERE 

1733
01:37:37,002 --> 01:37:39,271
TRYING TO BRING MORE COMMUNITY 

1734
01:37:39,271 --> 01:37:40,239
LINKAGE THERE.

1735
01:37:40,239 --> 01:37:41,674
EDUCATING HEALTH CARE PROVIDERS 

1736
01:37:41,674 --> 01:37:44,376
BECAUSE WE'RE STARTING TO HEAR 

1737
01:37:44,376 --> 01:37:46,045
SOME OF THE COMMUNITY-BASED 

1738
01:37:46,045 --> 01:37:47,780
ORGANIZATIONS AND PATIENTS ARE 

1739
01:37:47,780 --> 01:37:49,315
BETTER INFORMED THAN THEIR 

1740
01:37:49,315 --> 01:37:49,849
DOCTORS ARE.

1741
01:37:49,849 --> 01:37:50,950
THERE'S CONTINUED MASTER 

1742
01:37:50,950 --> 01:37:51,183
CLASSES.

1743
01:37:51,183 --> 01:37:53,853
I'LL PUT IN A PLUG FOR THE NEXT 

1744
01:37:53,853 --> 01:37:56,522
SCDAA ANNUAL CONVENTION IN 

1745
01:37:56,522 --> 01:37:57,756
OCTOBER IN ATLANTA AND THERE'LL 

1746
01:37:57,756 --> 01:38:04,296
BE MASTER CLASS THERE TOO.

1747
01:38:04,296 --> 01:38:05,264
THAT IS IT.

1748
01:38:05,264 --> 01:38:15,808
I'LL BE HAPPY TO TAKE QUESTIONS.

1749
01:38:16,342 --> 01:38:18,077
>> GREG COTTO.

1750
01:38:18,077 --> 01:38:19,278
LEWIS, WONDERFUL PERSPECTIVE AND

1751
01:38:19,278 --> 01:38:21,280
THANK YOU FOR THE REPRESENTATION

1752
01:38:21,280 --> 01:38:23,282
OF THE SICKLE CELL COMMUNITY TO 

1753
01:38:23,282 --> 01:38:25,317
THE POPULAR MEDIA.

1754
01:38:25,317 --> 01:38:26,986
ONE OF THE IMMEDIATE 

1755
01:38:26,986 --> 01:38:30,990
CONSEQUENCES OF SUCH A MEDIA 

1756
01:38:30,990 --> 01:38:34,193
BLITZ ABOUT GENE THERAPY FOR 

1757
01:38:34,193 --> 01:38:35,127
SICKLE CELL DISEASE WAS 

1758
01:38:35,127 --> 01:38:36,595
POTENTIAL IMPRESSION TO ROLL 

1759
01:38:36,595 --> 01:38:39,265
BACK FUNDING FOR INVESTIGATING 

1760
01:38:39,265 --> 01:38:41,467
OTHER THERAPIES FOR SICKLE CELL 

1761
01:38:41,467 --> 01:38:41,700
DISEASE.

1762
01:38:41,700 --> 01:38:43,936
I JUST WONDERED IF YOU HAD 

1763
01:38:43,936 --> 01:38:46,639
IMPRESSION OR FEEDBACK FROM THAT

1764
01:38:46,639 --> 01:38:47,840
KIND OF THING BECAUSE THERE WERE

1765
01:38:47,840 --> 01:38:49,875
SO MANY TAKEN BY THE MESSAGE 

1766
01:38:49,875 --> 01:38:52,278
THAT WE DON'T NEED TREATMENT FOR

1767
01:38:52,278 --> 01:38:53,779
SICKLE CELL DISEASE ANYMORE.

1768
01:38:53,779 --> 01:38:54,980
EVERYBODY'S GOING TO BE CURED.

1769
01:38:54,980 --> 01:38:56,081
>> EXACTLY.

1770
01:38:56,081 --> 01:38:57,082
THANK YOU FOR THAT COMMENT.

1771
01:38:57,082 --> 01:39:01,220
WHEN YOU DO A SINGLE SOUND BITE 

1772
01:39:01,220 --> 01:39:02,388
THE SECOND POINT GETS LOST BUT 

1773
01:39:02,388 --> 01:39:04,390
TRY TO PUSH THE IDEA WHILE 

1774
01:39:04,390 --> 01:39:05,858
GETTING READY FOR GENE THERAPY 

1775
01:39:05,858 --> 01:39:07,593
YOU HAVE TO STAY IN GOOD SHAPE.

1776
01:39:07,593 --> 01:39:10,663
WHILE GETTING READY FOR GENE 

1777
01:39:10,663 --> 01:39:12,097
THERAPY, PEOPLE NEED TO BE 

1778
01:39:12,097 --> 01:39:14,533
PROTECTING THEIR ORGANS AND NEED

1779
01:39:14,533 --> 01:39:16,068
TO HAVE GOOD HEALTH CARE 

1780
01:39:16,068 --> 01:39:17,069
SYSTEMS, EMERGENCY DEPARTMENTS, 

1781
01:39:17,069 --> 01:39:17,469
EVERYTHING ELSE.

1782
01:39:17,469 --> 01:39:19,371
THERE'S A STRONG MESSAGE IN 

1783
01:39:19,371 --> 01:39:23,542
THERE WE TRY NOT TO GET IT LOST 

1784
01:39:23,542 --> 01:39:24,977
IN THE HUBBUB.

1785
01:39:24,977 --> 01:39:26,679
ALSO, POST GENE THERAPY PEOPLE 

1786
01:39:26,679 --> 01:39:29,748
NEED FOLLOW-UP AND IF IT FAILS 

1787
01:39:29,748 --> 01:39:31,016
FOR SOME REASON YOU STILL NEED 

1788
01:39:31,016 --> 01:39:31,650
SICKLE CELL CARE.

1789
01:39:31,650 --> 01:39:39,024
>> THANKS, LEWIS.

1790
01:39:39,024 --> 01:39:39,625
FANTAS

1791
01:39:39,625 --> 01:39:42,995
FANTASTIC.

1792
01:39:42,995 --> 01:39:44,964
RIMAS FROM CARING CROSS.

1793
01:39:44,964 --> 01:39:48,233
THE THEME WAS IT'S EASIER TO 

1794
01:39:48,233 --> 01:39:49,935
PRE-BUNK THAN DEBUNK SO I WANT 

1795
01:39:49,935 --> 01:39:53,672
TO THANK YOU AND APPLAUD YOUR 

1796
01:39:53,672 --> 01:39:54,840
ORGANIZATION WHETHER IT'S 

1797
01:39:54,840 --> 01:39:55,841
COVID-19 OR CELL THERAPIES TO 

1798
01:39:55,841 --> 01:40:01,647
KEEP THE MESSAGE GOING FORWARD.

1799
01:40:01,647 --> 01:40:03,916
HOW DO YOU SEE A SUSTAINABLE 

1800
01:40:03,916 --> 01:40:08,187
PRO-SCIENCE MESSAGE COMING?

1801
01:40:08,187 --> 01:40:10,155
>> WORKING HARD.

1802
01:40:10,155 --> 01:40:11,256
CONTINUE TO TRY.

1803
01:40:11,256 --> 01:40:13,025
IT'S FABULOUS WORKING WITH 

1804
01:40:13,025 --> 01:40:15,194
COMMUNITY-BASED ORGANIZATIONS, I

1805
01:40:15,194 --> 01:40:15,995
HAVE TO SAY THAT COMPARED TO 

1806
01:40:15,995 --> 01:40:19,565
EARLIER PARTS OF MY CAREER AS AN

1807
01:40:19,565 --> 01:40:22,935
M.D. Ph.D. SITTING IN MY LAB FOR

1808
01:40:22,935 --> 01:40:24,169
WEEKS AT A TIME IT'S BEEN SO 

1809
01:40:24,169 --> 01:40:30,175
DIFFERENT AND SO INTERESTING.

1810
01:40:30,175 --> 01:40:32,011
>> I WANT TO ADD THAT AS
PART OF

1811
01:40:32,011 --> 01:40:35,881
OUR EDUCATION AND MESSAGING WE 

1812
01:40:35,881 --> 01:40:38,183
HAVE TWO NEW TREATMENTS AND WE 

1813
01:40:38,183 --> 01:40:40,919
UNDERSTAND THE WAY THINGS GO AND

1814
01:40:40,919 --> 01:40:42,721
EXPECT TO HAVE MORE AND ALSO 

1815
01:40:42,721 --> 01:40:44,289
ENOUGH HAVING DISCUSSIONS ABOUT 

1816
01:40:44,289 --> 01:40:46,959
WHAT'S HAPPENING IN THE 

1817
01:40:46,959 --> 01:40:47,960
REGENERATIVE SPACE.

1818
01:40:47,960 --> 01:40:52,097
SO I KNOW WE GET A CURATIVE 

1819
01:40:52,097 --> 01:40:53,499
TREATMENT AND HAVE DAMAGE IN THE

1820
01:40:53,499 --> 01:40:53,732
BODY.

1821
01:40:53,732 --> 01:40:56,435
WHO IS WORKING ON THAT TO FIX 

1822
01:40:56,435 --> 01:40:56,635
THAT.

1823
01:40:56,635 --> 01:40:58,504
THAT'S ALSO BEEN PART OF OUR 

1824
01:40:58,504 --> 01:41:01,240
EDUCATION AND MESSAGING.

1825
01:41:01,240 --> 01:41:02,074
AS WELL AS SAYING WE UNDERSTAND 

1826
01:41:02,074 --> 01:41:05,110
THIS IS REALLY BIG BUT WE ARE 

1827
01:41:05,110 --> 01:41:06,845
THE FIRST AND THERE ARE MANY 

1828
01:41:06,845 --> 01:41:10,783
OTHER DISEASES TO FOLLOW AND SO 

1829
01:41:10,783 --> 01:41:12,351
WHAT WE'RE HOPING TO DO IS 

1830
01:41:12,351 --> 01:41:13,719
EVERYBODY HEARS THAT AND GET A 

1831
01:41:13,719 --> 01:41:16,822
ROAR NOT ONLY FOR SICKLE BUT WE 

1832
01:41:16,822 --> 01:41:19,058
CAN START GETTING OTHER DISEASES

1833
01:41:19,058 --> 01:41:21,160
FOR US NOT TO BE SILOED.

1834
01:41:21,160 --> 01:41:22,995
WE'RE JUST FIRST AND I THINK OUR

1835
01:41:22,995 --> 01:41:26,999
COMMUNITY HAS DONE A GREAT JOB 

1836
01:41:26,999 --> 01:41:30,335
OF SAYING THAT, RESPECTING THAT 

1837
01:41:30,335 --> 01:41:31,303
MESSAGE AND THAT IMPORTANCE OF 

1838
01:41:31,303 --> 01:41:34,640
THAT AND GETTING THE MESSAGE 

1839
01:41:34,640 --> 01:41:36,608
OUT.

1840
01:41:36,608 --> 01:41:37,076
>> THANK YOU.

1841
01:41:37,076 --> 01:41:39,978
>> THANK YOU.

1842
01:41:39,978 --> 01:41:40,379
ONLINE?

1843
01:41:40,379 --> 01:41:43,682
>> YES, FROM FRANCINE
BAKER.

1844
01:41:43,682 --> 01:41:47,286
THANK YOU DR. HSU FOR ALL YOU DO

1845
01:41:47,286 --> 01:41:49,922
ON BEHALF OF THE SICKLE CELL 

1846
01:41:49,922 --> 01:41:52,558
COMMUNITY AND THERE WILL BE 

1847
01:41:52,558 --> 01:41:53,392
INDIVIDUALS WHO NEVER GET GENE 

1848
01:41:53,392 --> 01:41:55,828
CELL THERAPY.

1849
01:41:55,828 --> 01:41:59,298
WE SHOULD NOT FORGET ABOUT THOSE

1850
01:41:59,298 --> 01:41:59,832
WARRI

1851
01:41:59,832 --> 01:42:00,099
WARRIORS.

1852
01:42:00,099 --> 01:42:01,100
>> INDEED.

1853
01:42:01,100 --> 01:42:02,067
THANK YOU.

1854
01:42:02,067 --> 01:42:07,806
>> THANK YOU, AGAIN.

1855
01:42:07,806 --> 01:42:08,373
>> OKAY.

1856
01:42:08,373 --> 01:42:10,676
SO WE'RE GOING TO BREAK FOR 

1857
01:42:10,676 --> 01:42:12,678
ANOTHER 10 MINUTES OR SO.

1858
01:42:12,678 --> 01:42:15,747
LET'S GET BACK AT 10:50 HERE 

1859
01:42:15,747 --> 01:42:16,849
PROMPTLY AND WE'LL START WITH 

1860
01:42:16,849 --> 01:42:17,216
THE NEXT TALKS.

1861
01:42:17,216 --> 01:42:19,017
 

1862
01:42:23,379 --> 01:42:24,180
>> OKAY.

1863
01:42:24,180 --> 01:42:26,348
IF WE CAN HAVE OUR SEATS BACK.

1864
01:42:26,348 --> 01:42:33,789
WE'RE GOING TO START OUR NEXT 

1865
01:42:33,789 --> 01:42:43,866
TA

1866
01:42:45,501 --> 01:42:46,435
TALK.

1867
01:42:46,435 --> 01:42:56,979
WE'LL START WITH OUR NEXT TALK, 

1868
01:42:57,713 --> 01:43:00,149
EMERGING SICKLE CELL DISEASE 

1869
01:43:00,149 --> 01:43:00,783
MODIFYING THERAPIES.

1870
01:43:00,783 --> 01:43:05,688
DR. MODUPE IDOWU.

1871
01:43:05,688 --> 01:43:08,290
GO AHEAD, PLEASE START.

1872
01:43:08,290 --> 01:43:11,460
>> I THANK THE ORGANIZERS
FOR 

1873
01:43:11,460 --> 01:43:13,229
THIS PROGRAM AND INVITING ME TO 

1874
01:43:13,229 --> 01:43:16,632
PRESENT TODAY AND MY TOPIC TODAY

1875
01:43:16,632 --> 01:43:17,900
IS EMERGING SICKLE CELL DISEASE 

1876
01:43:17,900 --> 01:43:28,244
MODIFYING THERAPIES.

1877
01:43:40,022 --> 01:43:46,161
THESE ARE MY DISCLOSURES.

1878
01:43:46,161 --> 01:43:50,099
SICKLE CELL DISEASE IS A SEVERE,

1879
01:43:50,099 --> 01:43:55,070
CHRONIC HEMOLYTIC CONDITION BY 

1880
01:43:55,070 --> 01:43:58,941
ORGAN DYSFUNCTION PUNCTUATED 

1881
01:43:58,941 --> 01:44:09,285
WITH ACUTE EVENTS AND VASO 

1882
01:44:09,285 --> 01:44:12,087
OCCLUSIVE PHENOTYPE AND ANEMIC 

1883
01:44:12,087 --> 01:44:21,830
PHENOTYPE AND THERE'S LOW NITRIC

1884
01:44:21,830 --> 01:44:26,335
OXIDE AND AS SEEN ON THE DIAGRAM

1885
01:44:26,335 --> 01:44:29,905
LEADING TO COMPLICATIONS CAUSED 

1886
01:44:29,905 --> 01:44:37,146
BY VASCULOPATHY AND STROKE.

1887
01:44:37,146 --> 01:44:39,281
THE PATIENTS HAVE MULTIORGAN 

1888
01:44:39,281 --> 01:44:43,118
FAILURE EASILY EVEN WHEN THEY 

1889
01:44:43,118 --> 01:44:44,853
DON'T COME IN WITH VASO 

1890
01:44:44,853 --> 01:44:46,488
OCCLUSIVE CRISES AS THOSE THAT 

1891
01:44:46,488 --> 01:44:48,624
HAVE THE PHENOTYPE AS SEEN ON 

1892
01:44:48,624 --> 01:44:51,594
THE RIGHT OF THE DIAGRAM.

1893
01:44:51,594 --> 01:44:53,262
THOUGH SOME ARE RIGHT IN THE 

1894
01:44:53,262 --> 01:45:01,904
MIDDLE AND HAVE BOTH PHENOTYPES.

1895
01:45:01,904 --> 01:45:09,511
6: 

1896
01:45:09,511 --> 01:45:11,614
THE CHOICE OF THERAPIES DEPENDS 

1897
01:45:11,614 --> 01:45:17,586
ON THE COMPLICATIONS.

1898
01:45:17,586 --> 01:45:25,594
WHAT I MEANT IS THE HEMOLYTIC 

1899
01:45:25,594 --> 01:45:31,467
HAVE THE LOW NITRIC OXIDE 

1900
01:45:31,467 --> 01:45:33,802
LEADING TO DYSFUNCTION AND VASO 

1901
01:45:33,802 --> 01:45:36,805
OCCLUSIVE ONES HAVE HIGH LEVELS 

1902
01:45:36,805 --> 01:45:39,274
OF LEUKOCYTE COUNTS AND HIGH 

1903
01:45:39,274 --> 01:45:41,377
HEMOGLOBIN LEVELS AND 

1904
01:45:41,377 --> 01:45:43,212
COMPLICATIONS BECAUSE OF 

1905
01:45:43,212 --> 01:45:49,084
OBSTRUCTION OF CAPILLARIES BY 

1906
01:45:49,084 --> 01:45:53,255
ERYTHROCYTES AND HAVE THE 

1907
01:45:53,255 --> 01:45:54,523
COMPLICATIONS AS ACUTE CHEST 

1908
01:45:54,523 --> 01:46:01,997
SYNDROME AND AVN AND ACUTE PAIN 

1909
01:46:01,997 --> 01:46:02,898
SYNDROMES.

1910
01:46:02,898 --> 01:46:04,800
THERE ARE MULTIPLE BIOLOGICAL 

1911
01:46:04,800 --> 01:46:05,801
TARGETS.

1912
01:46:05,801 --> 01:46:07,936
THOSE HIGHLIGHTED IN BLUE FDA 

1913
01:46:07,936 --> 01:46:11,740
APPROVED AND YOU CAN SEE WE CAN 

1914
01:46:11,740 --> 01:46:13,909
TARGET ANYWHERE FROM THE DNA AND

1915
01:46:13,909 --> 01:46:17,146
PROTEINS AND CELLULAR LEVEL AND 

1916
01:46:17,146 --> 01:46:21,684
CAN ALSO TARGET THE VASCULAR AND

1917
01:46:21,684 --> 01:46:25,220
DO THE VASCULAR PLASMA AND END 

1918
01:46:25,220 --> 01:46:25,421
ORGAN.

1919
01:46:25,421 --> 01:46:29,425
I WILL TALK MORE ABOUT TARGETING

1920
01:46:29,425 --> 01:46:33,729
ON THE CELLULAR LEVEL AND USING 

1921
01:46:33,729 --> 01:46:37,933
THE AFFINITY BINDING TYPE OF 

1922
01:46:37,933 --> 01:46:45,774
THERAPIES.

1923
01:46:45,774 --> 01:46:46,375
THERE ARE MANY SICKLE CELL 

1924
01:46:46,375 --> 01:46:48,444
DISEASE CLINICAL COMPLICATIONS 

1925
01:46:48,444 --> 01:46:51,747
DIVIDED INTO ACUTE AND CHRONIC 

1926
01:46:51,747 --> 01:46:52,081
COMPLICATIONS.

1927
01:46:52,081 --> 01:46:56,385
WE SHOULD ALSO NOTE THAT SOME OF

1928
01:46:56,385 --> 01:46:58,687
THE THERAPIES ONLY EFFECT SOME 

1929
01:46:58,687 --> 01:47:01,490
OF THE COMPLICATIONS BUT AS LONG

1930
01:47:01,490 --> 01:47:04,626
AS THEY ARE EFFECTIVE FOR TWO OR

1931
01:47:04,626 --> 01:47:06,061
MORE OF THESE OR ONE OR MORE OF 

1932
01:47:06,061 --> 01:47:07,396
THE COMPLICATIONS, THEN WE 

1933
01:47:07,396 --> 01:47:09,865
SHOULD BE ABLE TO USE THEM IN 

1934
01:47:09,865 --> 01:47:13,135
CLINICAL PRACTICE.

1935
01:47:13,135 --> 01:47:14,970
AS WE DEVELOP NEW THERAPIES WE 

1936
01:47:14,970 --> 01:47:16,638
SHOULD FIND OUT WHICH ONES ARE 

1937
01:47:16,638 --> 01:47:17,106
GOOD FOR EACH OF THE 

1938
01:47:17,106 --> 01:47:26,782
COMPLICATIONS.

1939
01:47:26,782 --> 01:47:32,621
THESE ARE THE FDA APPROVED 

1940
01:47:32,621 --> 01:47:34,156
THERAPIES.

1941
01:47:34,156 --> 01:47:44,666
HYDROXYUREA, L GLUTAMINE AND 

1942
01:47:51,306 --> 01:48:01,683
CRIZANLIZUMAB IS GOOD FOR 

1943
01:48:15,964 --> 01:48:19,501
PRIAPISM AND IT DEPENDS ON THE 

1944
01:48:19,501 --> 01:48:20,369
PHENOTYPE THE PATIENT IS 

1945
01:48:20,369 --> 01:48:22,137
EXHIBITING AND THESE ARE THE 

1946
01:48:22,137 --> 01:48:24,773
EXAMPLES HOW TO USE THE FDA 

1947
01:48:24,773 --> 01:48:25,808
APPROVED THERAPIES FOR ALL 

1948
01:48:25,808 --> 01:48:28,577
PATIENTS 9 MONTHS AND OLDER THEY

1949
01:48:28,577 --> 01:48:33,916
SHOULD BE PROBABLY OFFERED 

1950
01:48:33,916 --> 01:48:44,459
HYDROXYUREA IF WE WANT TO LIMIT 

1951
01:48:45,527 --> 01:48:46,929
TRANSFUSION WE WANT TO KEEP THE 

1952
01:48:46,929 --> 01:48:48,130
HEMOGLOBIN IN A HIGH STEADY 

1953
01:48:48,130 --> 01:48:54,436
STATE THEN WE NEED TO CONSIDER 

1954
01:48:54,436 --> 01:49:04,980
USING KRIZ --  THE MEDICINE AND 

1955
01:49:23,131 --> 01:49:27,936
THERE'S BEEN CASE HISTORIES OF 

1956
01:49:27,936 --> 01:49:33,909
PATIENTS DOING BETTER ON 

1957
01:49:33,909 --> 01:49:44,353
VOXELOTOR AND HYDROXYUREA.

1958
01:49:49,091 --> 01:49:51,927
PED AND THIS PATIENT PRESENTED 

1959
01:49:51,927 --> 01:49:57,099
WITH NORMAL LEVEL OF T195 AND 

1960
01:49:57,099 --> 01:50:00,369
CREATINE 0.4 AND COULD NOT 

1961
01:50:00,369 --> 01:50:00,936
TOLERATE HYDROXYUREA AND 

1962
01:50:00,936 --> 01:50:02,571
INTERESTED IN NEWER TARGETED 

1963
01:50:02,571 --> 01:50:05,908
THERAPIES THAT CAN IMPROVE HER 

1964
01:50:05,908 --> 01:50:08,443
HEMOGLOBIN AND ENERGY LEVEL.

1965
01:50:08,443 --> 01:50:12,414
A HEMATOLOGIST DISCUSSED 

1966
01:50:12,414 --> 01:50:17,286
PYRUVATE KINASE ACTIVATORS AND 

1967
01:50:17,286 --> 01:50:24,226
GBT601 TO HER.

1968
01:50:24,226 --> 01:50:29,898
SO NOW I'LL TALK ABOUT THE 

1969
01:50:29,898 --> 01:50:32,567
EMERGING INVESTIGATIONAL 

1970
01:50:32,567 --> 01:50:33,168
PHARMACOLOGIC THERAPIES FOR 

1971
01:50:33,168 --> 01:50:33,902
SICKLE CELL DISEASE.

1972
01:50:33,902 --> 01:50:37,906
I APOLOGIZE MY SLIDES ARE NOT 

1973
01:50:37,906 --> 01:50:39,942
PROJECTING WELL WHEN THEY 

1974
01:50:39,942 --> 01:50:40,275
TRANSITIONED.

1975
01:50:40,275 --> 01:50:45,614
THEY WERE ANOTHER COLOR 

1976
01:50:45,614 --> 01:50:45,881
ACTUALLY.

1977
01:50:45,881 --> 01:50:49,885
THE DIRECT HEMOGLOBIN AS 

1978
01:50:49,885 --> 01:50:55,324
POLYMERIZATION INHIBITOR AND 

1979
01:50:55,324 --> 01:50:57,926
PYRUVATE KINASE ACTIVATORS AND 

1980
01:50:57,926 --> 01:51:03,165
THE THERAPIES THAT INDUCE 

1981
01:51:03,165 --> 01:51:06,802
HEMOGLOBIN F ARE MENTIONED IN 

1982
01:51:06,802 --> 01:51:13,909
SITU AND ADDRESS CELL ADHESIONS 

1983
01:51:13,909 --> 01:51:24,419
AND AND THERE'S AN INHIBITOR 

1984
01:51:24,820 --> 01:51:33,462
WITH A HIGHER AMOUNT THAN 

1985
01:51:33,462 --> 01:51:33,729
VOXELOTOR.

1986
01:51:33,729 --> 01:51:39,968
IT COULD IMPROVE CLINICAL 

1987
01:51:39,968 --> 01:51:49,344
OUTCOME THERE'S A STUDY TO 

1988
01:51:49,344 --> 01:51:59,755
EVALUATE THE EFFECT OF 

1989
01:52:01,790 --> 01:52:04,860
OSIVELOTOR TREATMENT AND 

1990
01:52:04,860 --> 01:52:07,996
IMPROVEMENTS WERE SEEN TO WEEK 

1991
01:52:07,996 --> 01:52:12,534
12 ON THE STUDY.

1992
01:52:12,534 --> 01:52:13,935
THE MEAN HEMOGLOBIN INCREASE IN 

1993
01:52:13,935 --> 01:52:17,305
THE 100 MILLIGRAM GROUP OF 

1994
01:52:17,305 --> 01:52:20,842
OSIVELOTOR WAS IMPROVED AND ONE 

1995
01:52:20,842 --> 01:52:23,145
MILLIGRAM GROUP WAS 1.317.

1996
01:52:23,145 --> 01:52:31,920
THIS SLIDE BASICALLY SHOWED THE 

1997
01:52:31,920 --> 01:52:38,393
IMPROVEMENT IN HEMOGLOBIN.

1998
01:52:38,393 --> 01:52:42,764
AND HEMOLYSIS WAS OBSERVED AT 

1999
01:52:42,764 --> 01:52:53,008
WEEK 6 AND 12.

2000
01:52:57,646 --> 01:52:59,748
 AND THE INDICATORS OF OXYGEN 

2001
01:52:59,748 --> 01:53:02,184
SUGGESTED NO IMPAIRMENT AND NO 

2002
01:53:02,184 --> 01:53:08,390
INCREASE IN EQUAL LEVELS OF VOC 

2003
01:53:08,390 --> 01:53:17,265
AND IMPROVED IN HEMOGLOBIN S 

2004
01:53:17,265 --> 01:53:19,501
POLYMERIZATION.

2005
01:53:19,501 --> 01:53:21,703
OSIVELOTOR HAS GONE TO PHASE III

2006
01:53:21,703 --> 01:53:23,839
STUDY AT THIS POINT.

2007
01:53:23,839 --> 01:53:27,943
NOW I'LL MOVE TO PYRUVATE KINASE

2008
01:53:27,943 --> 01:53:29,511
ACTIVATOR.

2009
01:53:29,511 --> 01:53:31,446
IT'S A KEY ENZYME IN RBC 

2010
01:53:31,446 --> 01:53:33,915
METABOLISM AND PRODUCTION OF 

2011
01:53:33,915 --> 01:53:35,784
ATP.

2012
01:53:35,784 --> 01:53:36,751
IN OUR PATIENT WITH SICKLE CELL 

2013
01:53:36,751 --> 01:53:39,988
DISEASE, STABILITY ARE REDUCED 

2014
01:53:39,988 --> 01:53:45,293
COMPARED TO HEALTHY CONTROLS.

2015
01:53:45,293 --> 01:53:50,165
AND THIS DIAGRAM SHOWED THE PK 

2016
01:53:50,165 --> 01:53:51,733
ACTIVATORS HAVE THE POTENTIAL OF

2017
01:53:51,733 --> 01:53:56,505
HAVING A DUAL MECHANISM OF 

2018
01:53:56,505 --> 01:54:00,976
INCREASING ATP AND 1 AND 3DPG 

2019
01:54:00,976 --> 01:54:02,878
AND INCREASE THE ENERGY AND 

2020
01:54:02,878 --> 01:54:06,915
HEMOGLOBIN AFFINITY THERE BE 

2021
01:54:06,915 --> 01:54:07,349
REDUCING HEMOGLOBIN 

2022
01:54:07,349 --> 01:54:13,388
POLYMERIZATION.

2023
01:54:13,388 --> 01:54:14,122
THE AGENCY UNDER INVESTIGATION 

2024
01:54:14,122 --> 01:54:21,163
INCLUDE MITAPIVAT AND AG946.

2025
01:54:21,163 --> 01:54:24,699
THIS WAS PRESENT THE RISE OF 

2026
01:54:24,699 --> 01:54:28,236
PHASE 2 RESULTS IN DECEMBER OF 

2027
01:54:28,236 --> 01:54:35,944
2023.

2028
01:54:35,944 --> 01:54:40,448
MITAPIVAT IS A FIRST-IN CLASS 

2029
01:54:40,448 --> 01:54:42,918
ORAL SMALL MOLECULE UNDER 

2030
01:54:42,918 --> 01:54:43,618
INVESTIGATION FOR THE TREATMENT 

2031
01:54:43,618 --> 01:54:44,219
OF SICKLE CELL DISEASE.

2032
01:54:44,219 --> 01:54:48,723
THIS HAS BEEN APPROVED IN THE 

2033
01:54:48,723 --> 01:54:53,495
U.S. FOR HEMOLYTIC ANEMIA AND PK

2034
01:54:53,495 --> 01:54:57,032
DEFICIENCY IN E.U. AND U.K. FOR 

2035
01:54:57,032 --> 01:55:01,403
TREATMENT OF THESE PATIENTS.

2036
01:55:01,403 --> 01:55:05,840
SO IN THE RISE UP STUDY WE FOUND

2037
01:55:05,840 --> 01:55:11,146
THERE WAS DOSE DEPENDENT 

2038
01:55:11,146 --> 01:55:20,789
DECREASE IN 2,3DPG LEVELS AND 42

2039
01:55:20,789 --> 01:55:23,959
PRIMARY EFFICACY END POINT WE 

2040
01:55:23,959 --> 01:55:27,629
FOUND OUT THAT 46.2% OF PATIENTS

2041
01:55:27,629 --> 01:55:33,668
IN THE 50 MILLIGRAM ON AND 50% 

2042
01:55:33,668 --> 01:55:39,608
OF PATIENTS IN THE OTHER ARM HAD

2043
01:55:39,608 --> 01:55:42,777
INCREASE IN HEMOGLOBIN COMPARED 

2044
01:55:42,777 --> 01:55:45,580
TO THE PLACEBO GROUP AND THE 

2045
01:55:45,580 --> 01:55:49,618
INCREASE IN THE 50 MILLIGRAM WAS

2046
01:55:49,618 --> 01:56:00,161
1.11 GRAM PER DECILITER AND THE 

2047
01:56:06,334 --> 01:56:09,604
DIFFERENCES RESPECTIVELY 

2048
01:56:09,604 --> 01:56:10,772
COMPARED TO 1.71 IN THE PLACEBO 

2049
01:56:10,772 --> 01:56:18,446
GROUP.

2050
01:56:18,446 --> 01:56:19,247
THIS DIAGRAM SHOWS THE SAME 

2051
01:56:19,247 --> 01:56:29,758
INFORMATION I JUST PRESENTED.

2052
01:56:30,659 --> 01:56:31,826
THIS IS THE SAME INFORMATION 

2053
01:56:31,826 --> 01:56:34,596
GIVEN THAT THERE WAS A REDUCTION

2054
01:56:34,596 --> 01:56:38,967
IN ANALYZED RATE OF SICKLE CELL 

2055
01:56:38,967 --> 01:56:45,307
PAIN CRISIS AND MITAPIVAT WAS 

2056
01:56:45,307 --> 01:56:46,608
CONSISTENT WITH PREVIOUSLY 

2057
01:56:46,608 --> 01:56:49,344
REPORTED DATA IN SAFETY AND RISE

2058
01:56:49,344 --> 01:56:57,552
UP IS NOW IN PHASE 3.

2059
01:56:57,552 --> 01:57:01,923
WE ALSO PUBLISHED A PHASE 1 

2060
01:57:01,923 --> 01:57:06,761
STUDY OF OVE TAVOPIVA IN BLOOD 

2061
01:57:06,761 --> 01:57:08,963
ADVANCES AND IN THE PHASE 1 

2062
01:57:08,963 --> 01:57:13,234
STUDY 36 WERE ENROLLED IN FOUR 

2063
01:57:13,234 --> 01:57:17,772
COHORTS FOR THE ETAPIVAT AND 

2064
01:57:17,772 --> 01:57:19,741
THEY RECEIVED IT ONCE DAILY FOR 

2065
01:57:19,741 --> 01:57:21,142
12 WEEKS AND CONSISTENT WITH THE

2066
01:57:21,142 --> 01:57:23,078
MECHANISM OF ACTION THERE WAS 

2067
01:57:23,078 --> 01:57:27,415
INCREASE IN ATP, DECREASING TO 

2068
01:57:27,415 --> 01:57:31,419
2,3 DPG AND INCREASE OF ONE GRAM

2069
01:57:31,419 --> 01:57:35,423
IN THE HEMOGLOBIN LEVEL IN 73% 

2070
01:57:35,423 --> 01:57:37,625
OF THE PATIENT DURING TREATMENT 

2071
01:57:37,625 --> 01:57:40,061
PERIOD AND MARKERS WERE 

2072
01:57:40,061 --> 01:57:46,701
DECREASED AND IN THIS STUDY OF 

2073
01:57:46,701 --> 01:57:47,936
ETAPIVAT IN SICKLE CELL DISEASE 

2074
01:57:47,936 --> 01:57:52,540
ONE MILLIGRAM DAILY FOR 12 WEEKS

2075
01:57:52,540 --> 01:57:56,111
WAS WELL TOLERATED AND DECREASED

2076
01:57:56,111 --> 01:57:58,146
HEMOLYSIS.

2077
01:57:58,146 --> 01:58:03,818
AND BACK TO THE CASE I 

2078
01:58:03,818 --> 01:58:04,085
PRESENTED.

2079
01:58:04,085 --> 01:58:09,090
AND IT IMPROVED TO 9 IN 10 AND 

2080
01:58:09,090 --> 01:58:11,226
DECREASED SIGNIFICANTLY AND 

2081
01:58:11,226 --> 01:58:15,163
ENERGY LEVEL IMPROVED.

2082
01:58:15,163 --> 01:58:17,599
SHE WAS ABLE TO CONTINUE COLLEGE

2083
01:58:17,599 --> 01:58:18,199
UNINTERRUPTED AND HAD GOOD 

2084
01:58:18,199 --> 01:58:28,276
QUALITY OF LIFE.

2085
01:58:28,276 --> 01:58:33,148
I'LL SAY ONE STATEMENT IT'S ALSO

2086
01:58:33,148 --> 01:58:33,915
IN CLINICAL TRIAL RIGHT NOW 

2087
01:58:33,915 --> 01:58:36,017
PHASE 1 AND 2 AND BASICALLY 

2088
01:58:36,017 --> 01:58:40,822
GIVEN ONCE OR TWICE PER WEEK.

2089
01:58:40,822 --> 01:58:42,857
IT'S FOUND TO INDUCE FETAL 

2090
01:58:42,857 --> 01:58:46,194
HEMOGLOBIN AND SEEMS SAFE SO 

2091
01:58:46,194 --> 01:58:55,203
FAR.

2092
01:58:55,203 --> 01:59:04,078
AND INCLAUMAB TO REDUCE VOC.

2093
01:59:04,078 --> 01:59:07,215
THE MODIFYING THERAPIES SHOULD 

2094
01:59:07,215 --> 01:59:09,184
BE BASED ON PATIENT AND 

2095
01:59:09,184 --> 01:59:12,420
CAREGIVER PREFERENCES.

2096
01:59:12,420 --> 01:59:14,522
WE SHOULD LOOK AT THE ORAL 

2097
01:59:14,522 --> 01:59:20,295
VERSUS IV AND WHETHER THEY'RE 

2098
01:59:20,295 --> 01:59:22,630
OPEN TO CLINICAL TRIALS.

2099
01:59:22,630 --> 01:59:24,232
THERE'S PSYCHOSOCIAL 

2100
01:59:24,232 --> 01:59:25,700
CONSIDERATION AND MONITORING AND

2101
01:59:25,700 --> 01:59:28,803
ADVERSE EVENTS FROM THERAPY WILL

2102
01:59:28,803 --> 01:59:30,472
HELP IMPROVE ADHERENCE AND 

2103
01:59:30,472 --> 01:59:31,172
IMPROVE OVER ALL TREATMENT 

2104
01:59:31,172 --> 01:59:37,912
OUTCOME.

2105
01:59:37,912 --> 01:59:41,049
AND THIS IS OUR TREATED SICKLE 

2106
01:59:41,049 --> 01:59:42,217
CELL PATIENTS SAME AS TREATED 

2107
01:59:42,217 --> 01:59:46,921
EARLIER DEPENDING ON THEIR 

2108
01:59:46,921 --> 01:59:51,793
PHENOTYPE IF THEY'RE MORE HEMEC 

2109
01:59:51,793 --> 01:59:55,330
CONSIDERING THERAPIES MORE THAN 

2110
01:59:55,330 --> 01:59:55,630
OTHERS.

2111
01:59:55,630 --> 01:59:57,398
AND TURN TO FDA APPROVED 

2112
01:59:57,398 --> 01:59:59,467
THERAPIES AND IDEA THE CLINICAL 

2113
01:59:59,467 --> 02:00:06,107
TRIALS THAT ARE OPEN AT MY SITE.

2114
02:00:06,107 --> 02:00:07,442
SO IN CONCLUSION, SICKLE CELL 

2115
02:00:07,442 --> 02:00:09,377
DISEASE IS A SINGLE GENE 

2116
02:00:09,377 --> 02:00:11,045
DISORDER WITH A COMPLEX 

2117
02:00:11,045 --> 02:00:12,247
PHENOTYPIC EXPRESSION.

2118
02:00:12,247 --> 02:00:13,948
SICKLE CELL DISEASE IS A 

2119
02:00:13,948 --> 02:00:15,917
DISABLING CONDITION THAT AFFECT 

2120
02:00:15,917 --> 02:00:18,686
MULTIPLE ORGAN SYSTEMS.

2121
02:00:18,686 --> 02:00:21,923
THERE'S MULTIPLE POTENTIAL 

2122
02:00:21,923 --> 02:00:23,057
TARGETS IN THE DEVELOPMENT OF 

2123
02:00:23,057 --> 02:00:26,561
THERAPEUTIC AGENTS DEPENDING ON 

2124
02:00:26,561 --> 02:00:27,862
SICKLE CELL DISEASE PHENOTYPIC 

2125
02:00:27,862 --> 02:00:30,164
EXPRESSION AND COMPLICATIONS.

2126
02:00:30,164 --> 02:00:32,433
EACH OF THE THERAPIES CAN BE 

2127
02:00:32,433 --> 02:00:35,670
GIVEN ALONE OR IN COMBINATION 

2128
02:00:35,670 --> 02:00:40,608
WITH HYDROXYUREA THERAPY.

2129
02:00:40,608 --> 02:00:43,177
AND OTHERS ARE UNDER CLINICAL 

2130
02:00:43,177 --> 02:00:45,313
INVESTIGATION WITH SOME 

2131
02:00:45,313 --> 02:00:45,747
ENCOURAGING RESULTS.

2132
02:00:45,747 --> 02:00:51,786
THANK YOU FOR YOUR ATTENTION.

2133
02:00:51,786 --> 02:00:52,820
>> THANK YOU.

2134
02:00:52,820 --> 02:00:54,455
SO FOR THE SAKE OF TIME, I THINK

2135
02:00:54,455 --> 02:00:56,057
WE'RE GOING TO MOVE ON.

2136
02:00:56,057 --> 02:01:05,900
ARE THERE ANY ONLINE QUESTIONS 

2137
02:01:05,900 --> 02:01:07,569
OR COMMENTS?

2138
02:01:07,569 --> 02:01:07,769
NONE.

2139
02:01:07,769 --> 02:01:10,972
OKAY, LET'S MOVE ON TO OUR NEXT 

2140
02:01:10,972 --> 02:01:13,708
TALK BY ZACHARY RAMSAY THE 

2141
02:01:13,708 --> 02:01:16,678
INFLUENCE OF SEX HORMONES IN 

2142
02:01:16,678 --> 02:01:17,845
SICKLE CELL PAIN IN WOMEN FROM 

2143
02:01:17,845 --> 02:01:18,446
CARIBBEAN INSTITUTE OF HEALTH 

2144
02:01:18,446 --> 02:01:28,623
RESEARCH.

2145
02:01:29,357 --> 02:01:35,797
>> WE HAVE NOW FINISHED
DATA 

2146
02:01:35,797 --> 02:01:36,097
COLLECTION.

2147
02:01:36,097 --> 02:01:38,633
SO SORRY BUT THESE ARE NOT THE 

2148
02:01:38,633 --> 02:01:41,903
LATEST SLIDES THAT ARE UPDATED.

2149
02:01:41,903 --> 02:01:46,774
IS IT POSSIBILITY TO CHECK BACK 

2150
02:01:46,774 --> 02:01:56,818
WITH WHAT'S ON THE REPOSITORY?

2151
02:01:56,818 --> 02:01:57,085
ALL RIGHT.

2152
02:01:57,085 --> 02:01:57,952
I'LL GO AHEAD.

2153
02:01:57,952 --> 02:02:00,254
IN OUR PREVIOUS WORK IN JAMAICA 

2154
02:02:00,254 --> 02:02:01,856
WE HAVE FOUND WOMEN WITH SICKLE 

2155
02:02:01,856 --> 02:02:04,892
CELL DISEASE ARE NOTED TO HAVE 

2156
02:02:04,892 --> 02:02:09,931
HIGHER ODDS OF NEUROPATHIC PAIN 

2157
02:02:09,931 --> 02:02:13,935
AND TO BE MORE SENSITIVE TO 

2158
02:02:13,935 --> 02:02:17,105
PRESSURE TO PAINFUL STIMULI AND 

2159
02:02:17,105 --> 02:02:22,343
IN MENSTRUAL STUDIES WE HAVE 

2160
02:02:22,343 --> 02:02:23,111
FOUND THAT WOMEN WITH SICKLE 

2161
02:02:23,111 --> 02:02:27,649
CELL DISEASE ARE TO NOTED TO 

2162
02:02:27,649 --> 02:02:29,250
HAVE VASO OCCLUSIVE PAIN FOUND 

2163
02:02:29,250 --> 02:02:30,451
TO BE TEMPORARILY ASSOCIATED 

2164
02:02:30,451 --> 02:02:33,187
WITH THE ONSET OF THEIR MENSES 

2165
02:02:33,187 --> 02:02:37,058
AND FOUND HORMONAL 

2166
02:02:37,058 --> 02:02:39,260
CONTRACEPTIVES HAVE BEEN SHOWN 

2167
02:02:39,260 --> 02:02:42,096
TO INCREASE THE RACE OF VASO 

2168
02:02:42,096 --> 02:02:42,397
CRISIS.

2169
02:02:42,397 --> 02:02:45,366
AND WE FOUND HIGH ESTRADIOL 

2170
02:02:45,366 --> 02:02:49,637
LEVELS ARE ASSOCIATED WITH 

2171
02:02:49,637 --> 02:02:53,074
DECREASED PAIN THRESHOLDS AND 

2172
02:02:53,074 --> 02:02:53,975
PROGESTERONE LEVELS HAVE AFFECT 

2173
02:02:53,975 --> 02:02:55,843
IN REGULATION OF PAIN IN THE 

2174
02:02:55,843 --> 02:02:56,577
LUTEAL PHASE.

2175
02:02:56,577 --> 02:03:01,315
THESE FINDINGS SUGGEST THERE MAY

2176
02:03:01,315 --> 02:03:02,750
BE A NEUROLOGICAL LINK BETWEEN 

2177
02:03:02,750 --> 02:03:03,618
SEX HORMONES AND SICKLE CELL 

2178
02:03:03,618 --> 02:03:04,652
DISEASE PAIN AND WANTED TO 

2179
02:03:04,652 --> 02:03:08,523
INVESTIGATE THAT FURTHER.

2180
02:03:08,523 --> 02:03:09,924
NOW, THERE ARE SOME VERY 

2181
02:03:09,924 --> 02:03:12,326
IMPORTANT CONFOUNDERS WE HAVE TO

2182
02:03:12,326 --> 02:03:15,229
CONSIDER WHEN TRYING TO ASSESS 

2183
02:03:15,229 --> 02:03:16,864
THIS RELATIONSHIP.

2184
02:03:16,864 --> 02:03:18,032
FIRSTLY, SLEEP, DEPRESSION AND 

2185
02:03:18,032 --> 02:03:22,537
ANXIETY ARE KNOWN TO HAVE WELL 

2186
02:03:22,537 --> 02:03:24,105
ESTABLISHED LINKS BETWEEN SICKLE

2187
02:03:24,105 --> 02:03:25,940
CELL DISEASE PAIN AND 

2188
02:03:25,940 --> 02:03:27,642
SENSITIZATION AS WELL AS TO BE 

2189
02:03:27,642 --> 02:03:29,077
LINKED WITH SEX HORMONES.

2190
02:03:29,077 --> 02:03:32,580
WE COLLECTED THE DATA DURING THE

2191
02:03:32,580 --> 02:03:33,715
COVID-19 PANDEMIC AND WE FELT WE

2192
02:03:33,715 --> 02:03:36,517
COULD NOT IGNORE THE DATA 

2193
02:03:36,517 --> 02:03:38,586
BECAUSE BOTH COVID-19 INFECTION 

2194
02:03:38,586 --> 02:03:41,923
AND THE VACCINES HAVE BEEN 

2195
02:03:41,923 --> 02:03:44,025
ASSOCIATED WITH ABNORMAL MENSES 

2196
02:03:44,025 --> 02:03:49,931
AND PERIPHERAL NEUROPATHY.

2197
02:03:49,931 --> 02:03:51,632
HYDROXYUREA HAS BENEFITS IN 

2198
02:03:51,632 --> 02:03:53,768
TERMS OF VASO OCCLUSIVE CRISIS 

2199
02:03:53,768 --> 02:03:56,637
BUT FOUND TO BE RESULT IN 

2200
02:03:56,637 --> 02:03:58,573
PERIPHERAL NEUROPATHY WHEN USED 

2201
02:03:58,573 --> 02:04:00,241
ON PATIENTS WHO DO NOT HAVE 

2202
02:04:00,241 --> 02:04:01,409
SICKLE CELL DISEASE.

2203
02:04:01,409 --> 02:04:09,917
WE HAVE TO CONSIDER DIFFERENT 

2204
02:04:09,917 --> 02:04:13,921
HEMATOLOGICAL FACTORS AND AFFECT

2205
02:04:13,921 --> 02:04:15,656
CELLULAR ADHESION.

2206
02:04:15,656 --> 02:04:19,794
SO THE AIM OF THE RESEARCH WAS 

2207
02:04:19,794 --> 02:04:21,929
TO INVESTIGATE VARIATION LEVELS 

2208
02:04:21,929 --> 02:04:24,999
OF SEX HORMONES ASSOCIATED WITH 

2209
02:04:24,999 --> 02:04:27,335
PAIN DETECTION THRESHOLDS AS 

2210
02:04:27,335 --> 02:04:28,770
MEASURED BY QUANTITATIVE SENSORY

2211
02:04:28,770 --> 02:04:29,403
TESTING AMONG WOMEN WITH SICKLE 

2212
02:04:29,403 --> 02:04:31,472
CELL DISEASE.

2213
02:04:31,472 --> 02:04:34,876
AND WE PERFORMED A PROSPECT ITCH

2214
02:04:34,876 --> 02:04:38,579
COHORT STUDY IN JAMAICA AND 

2215
02:04:38,579 --> 02:04:40,014
INCLUDED WOMEN WHO HAD SICKLE 

2216
02:04:40,014 --> 02:04:41,115
CELL DISEASE WHO WERE 18 YEARS 

2217
02:04:41,115 --> 02:04:42,450
OR OLDER.

2218
02:04:42,450 --> 02:04:44,752
IF THEY HAD REGULAR MENSES AND 

2219
02:04:44,752 --> 02:04:47,088
INCLUDED THEM IF THEY WERE 

2220
02:04:47,088 --> 02:04:52,994
PREGNANT AND HAD A HISTORY OF 

2221
02:04:52,994 --> 02:04:54,762
HYSTERECTOMY AND HAD A CRISIS AT

2222
02:04:54,762 --> 02:04:58,466
THE TIME OF THEIR VISIT OR 

2223
02:04:58,466 --> 02:05:04,505
UNDOCUMENTED COGNITIVE DEFICITS 

2224
02:05:04,505 --> 02:05:07,508
OR WERE ON CONTRACEPTIVES IN THE

2225
02:05:07,508 --> 02:05:08,943
LAST THREE MONTHS.

2226
02:05:08,943 --> 02:05:09,577
THESE WERE THE MEASUREMENTS 

2227
02:05:09,577 --> 02:05:13,514
PERFORMED.

2228
02:05:13,514 --> 02:05:17,084
AND THE MEASUREMENTS WERE BASED 

2229
02:05:17,084 --> 02:05:21,923
ON THE EXPERTS' RECOMMENDED 

2230
02:05:21,923 --> 02:05:23,391
SCHEDULE TO MINIMIZE THE 

2231
02:05:23,391 --> 02:05:24,458
VARIABILITY BETWEEN PERSONS.

2232
02:05:24,458 --> 02:05:29,063
WE PERFORMED A FOLLICULAR PHASE 

2233
02:05:29,063 --> 02:05:32,033
VISIT BETWEEN DAY 6 TO 11 OF THE

2234
02:05:32,033 --> 02:05:33,901
MENSTRUAL PSYCH AND LUTEAL PHASE

2235
02:05:33,901 --> 02:05:36,037
17 TO 21.

2236
02:05:36,037 --> 02:05:39,540
WE ASSESSED FOR THE PROBABLE 

2237
02:05:39,540 --> 02:05:42,910
PRESENCE OF NEUROPATHIC PAIN AND

2238
02:05:42,910 --> 02:05:45,713
LOOKED AT THE FREQUENCY AND 

2239
02:05:45,713 --> 02:05:47,548
SEVERITY OF THE VASO OCCLUSIVE 

2240
02:05:47,548 --> 02:05:50,918
CRISIS USING THE ASK ME PAIN 

2241
02:05:50,918 --> 02:05:57,124
EPISODE AND LOOKED AT OTHER 

2242
02:05:57,124 --> 02:06:00,661
PSYCHOSOCIAL AND CONFOUNDERS AND

2243
02:06:00,661 --> 02:06:04,699
PERFORMED QUANTITATIVE SENSORY 

2244
02:06:04,699 --> 02:06:06,701
TESTING AND THERMAL TESTING AT 

2245
02:06:06,701 --> 02:06:09,470
THE FOREARM AND LEG AND LOOKED 

2246
02:06:09,470 --> 02:06:13,007
AT SEX HORMONES AS WELL AS THE 

2247
02:06:13,007 --> 02:06:16,310
COMPLETE BLOOD COUNT AND 

2248
02:06:16,310 --> 02:06:17,078
RETICULOSITE COUNT.

2249
02:06:17,078 --> 02:06:20,081
WE DID A PREGNANCY TEST AND 

2250
02:06:20,081 --> 02:06:21,816
LOOKED AT THEIR DEMOGRAPHIC AND 

2251
02:06:21,816 --> 02:06:25,920
MEDICAL HISTORY AND LOOKED AT 

2252
02:06:25,920 --> 02:06:29,090
DEPRESSION, ANXIETY AND 

2253
02:06:29,090 --> 02:06:29,924
DYSMENORRHEA USING VALIDATED 

2254
02:06:29,924 --> 02:06:33,361
QUESTIONNAIRES.

2255
02:06:33,361 --> 02:06:38,099
IN TERMS OF STATISTICAL METHODS 

2256
02:06:38,099 --> 02:06:40,568
WE HAD LIKELIHOOD ESTIMATION.

2257
02:06:40,568 --> 02:06:43,170
THE PRIMARY OUTCOMES WE LOOKED 

2258
02:06:43,170 --> 02:06:45,506
AT THE MEAN OF THREE TRIALS FOR 

2259
02:06:45,506 --> 02:06:47,408
PRESSURE PAIN THRESHOLD AND HEAT

2260
02:06:47,408 --> 02:06:49,343
PAIN THRESHOLD AT UPPER AND 

2261
02:06:49,343 --> 02:06:50,077
LOWER LIMB.

2262
02:06:50,077 --> 02:06:52,513
WE USED RANDOM INTERCEPTS AT THE

2263
02:06:52,513 --> 02:06:53,147
PARTICIPANT LEVEL.

2264
02:06:53,147 --> 02:06:54,582
CONSENT USE RANDOM SLOPES 

2265
02:06:54,582 --> 02:06:56,884
BECAUSE THEY DIDN'T IMPROVE THE 

2266
02:06:56,884 --> 02:07:00,087
MODELS AND WE ASSESSED 

2267
02:07:00,087 --> 02:07:01,956
INTERRUPTIONS USING MARGINAL 

2268
02:07:01,956 --> 02:07:04,392
EFFECTS AND VERY IMPORTANTLY WE 

2269
02:07:04,392 --> 02:07:05,960
CAPTURED THE TEMPORAL 

2270
02:07:05,960 --> 02:07:06,627
RELATIONSHIPS OF THE 

2271
02:07:06,627 --> 02:07:10,765
MEASUREMENTS BY TAKING THE 

2272
02:07:10,765 --> 02:07:11,666
NUMBER OF DAYS BETWEEN THE 

2273
02:07:11,666 --> 02:07:13,334
MEASUREMENT AND THE FIRST DAY OF

2274
02:07:13,334 --> 02:07:14,969
THEIR LAST MENSES.

2275
02:07:14,969 --> 02:07:17,939
WHAT WE DID WAS STANDARDIZED IT 

2276
02:07:17,939 --> 02:07:22,944
BY VIVDIVIDING IT BY THE LENGTH 

2277
02:07:22,944 --> 02:07:23,711
THEIR MENSTRUAL CYCLE.

2278
02:07:23,711 --> 02:07:25,947
WE DIDN'T HAVE A FORMAL WAY OF 

2279
02:07:25,947 --> 02:07:28,015
VALIDATING THEY WERE ACTUALLY IN

2280
02:07:28,015 --> 02:07:31,385
THE MENSTRUAL CYCLE PHASE WE PER

2281
02:07:31,385 --> 02:07:35,990
ASSUMED THEY WERE IN AND 

2282
02:07:35,990 --> 02:07:37,158
CALCULATED Z SCORES OF HEAT PAIN

2283
02:07:37,158 --> 02:07:40,995
THRESHOLD AND NORMATIVE VALUES 

2284
02:07:40,995 --> 02:07:49,170
OF AFRICAN AMERICAN CYCLES AND 

2285
02:07:49,170 --> 02:07:54,408
WE LOOKED AT OFF YOU'LLATER 

2286
02:07:54,408 --> 02:07:58,479
CYCLES.

2287
02:07:58,479 --> 02:08:01,215
AND WE INCLUDED 125 AND 103 

2288
02:08:01,215 --> 02:08:06,220
COMPLETED BOTH VISITS.

2289
02:08:06,220 --> 02:08:09,623
THE MEAN AGE WAS 29 YEARS, 

2290
02:08:09,623 --> 02:08:11,993
APPROXIMATELY 79% OF WOMEN HAD A

2291
02:08:11,993 --> 02:08:16,197
SEVERE GENOTYPE.

2292
02:08:16,197 --> 02:08:17,531
APPROXIMATELY HALF HAD A 

2293
02:08:17,531 --> 02:08:21,936
COVID-19 VACCINE AND 18% HAD A 

2294
02:08:21,936 --> 02:08:24,505
POSITIVE COVID-19 DIAGNOSIS AND 

2295
02:08:24,505 --> 02:08:25,539
SIGNIFICANT TO THOSE HAVING 

2296
02:08:25,539 --> 02:08:34,615
FIBROIDS.

2297
02:08:34,615 --> 02:08:38,052
AND THE MEDIAN CYCLE WAS 28.

2298
02:08:38,052 --> 02:08:41,956
YOU CAN SEE THE DYSMENORRHEA AND

2299
02:08:41,956 --> 02:08:43,924
SEVERITY SCORES ARE IN 

2300
02:08:43,924 --> 02:08:45,359
COMPARISON TO THE REFERENCE 

2301
02:08:45,359 --> 02:08:45,993
POPULATIONS IN THOSE VALIDATION 

2302
02:08:45,993 --> 02:08:49,163
STUDIES.

2303
02:08:49,163 --> 02:08:59,607
AND OF NOTE ABOUT 73% HAD 

2304
02:09:08,249 --> 02:09:18,325
CYCLES.

2305
02:09:20,728 --> 02:09:24,665
 OVULATE AND THIS WAS EXPECTED 

2306
02:09:24,665 --> 02:09:29,904
IN PROGESTERONE LEVELS.

2307
02:09:29,904 --> 02:09:32,239
ESTRADIOL REMAINED THE SAME.

2308
02:09:32,239 --> 02:09:35,776
COMPARED TO ETHNIC REFERENCE 

2309
02:09:35,776 --> 02:09:38,846
MEANS WERE LOWER BUT THE ETHNIC 

2310
02:09:38,846 --> 02:09:39,780
REFERENCE STILL DID FALL WITHIN 

2311
02:09:39,780 --> 02:09:50,324
THE RANGE OF VALUES WE RECORDED.

2312
02:09:54,895 --> 02:09:56,497
AND THERE WERE NO SIGNIFICANT 

2313
02:09:56,497 --> 02:09:57,965
DIFFERENCES RECORDED HEREBY.

2314
02:09:57,965 --> 02:10:08,109
-- HERE.

2315
02:10:41,642 --> 02:10:44,812
AND HIGHER ESTRADIOL LEVELS WERE

2316
02:10:44,812 --> 02:10:45,913
ASSOCIATED WITH LOWER MEAN PAIN 

2317
02:10:45,913 --> 02:10:47,314
THRESHOLD AND INTERACTION WITH 

2318
02:10:47,314 --> 02:10:49,917
TIME I'LL EXPLAIN SHORTLY.

2319
02:10:49,917 --> 02:10:53,120
IN ADDITION, THE PRESENCE OF OFF

2320
02:10:53,120 --> 02:10:54,955
LATER CYCLES AND HYDROXYUREA USE

2321
02:10:54,955 --> 02:10:56,490
AND COVID-19 DIAGNOSIS IN THE 

2322
02:10:56,490 --> 02:11:01,462
LAST SIX MONTHS WERE ASSOCIATED 

2323
02:11:01,462 --> 02:11:02,029
WITH HEAT PAIN THRESHOLD AS 

2324
02:11:02,029 --> 02:11:11,572
WELL.

2325
02:11:11,572 --> 02:11:16,377
AND THERE'S FIXED AND RANDOM 

2326
02:11:16,377 --> 02:11:21,048
EFFECTS BY ESTRADIOL LEVELS APPS

2327
02:11:21,048 --> 02:11:25,586
AND AS THEY GO UP THE DETECTION 

2328
02:11:25,586 --> 02:11:31,792
LEVELS GO DOWN BEING NOCICEPTIC 

2329
02:11:31,792 --> 02:11:33,427
AND LOOKING AT THE PAIN 

2330
02:11:33,427 --> 02:11:35,329
THRESHOLD BY ESTRADIOL AND THE 

2331
02:11:35,329 --> 02:11:38,799
DAYS IN THE MENSTRUAL CYCLE THAT

2332
02:11:38,799 --> 02:11:40,034
HAVE BEEN STANDARDIZED.

2333
02:11:40,034 --> 02:11:42,937
YOU CAN SEE BASICALLY IF THERE 

2334
02:11:42,937 --> 02:11:44,972
WAS NO INTERACTION THE COLORED 

2335
02:11:44,972 --> 02:11:46,240
LINE WOULD BE STRAIGHT, 

2336
02:11:46,240 --> 02:11:46,941
VERTICAL.

2337
02:11:46,941 --> 02:11:52,313
FOR EACH VALUE OF ESTRADIOL OR 

2338
02:11:52,313 --> 02:11:54,148
MARGIN OF ESTRADIOL YOU'D GET 

2339
02:11:54,148 --> 02:11:56,150
THE SAME PREDICTIVE VALUE.

2340
02:11:56,150 --> 02:11:57,451
BECAUSE THERE'S AN INTERACTION 

2341
02:11:57,451 --> 02:11:58,886
THE LINES BECOME CURVED.

2342
02:11:58,886 --> 02:12:01,956
YOU CAN SEE FOR THE SAME VALUE 

2343
02:12:01,956 --> 02:12:06,427
OF ESTRADIOL THE PREDICTED VALUE

2344
02:12:06,427 --> 02:12:07,428
BECOMES HIGHER AT LATER TIMES IN

2345
02:12:07,428 --> 02:12:14,001
THE MENSTRUAL CYCLE.

2346
02:12:14,001 --> 02:12:17,771
BETWEEN 0 AND 0.1 STANDARDIZED 

2347
02:12:17,771 --> 02:12:20,040
DAYS IS 36 TO 37 BUT THE SAME 

2348
02:12:20,040 --> 02:12:25,980
VALUE BETWEEN 0.7 AND 0.8 IS 

2349
02:12:25,980 --> 02:12:31,118
BETWEEN 43 AND 44.

2350
02:12:31,118 --> 02:12:35,022
WE FOUND ESTRADIOL IS 

2351
02:12:35,022 --> 02:12:35,689
PRO-NOCICEPTIVE AND THE AFFECT 

2352
02:12:35,689 --> 02:12:39,526
VARIES BY TIME.

2353
02:12:39,526 --> 02:12:41,295
THE EFFECT WAS HIGHER EARLIER 

2354
02:12:41,295 --> 02:12:44,632
TIMES IN THE MENSTRUAL CYCLE AND

2355
02:12:44,632 --> 02:12:46,767
WE FOUND IT WITH OUR SENSITIVITY

2356
02:12:46,767 --> 02:12:47,968
ANALYSIS AS WELL.

2357
02:12:47,968 --> 02:12:49,136
OF COURSE THE TEMPORAL 

2358
02:12:49,136 --> 02:12:51,538
RELATIONSHIP OF PAIN IS KNOWN.

2359
02:12:51,538 --> 02:12:54,908
I MENTIONED THE LANDMARK STUDY 

2360
02:12:54,908 --> 02:12:57,878
FINDING APPROXIMATELY ONE-THIRD 

2361
02:12:57,878 --> 02:12:58,646
OF WOMEN WITH SICKLE CELL 

2362
02:12:58,646 --> 02:13:00,748
DISEASE EXPERIENCED VOC PAIN 

2363
02:13:00,748 --> 02:13:03,517
AROUND THE TIME OF THEIR MENSES.

2364
02:13:03,517 --> 02:13:05,319
WE DID ANTICIPATE FINDINGS WOULD

2365
02:13:05,319 --> 02:13:07,688
BE MORE POTENTIATED AT EARLIER 

2366
02:13:07,688 --> 02:13:09,757
STAGES OF THE MENSTRUAL CYCLE.

2367
02:13:09,757 --> 02:13:12,526
I SHOULD MENTION THOUGH THAT 

2368
02:13:12,526 --> 02:13:14,261
ESTRADIOL LEVELS CERTAINLY DO 

2369
02:13:14,261 --> 02:13:17,965
NOT PROVIDE AN EXPLANATION FOR 

2370
02:13:17,965 --> 02:13:21,001
THE TEMPORAL NATURE OF PAIN 

2371
02:13:21,001 --> 02:13:21,702
BECAUSE ESTRADIOL WAS LOWEST 

2372
02:13:21,702 --> 02:13:32,146
AROUND THE TIME OF MENSES.

2373
02:13:35,883 --> 02:13:38,252
AND WE'D HAVE TO MEASURE THEM AT

2374
02:13:38,252 --> 02:13:39,353
DIFFERENT TIME POINTS IN THE 

2375
02:13:39,353 --> 02:13:41,588
MENSTRUAL CYCLE BUT THE GOOD 

2376
02:13:41,588 --> 02:13:44,124
POINT IS WE HAVE PRELIMINARY 

2377
02:13:44,124 --> 02:13:45,926
EVIDENCE TO SUPPORT ESTRADIOL IN

2378
02:13:45,926 --> 02:13:47,728
ITS ROLE IN NOCICEPTION IN WOMEN

2379
02:13:47,728 --> 02:13:58,172
WITH SICKLE CELL DISEASE.

2380
02:14:12,019 --> 02:14:13,153
 WE CAN INVESTIGATE THEIR ROLE 

2381
02:14:13,153 --> 02:14:17,157
IN WOMEN WITH REFRACTORY 

2382
02:14:17,157 --> 02:14:27,701
NEUROPATHIC PAIN FOR REFRACTORY 

2383
02:14:36,477 --> 02:14:37,945
CYCLICAL  PAIN AND HYDROXYUREA 

2384
02:14:37,945 --> 02:14:40,681
WAS ASSOCIATED WITH LOWER PAIN 

2385
02:14:40,681 --> 02:14:41,215
DETECTION LEVELS AND PAIN 

2386
02:14:41,215 --> 02:14:49,990
SENSITIZATION.

2387
02:14:49,990 --> 02:14:53,193
IN JAMAICA WE OFFER HYDROXYUREA 

2388
02:14:53,193 --> 02:14:56,497
SO WE MAY SEE A RELATIONSHIP 

2389
02:14:56,497 --> 02:14:57,931
BETWEEN HIGHER PAIN SEVERITY AND

2390
02:14:57,931 --> 02:15:03,704
PAIN SENSITIZATION.

2391
02:15:03,704 --> 02:15:09,777
AND WE NOTED THERE WAS AN 

2392
02:15:09,777 --> 02:15:20,287
INCREASE IN IN HYPOTHESIS AND 

2393
02:15:23,223 --> 02:15:26,593
THERE'S VASO OCCLUSIVE CRISIS AS

2394
02:15:26,593 --> 02:15:29,563
THEY AGE AND PERIPHERAL 

2395
02:15:29,563 --> 02:15:33,934
NEUROPATHY COULD BE RELATED TO 

2396
02:15:33,934 --> 02:15:38,472
POST INFECTIOUS IMMUNE 

2397
02:15:38,472 --> 02:15:40,407
DYSREGULATION.

2398
02:15:40,407 --> 02:15:42,643
PARADOXICALLY WE FOUND A 

2399
02:15:42,643 --> 02:15:43,811
PROBABLE DIAGNOSIS OF NEURO 

2400
02:15:43,811 --> 02:15:46,313
PATHIC PAIN WERE ASSOCIATEDS 

2401
02:15:46,313 --> 02:15:48,649
WITH HIGHER PAIN THRESHOLDS AND 

2402
02:15:48,649 --> 02:15:52,152
SHOULD BE NOTES THE ISP DOES 

2403
02:15:52,152 --> 02:15:55,222
ROYCE NEGATIVE SYMPTOMS AS PART 

2404
02:15:55,222 --> 02:15:56,056
OF NEUROPATHIC PAIN.

2405
02:15:56,056 --> 02:15:57,791
THAT'S ONE POSSIBLE EXPLANATION.

2406
02:15:57,791 --> 02:16:01,061
ADDITIONALLY IN A NUMBER OF 

2407
02:16:01,061 --> 02:16:02,563
STUDIES IT DOESN'T CORRELATE 

2408
02:16:02,563 --> 02:16:07,401
WELL WITH NEUROPATHIC PAIN AND 

2409
02:16:07,401 --> 02:16:11,138
MORE A MEASURE OF FIBER 

2410
02:16:11,138 --> 02:16:12,306
NEUOPATHY AND COULD EXPLAIN 

2411
02:16:12,306 --> 02:16:16,643
WHERE WE'RE SEEING PATIENTS WITH

2412
02:16:16,643 --> 02:16:18,712
HIGHER VOC AND FREQUENCY SCORES 

2413
02:16:18,712 --> 02:16:20,514
HAVE HIGHER DETECTION AS WELL.

2414
02:16:20,514 --> 02:16:23,484
THERE ARE SOME LIMITATIONS.

2415
02:16:23,484 --> 02:16:25,919
THE COVID-19 DIAGNOSIS WAS 

2416
02:16:25,919 --> 02:16:26,820
SELF-REPORTED.

2417
02:16:26,820 --> 02:16:32,759
AND THAT'S REALLY REFLECTING 

2418
02:16:32,759 --> 02:16:35,729
WHEN WAS HAPPENING BECAUSE TAY 

2419
02:16:35,729 --> 02:16:37,331
WERE DOING TEST KITS AND FELT 

2420
02:16:37,331 --> 02:16:39,600
THE DATA WAS IMPORTANT TO OMIT.

2421
02:16:39,600 --> 02:16:45,572
WE USED THE STEADY STATE BLOOD 

2422
02:16:45,572 --> 02:16:47,541
VALUES AS LEVEL 2 COVARIATES AND

2423
02:16:47,541 --> 02:16:49,843
SOMETHING WE CAN LOOK TO FUTURE 

2424
02:16:49,843 --> 02:16:52,546
STUDIES AND SHOULD MENTION OF 

2425
02:16:52,546 --> 02:16:53,914
COURSE INCLUSION CRITERIA 

2426
02:16:53,914 --> 02:16:57,050
SELECTED WOMEN WITH RELATIVELY 

2427
02:16:57,050 --> 02:16:58,919
NORMAL MENSTRUAL AND HORMONAL 

2428
02:16:58,919 --> 02:17:02,623
PHENOTYPES SO IT MAY NOT 

2429
02:17:02,623 --> 02:17:04,591
ENTIRELY REPRESENT THE WHOLE 

2430
02:17:04,591 --> 02:17:06,226
POPULATION OF WOMEN WITH SICKLE 

2431
02:17:06,226 --> 02:17:06,593
CELL DISEASE.

2432
02:17:06,593 --> 02:17:08,629
THANK YOU VERY MUCH I WANT TO 

2433
02:17:08,629 --> 02:17:17,170
ACKNOWLEDGE THE FOUNDATION AND 

2434
02:17:17,170 --> 02:17:25,946
THESE SUPERVISORS.

2435
02:17:25,946 --> 02:17:27,614
AND THERE WERE OTHER 

2436
02:17:27,614 --> 02:17:28,015
CO-INVESTIGATORS.

2437
02:17:28,015 --> 02:17:32,085
THANK YOU.

2438
02:17:32,085 --> 02:17:33,153
>> THANK YOU.

2439
02:17:33,153 --> 02:17:34,688
THERE'S ONLINE QUESTIONS FOR THE

2440
02:17:34,688 --> 02:17:37,291
SAKE OF TIME IF YOU CAN ADDRESS 

2441
02:17:37,291 --> 02:17:39,126
THEM THAT WOULD BE APPRECIATED.

2442
02:17:39,126 --> 02:17:42,729
I THINK WE NEED TO MOVE ON TO 

2443
02:17:42,729 --> 02:17:44,364
OUR NEXT TALK.

2444
02:17:44,364 --> 02:17:46,533
SO THE NEXT TALK IS 

2445
02:17:46,533 --> 02:17:48,669
IMPLEMENTATION OF INDIVIDUALIZED

2446
02:17:48,669 --> 02:17:51,104
PAIN PROTOCOLS THE ALIGN TRIAL 

2447
02:17:51,104 --> 02:18:01,615
WITH DR. TANABE AND DR. KING.

2448
02:18:03,250 --> 02:18:05,786
>> THANK YOU SO MUCH THANK
YOU 

2449
02:18:05,786 --> 02:18:09,156
TO THE NIH AND TO THE PLANNING 

2450
02:18:09,156 --> 02:18:09,890
COMMITTEE FOR THE OPPORTUNITY TO

2451
02:18:09,890 --> 02:18:13,193
PRESENT RESULTS FROM THE ALIGN 

2452
02:18:13,193 --> 02:18:15,896
TRIAL WHICH IS IMPLEMENTATION OF

2453
02:18:15,896 --> 02:18:17,931
INDIVIDUALIZED PAIN PLANS TO 

2454
02:18:17,931 --> 02:18:19,032
TREAT PAIN IN THE EMERGENCY 

2455
02:18:19,032 --> 02:18:19,399
DEPARTMENT.

2456
02:18:19,399 --> 02:18:25,138
THIS IS ON BEHALF OF MYSELF AND 

2457
02:18:25,138 --> 02:18:27,140
DR. KING AND SEVERAL 

2458
02:18:27,140 --> 02:18:28,208
INVESTIGATORS IN THE ROOM.

2459
02:18:28,208 --> 02:18:33,947
DR. HSU AND WANG AND OUR DATA 

2460
02:18:33,947 --> 02:18:38,952
MANAGEMENT ARE HERE AS WELL.

2461
02:18:38,952 --> 02:18:42,556
SO THE ALIGN TRIAL WAS ONE OF 

2462
02:18:42,556 --> 02:18:45,926
THREE IMPLEMENTATION SCIENCE 

2463
02:18:45,926 --> 02:18:49,062
TRIALS PART OF THE NHLBI FUNDED 

2464
02:18:49,062 --> 02:18:49,496
SICKLE CELL DISEASE 

2465
02:18:49,496 --> 02:18:51,798
IMPLEMENTATION CONSORTIUM.

2466
02:18:51,798 --> 02:19:02,442
THREE TRIALS WERE IMPLEMENTED 

2467
02:19:02,442 --> 02:19:03,443
PAIN TRIALS FOR PROVIDER ACCESS 

2468
02:19:03,443 --> 02:19:05,579
AND FOR THE FIRST TIME EVER FOR 

2469
02:19:05,579 --> 02:19:07,447
INDIVIDUAL PATIENTS OR WARRIORS 

2470
02:19:07,447 --> 02:19:08,849
TO HAVE THEIR PAIN TREATED IN 

2471
02:19:08,849 --> 02:19:18,191
THE EMERGENCY DEPARTMENT.

2472
02:19:18,191 --> 02:19:19,926
THERE WERE EIGHT THAT 

2473
02:19:19,926 --> 02:19:21,361
PARTICIPATED IN THE CONSORTIUM.

2474
02:19:21,361 --> 02:19:23,196
ALL EIGHT CENTERS PARTICIPATED 

2475
02:19:23,196 --> 02:19:33,540
IN THE ALIGN TRIAL.

2476
02:19:34,908 --> 02:19:37,944
AND THIS IS FRUSTRATING FOR 

2477
02:19:37,944 --> 02:19:39,413
INDIVIDUAL WARRIORS AND 

2478
02:19:39,413 --> 02:19:40,781
EMERGENCY DEPARTMENT PROVIDERS.

2479
02:19:40,781 --> 02:19:46,053
TODAY AFTER BEING AT THIS FOR 20

2480
02:19:46,053 --> 02:19:56,596
YEARS WE HAVE MADE PROGRESS AND 

2481
02:19:58,331 --> 02:19:59,199
THERE'S AN OPIOID EPIDEMIC AND 

2482
02:19:59,199 --> 02:20:03,603
NUMBERS OF OVERCROWDING AND 

2483
02:20:03,603 --> 02:20:06,006
EMERGENCY ROOM DEPARTMENT.

2484
02:20:06,006 --> 02:20:08,542
MY THEME WILL BE PARTNERSHIP AND

2485
02:20:08,542 --> 02:20:10,544
THE E.D. PARTNERS ARE IN THE 

2486
02:20:10,544 --> 02:20:11,978
PLACE OF WANTING TO DO THE RIGHT

2487
02:20:11,978 --> 02:20:13,447
THING AND NOW NEED HELP.

2488
02:20:13,447 --> 02:20:18,752
THE INDIVIDUALIZED PAIN PLANS AS

2489
02:20:18,752 --> 02:20:21,621
RECOMMENDED BY NATIONAL HEART, 

2490
02:20:21,621 --> 02:20:22,823
LUNG AND BLOOD AND ASH ARE 

2491
02:20:22,823 --> 02:20:23,724
IMPORTANT.

2492
02:20:23,724 --> 02:20:25,192
WE WANTED TO EVALUATE THE 

2493
02:20:25,192 --> 02:20:26,660
IMPLEMENTATION, CAN WE DO THIS 

2494
02:20:26,660 --> 02:20:37,204
FOR BOTH PATIENTS AND PROVIDERS.

2495
02:20:39,039 --> 02:20:41,475
OUR SECONDARY OUTCOMES WERE E.D.

2496
02:20:41,475 --> 02:20:42,576
PROVIDERS OF THEIR CONFIDENCE.

2497
02:20:42,576 --> 02:20:44,044
IT'S ONE THING TO HAVE THEM IN 

2498
02:20:44,044 --> 02:20:49,182
THE CHART OR IN THE PATIENT 

2499
02:20:49,182 --> 02:20:50,751
PORTAL BUT WILL PATIENTS 

2500
02:20:50,751 --> 02:20:53,220
ACKNOWLEDGE AND PROVIDERS USE 

2501
02:20:53,220 --> 02:20:59,359
THEM?

2502
02:20:59,359 --> 02:21:02,796
THEY HAD TO HAVE HAD AT LEAST 

2503
02:21:02,796 --> 02:21:03,630
ONE VISIT TO THE SICKLE CELL 

2504
02:21:03,630 --> 02:21:05,899
CENTER WITHIN THE LAST YEAR SO 

2505
02:21:05,899 --> 02:21:08,435
THE SICKLE PROVIDER CAN WRITE AN

2506
02:21:08,435 --> 02:21:09,903
INDIVIDUALIZED PAIN PLAN AND 

2507
02:21:09,903 --> 02:21:12,272
THEY ALSO HAD TO HAVE HAD A 

2508
02:21:12,272 --> 02:21:16,076
VISIT FOR VOE AT THE E.D. WITHIN

2509
02:21:16,076 --> 02:21:17,577
THE LAST 90 DAYS.

2510
02:21:17,577 --> 02:21:20,213
SO WE COULD GET A BASELINE 

2511
02:21:20,213 --> 02:21:22,282
SATISFACTION SCORE FROM THEM OF 

2512
02:21:22,282 --> 02:21:23,683
THEIR SATISFACTION WITH THAT 

2513
02:21:23,683 --> 02:21:25,252
VISIT IN THE LAST THREE MONTHS 

2514
02:21:25,252 --> 02:21:28,021
VERSUS THE VISIT THEY'RE GOING 

2515
02:21:28,021 --> 02:21:28,722
TO REMEMBER FOREVER IN THE LAST 

2516
02:21:28,722 --> 02:21:38,131
20 YEARS.

2517
02:21:38,131 --> 02:21:47,240
SO ALL THE E.D. PROVIDERS WOULD 

2518
02:21:47,240 --> 02:21:49,910
BE IN THE SURVEY AND TO BE IN 

2519
02:21:49,910 --> 02:21:51,545
THE FOLLOW-UP HAD TO BE HAVE A 

2520
02:21:51,545 --> 02:21:55,415
PATIENT WHO ENROLLED AND 

2521
02:21:55,415 --> 02:21:58,151
CONCEPTS AND HAD A FOLLOW-UP 

2522
02:21:58,151 --> 02:22:08,595
VISIT AND SURVEY AS WELL.

2523
02:22:14,134 --> 02:22:18,004
EIGHT SITES PARTICIPATED ALL 

2524
02:22:18,004 --> 02:22:21,208
ACADEMIC CENTERS AND SIX OF THE 

2525
02:22:21,208 --> 02:22:25,011
EIGHT SITES ALREADY HAD 

2526
02:22:25,011 --> 02:22:29,482
INDIVIDUALIZED PAIN PLANS 

2527
02:22:29,482 --> 02:22:37,357
AVAILABLE FOR THE PROVIDER.

2528
02:22:37,357 --> 02:22:38,558
AND WE HAD A LITTLE BIT ABOUT 

2529
02:22:38,558 --> 02:22:44,431
THE DEI AND TRIAL AND HOW TO 

2530
02:22:44,431 --> 02:22:45,465
TRIAGE PATIENTS AND 

2531
02:22:45,465 --> 02:22:47,534
INDIVIDUALIZED PAIN PROTOCOLS.

2532
02:22:47,534 --> 02:22:48,301
THE SICKLE CELL DISEASE 

2533
02:22:48,301 --> 02:22:49,836
PROVIDERS WROTE INDIVIDUALIZED 

2534
02:22:49,836 --> 02:22:52,038
A PLANS FOR FUTURE VISITS IN THE

2535
02:22:52,038 --> 02:22:56,409
E.D.

2536
02:22:56,409 --> 02:22:58,745
THOSE PLANS WERE THEN MADE 

2537
02:22:58,745 --> 02:23:00,814
AVAILABLE FOR THE SITES FOR THE 

2538
02:23:00,814 --> 02:23:06,253
E.D. PROVIDERS AND ALSO MADE 

2539
02:23:06,253 --> 02:23:13,093
AVAILABLE SO THE PATIENT AND HOW

2540
02:23:13,093 --> 02:23:14,895
TO USE PATIENT PORTAL AND 

2541
02:23:14,895 --> 02:23:15,962
RESEARCH STAFF HELPED THEM TO 

2542
02:23:15,962 --> 02:23:18,231
MAKE SURE THEY GOT ACCESS TO THE

2543
02:23:18,231 --> 02:23:18,598
PORTAL.

2544
02:23:18,598 --> 02:23:20,333
A MILLION REASONS WHY THEY NEED 

2545
02:23:20,333 --> 02:23:21,067
TO HAVE THAT.

2546
02:23:21,067 --> 02:23:23,169
THIS WAS A GOOD EXCUSE AND 

2547
02:23:23,169 --> 02:23:24,905
MOTIVATION FOR INDIVIDUAL 

2548
02:23:24,905 --> 02:23:26,973
PATIENTS TO ACTUALLY GET ACCESS 

2549
02:23:26,973 --> 02:23:29,943
AND USE THE PORTAL.

2550
02:23:29,943 --> 02:23:33,246
WE ALSO GAVE THE PATIENT A 

2551
02:23:33,246 --> 02:23:33,947
WALLET CARD.

2552
02:23:33,947 --> 02:23:35,782
IT DID NOT HAVE THEIR DOSE ON 

2553
02:23:35,782 --> 02:23:35,949
IT.

2554
02:23:35,949 --> 02:23:40,987
IT GAVE THEM THE INSTRUCTIONS 

2555
02:23:40,987 --> 02:23:44,024
HOW TO ACCESS THE PLAN FROM THE 

2556
02:23:44,024 --> 02:23:47,527
E.H.R. FROM THEIR PHONE.

2557
02:23:47,527 --> 02:23:49,362
IF ANYBODY WALKS INTO AN E.R. 

2558
02:23:49,362 --> 02:23:52,165
WITH A LETTER THAT SAYS 

2559
02:23:52,165 --> 02:24:02,575
DR. SMITH SAYS I GET 2 

2560
02:24:29,035 --> 02:24:37,210
MILLIGRAMS OF DILATIN IT'D GET 

2561
02:24:37,210 --> 02:24:41,281
THROWN AWAY AND THE QUESTIONS 

2562
02:24:41,281 --> 02:24:51,491
WERE TEXTED.

2563
02:25:11,111 --> 02:25:15,315
AND IMPORTANTLY THESE WERE SIX 

2564
02:25:15,315 --> 02:25:20,086
ACADEMIC MEDICAL SITES PRO 

2565
02:25:20,086 --> 02:25:21,621
SICKLE CELL AND THEY HAD BEEN 

2566
02:25:21,621 --> 02:25:23,523
WORKING WITH E.D.s AND HAD 

2567
02:25:23,523 --> 02:25:25,091
INDIVIDUAL PLANS IN THE RECORD 

2568
02:25:25,091 --> 02:25:25,992
FOR THE EMERGENCY PROVIDER.

2569
02:25:25,992 --> 02:25:28,128
SIX OF THE EIGHT.

2570
02:25:28,128 --> 02:25:28,728
THE OTHER TWO DID IT FOR THE 

2571
02:25:28,728 --> 02:25:38,838
TRIAL.

2572
02:25:45,979 --> 02:25:48,181
WE HAD 153 PATIENTS WHO 

2573
02:25:48,181 --> 02:25:49,883
COMPLETED A BASELINE AND 

2574
02:25:49,883 --> 02:25:51,818
FOLLOW-UP SURVEY ON THE PATIENT 

2575
02:25:51,818 --> 02:25:52,018
SIDE.

2576
02:25:52,018 --> 02:25:54,888
ON THE PROVIDER SIDE MORE 

2577
02:25:54,888 --> 02:25:56,723
PROVIDERS BUT 135 WHO COMPLETED 

2578
02:25:56,723 --> 02:26:01,227
A BASELINE AND FOLLOW-UP AND 

2579
02:26:01,227 --> 02:26:06,299
TREATED A PATIENT WHO HAD AN 

2580
02:26:06,299 --> 02:26:09,235
INDIVIDUALIZED PAIN PLAN.

2581
02:26:09,235 --> 02:26:12,472
THEY COMPLETED THE TEXT SURVEY 

2582
02:26:12,472 --> 02:26:18,545
AND USING THE SCALE 1-5 WE ASKED

2583
02:26:18,545 --> 02:26:21,514
THEM HOW EASY WAS IT FOR YOU TO 

2584
02:26:21,514 --> 02:26:21,848
FIND IT.

2585
02:26:21,848 --> 02:26:26,052
IT'S AN IMPLEMENTATION TRIAL.

2586
02:26:26,052 --> 02:26:28,521
WE KNOW HOW WE SHOULD BE 

2587
02:26:28,521 --> 02:26:30,156
TREATING VASO OCCLUSIVE EPISODES

2588
02:26:30,156 --> 02:26:32,392
AND THERE'S EVIDENCE BUT CAN WE 

2589
02:26:32,392 --> 02:26:34,561
IMPLEMENT THE EVIDENCE.

2590
02:26:34,561 --> 02:26:35,261
IT'S VERY MUCH IMPLEMENTATION.

2591
02:26:35,261 --> 02:26:42,569
WE WANTED TO KNOW AND E.D. 

2592
02:26:42,569 --> 02:26:43,837
PROVIDERS DMRECOMPLETED THE SUR 

2593
02:26:43,837 --> 02:26:54,214
WITH A 1 TO 7 SCORE.

2594
02:26:54,214 --> 02:26:56,316
ALL THE PATIENTS WERE PRETTY 

2595
02:26:56,316 --> 02:26:57,050
SATISFIED AT BASELINE WITH THE 

2596
02:26:57,050 --> 02:26:57,684
QUALITY OF THEIR CARE.

2597
02:26:57,684 --> 02:27:00,220
IF YOU THINK ABOUT IT, SIX OF 

2598
02:27:00,220 --> 02:27:01,955
THE EIGHT CENTERS ALREADY HAVE 

2599
02:27:01,955 --> 02:27:02,655
INDIVIDUAL PLANS THE E.D. WAS 

2600
02:27:02,655 --> 02:27:09,896
USING.

2601
02:27:09,896 --> 02:27:12,132
THERE WAS NO IMPROVEMENT IN 

2602
02:27:12,132 --> 02:27:12,899
SATISFACTION FROM THE BASELINE 

2603
02:27:12,899 --> 02:27:14,667
BECAUSE WE WERE HIGH TO START 

2604
02:27:14,667 --> 02:27:18,605
WITH AND NOT SURPRISING E.D. 

2605
02:27:18,605 --> 02:27:21,274
PROVIDERS WERE CONFIDENT GIVING 

2606
02:27:21,274 --> 02:27:23,643
THE RIGHT CARE ARE TWO DIFFERENT

2607
02:27:23,643 --> 02:27:26,813
THINGS AND NO CHANGE.

2608
02:27:26,813 --> 02:27:27,780
60% WERE PRETTY CONFIDENT AND 

2609
02:27:27,780 --> 02:27:28,815
STAYED THAT WAY.

2610
02:27:28,815 --> 02:27:31,584
WE HAD OTHER QUESTIONS WE ASKED 

2611
02:27:31,584 --> 02:27:35,788
THAT WERE REALLY IMPORTANT.

2612
02:27:35,788 --> 02:27:38,158
97.6% OF THE E.D. PROVIDERS 

2613
02:27:38,158 --> 02:27:39,659
ORDERED WHAT WAS RECOMMENDED.

2614
02:27:39,659 --> 02:27:41,861
YOU PUT THE PROTOCOL OUT THERE.

2615
02:27:41,861 --> 02:27:45,932
THEY FEEL CONFIDENT AND WILL 

2616
02:27:45,932 --> 02:27:53,339
ORDER IT.

2617
02:27:53,339 --> 02:27:55,775
WHILE WE DIDN'T MEASURE MORPHINE

2618
02:27:55,775 --> 02:27:57,177
EQUIVALENTS IN THIS TRIAL AND 

2619
02:27:57,177 --> 02:28:03,850
THERE'LL BE MORE DATA IN A FEW 

2620
02:28:03,850 --> 02:28:10,023
MINUTES THEY FOLLOW WITHIN .1 

2621
02:28:10,023 --> 02:28:10,823
MILLIGRAM.

2622
02:28:10,823 --> 02:28:12,992
AND WE'RE WORKING TOGETHER AND 

2623
02:28:12,992 --> 02:28:14,661
COLLABORATING AND MAKING THEIR 

2624
02:28:14,661 --> 02:28:16,729
JOB EASIER BECAUSE THEY DO WANT 

2625
02:28:16,729 --> 02:28:21,935
TO DO THE RIGHT THING IN A VERY 

2626
02:28:21,935 --> 02:28:23,403
DIFFICULT ENVIRONMENT WITH AN 

2627
02:28:23,403 --> 02:28:25,939
OPIOID EPIDEMIC AND CRAZY 

2628
02:28:25,939 --> 02:28:31,144
OVERCROWDING.

2629
02:28:31,144 --> 02:28:32,145
WHAT YOU SEE FROM THE FIRST 

2630
02:28:32,145 --> 02:28:33,780
GRAPHIC ON THE LEFT IS HOW EASY 

2631
02:28:33,780 --> 02:28:39,886
WAS IT TO FIND IT BECAUSE AGAIN 

2632
02:28:39,886 --> 02:28:41,921
IMPLEMENTATION CAN THEY FIND IT.

2633
02:28:41,921 --> 02:28:43,856
PRETTY EASY IF YOU LOOK AT THE 

2634
02:28:43,856 --> 02:28:47,293
6s AND 7s IT'S ABOUT 60% OF THE 

2635
02:28:47,293 --> 02:28:52,599
TIME PEOPLE FOUND IT WAS EASY TO

2636
02:28:52,599 --> 02:28:59,038
FIND WE HAD 318 POST SURVEYS WE 

2637
02:28:59,038 --> 02:29:00,173
SURVEYED THEM MORE THAN ONE 

2638
02:29:00,173 --> 02:29:00,440
TIME.

2639
02:29:00,440 --> 02:29:05,712
THE PRIMARY ANALYSIS WAS JUST UP

2640
02:29:05,712 --> 02:29:06,779
WITH VISIT.

2641
02:29:06,779 --> 02:29:09,315
WE GOT 318 SURVEYS BACK FROM 

2642
02:29:09,315 --> 02:29:09,582
PATIENTS.

2643
02:29:09,582 --> 02:29:11,751
OVER ALL IT WAS EASY TO FIND.

2644
02:29:11,751 --> 02:29:12,852
IMPORTANT TO FIND IT'S NOT EASY 

2645
02:29:12,852 --> 02:29:14,153
TO FIND FOR EVERYBODY.

2646
02:29:14,153 --> 02:29:16,656
EACH INDIVIDUAL WE NEED TO MAKE 

2647
02:29:16,656 --> 02:29:18,224
SURE THEY CAN FIND IT.

2648
02:29:18,224 --> 02:29:20,460
THEN THE SECOND SIDE IS HOW 

2649
02:29:20,460 --> 02:29:21,461
HELPFUL WAS IT.

2650
02:29:21,461 --> 02:29:23,396
HOW HELPFUL WAS THE PLAN IN THE 

2651
02:29:23,396 --> 02:29:24,998
PAIN TREATMENT YOU NEEDED AND 

2652
02:29:24,998 --> 02:29:26,199
AGAIN PRETTY HELPFUL.

2653
02:29:26,199 --> 02:29:32,505
SIX AND SEVEN OVER 50%.

2654
02:29:32,505 --> 02:29:42,982
THE PAIN PLANS WERE HELPFUL.

2655
02:29:51,124 --> 02:29:53,760
PATIENTS LIKED IT AND WE HAD AN 

2656
02:29:53,760 --> 02:29:56,396
ANECDOTE AND I THINK FROM YOUR 

2657
02:29:56,396 --> 02:29:58,865
SIDE IN CHICAGO WE HEARD ON THE 

2658
02:29:58,865 --> 02:30:05,405
CALLED ONE PATIENT FROM THE UIC 

2659
02:30:05,405 --> 02:30:11,311
SITE AND SHOWED IT TO A RANDOM 

2660
02:30:11,311 --> 02:30:14,247
E.D. DOC IN TEXAS AND THEY 

2661
02:30:14,247 --> 02:30:16,916
FOLLOWED IT AND WE WERE JUMPING 

2662
02:30:16,916 --> 02:30:19,419
UP AND DOWN AND THAT'S WHAT WE 

2663
02:30:19,419 --> 02:30:19,619
WANT.

2664
02:30:19,619 --> 02:30:21,587
ONE MORE COMMENT WITH PART OF 

2665
02:30:21,587 --> 02:30:27,360
THE CDC REGISTRY DOING AN 

2666
02:30:27,360 --> 02:30:29,028
ANALYSIS OF SUPER UTILIZATION 

2667
02:30:29,028 --> 02:30:30,563
AND IDENTIFIED PATIENTS IN NORTH

2668
02:30:30,563 --> 02:30:33,700
CAROLINA OVER SEVEN YEARS THAT 

2669
02:30:33,700 --> 02:30:44,243
CAME FROM 25 DIFFERENT STATES IT

2670
02:30:45,945 --> 02:30:49,148
SPEAKS TO THE NEED FOR 

2671
02:30:49,148 --> 02:30:49,515
INDIVIDUALIZED 

2672
02:30:49,515 --> 02:30:51,451
A PLAN AND 60% SAID THEY HAD A 

2673
02:30:51,451 --> 02:30:51,651
PLAN.

2674
02:30:51,651 --> 02:30:56,089
I THINK THE REASON 30% DIDN'T 

2675
02:30:56,089 --> 02:30:58,458
WAS THEY KNEW THE E.D. DOC WAS 

2676
02:30:58,458 --> 02:30:58,991
FOLLOWING THE PLAN IN THE 

2677
02:30:58,991 --> 02:31:02,328
RECORD.

2678
02:31:02,328 --> 02:31:06,332
IN CONCLUSION ALL THE SITES WERE

2679
02:31:06,332 --> 02:31:09,936
ABLE TO SUCCESSFULLY IMPLEMENT 

2680
02:31:09,936 --> 02:31:13,039
THE PLANS AND PUT THEM IN THE 

2681
02:31:13,039 --> 02:31:14,574
MEDICAL RECORD FOR THE PATIENT 

2682
02:31:14,574 --> 02:31:19,512
WHICH IS WHERE THEY NEED TO BE.

2683
02:31:19,512 --> 02:31:21,214
E.D. PROVIDERS ENDORSE THEM AND 

2684
02:31:21,214 --> 02:31:22,215
THEY'LL BE FEASIBLE AND FOLLOWED

2685
02:31:22,215 --> 02:31:26,919
AND IT REDUCES A LOT OF BARRIERS

2686
02:31:26,919 --> 02:31:28,654
TO RECOMMENDED TREATMENT 

2687
02:31:28,654 --> 02:31:29,422
IMPLEMENTING THE INDIVIDUAL 

2688
02:31:29,422 --> 02:31:33,526
PLANS.

2689
02:31:33,526 --> 02:31:43,736
AS AN ASIDE, WE DID DEVELOP A 

2690
02:31:43,736 --> 02:31:46,539
FORMAL PROCESS TO HELP THE 

2691
02:31:46,539 --> 02:31:48,107
SICKLE CELL PROVIDERS WRITE A 

2692
02:31:48,107 --> 02:31:49,909
PLAN AND THAT IS POSTED.

2693
02:31:49,909 --> 02:31:54,547
THE CALCULATOR WHERE WE WORK 

2694
02:31:54,547 --> 02:31:56,883
WITH DR. STRAUSS TO A FORMAL 

2695
02:31:56,883 --> 02:31:59,685
PROCESS TO DEVELOP AND HOUSED AT

2696
02:31:59,685 --> 02:32:01,421
THE NATIONAL ALLIANCE OF SICKLE 

2697
02:32:01,421 --> 02:32:05,391
CELL CENTER'S WEBSITE.

2698
02:32:05,391 --> 02:32:10,096
WE'RE HAPPY IT'S UP THERE 

2699
02:32:10,096 --> 02:32:11,397
AVAILABLE FOR FREE AND 

2700
02:32:11,397 --> 02:32:21,574
QUESTIONS.

2701
02:32:32,885 --> 02:32:33,953
>> TERRIFIC WORK.

2702
02:32:33,953 --> 02:32:35,188
THIS WARMS MY HEART.

2703
02:32:35,188 --> 02:32:36,556
WHAT ARE YOUR RECOMMENDATIONS 

2704
02:32:36,556 --> 02:32:39,258
FOR SITES NOT PART OF THIS?

2705
02:32:39,258 --> 02:32:41,327
I KNOW AT EMORY CHILDREN'S 

2706
02:32:41,327 --> 02:32:42,662
HEALTH CARE OF ATLANTA THEY HAVE

2707
02:32:42,662 --> 02:32:44,096
INDIVIDUAL PAIN PLANS.

2708
02:32:44,096 --> 02:32:45,898
AS A DOC I CAN'T FIND THEM.

2709
02:32:45,898 --> 02:32:47,200
I LOOK AND THEN GIVE UP AND TRY 

2710
02:32:47,200 --> 02:32:49,936
TO DO THE RIGHT THING FOR THE 

2711
02:32:49,936 --> 02:32:53,239
PATIENT.

2712
02:32:53,239 --> 02:32:56,509
>> WHERE DO YOU FIND THE
PLAN IS

2713
02:32:56,509 --> 02:32:57,376
THE QUESTION.

2714
02:32:57,376 --> 02:32:58,644
I RECOMMEND THE 

2715
02:32:58,644 --> 02:33:01,013
MULTIDISCIPLINARY TEAM WHERE YOU

2716
02:33:01,013 --> 02:33:05,017
HAVE AN E.R. DOC AND SICKLE CELL

2717
02:33:05,017 --> 02:33:08,855
DOC AND SOMEONE TO WORK WITH THE

2718
02:33:08,855 --> 02:33:13,226
ELECTRONIC HEALTH RECORD AND 

2719
02:33:13,226 --> 02:33:14,594
TRYING TO FIND A PLACE TO FIND 

2720
02:33:14,594 --> 02:33:16,362
IT AND TALKING ABOUT THE LAST 

2721
02:33:16,362 --> 02:33:18,731
OUT PATIENT VISIT BECAUSE MANY 

2722
02:33:18,731 --> 02:33:20,433
TIMES THAT RECORD IS SO MANY 

2723
02:33:20,433 --> 02:33:30,643
VISITS YOU CAN'T FIND IT.

2724
02:33:30,643 --> 02:33:32,778
WE HAVE A SNAPSHOT VIEW AND THE 

2725
02:33:32,778 --> 02:33:33,546
PLAN IS THERE.

2726
02:33:33,546 --> 02:33:35,448
IF IT CHANGES THEY NEED TO 

2727
02:33:35,448 --> 02:33:36,516
CHANGE IT THERE.

2728
02:33:36,516 --> 02:33:37,116
IT'S ONE PLACE.

2729
02:33:37,116 --> 02:33:41,454
OTHER PLACES DO IT AS AN FYI TAB

2730
02:33:41,454 --> 02:33:43,022
IN THE E.H.R.

2731
02:33:43,022 --> 02:33:44,924
I THINK YOUR PARTICULAR CENTER 

2732
02:33:44,924 --> 02:33:46,425
YOU HAVE TO GET TOGETHER AND 

2733
02:33:46,425 --> 02:33:48,761
TELL THEM WE CAN'T FIND IT.

2734
02:33:48,761 --> 02:33:50,863
IT'S GREAT YOU'RE WRITING THIS 

2735
02:33:50,863 --> 02:33:53,332
BUT WE CAN'T FIND IT SO PUT IT 

2736
02:33:53,332 --> 02:33:54,300
SOMEWHERE WHERE YOU CAN FIND IT 

2737
02:33:54,300 --> 02:33:56,435
AND WORK TOGETHER TO GET IT 

2738
02:33:56,435 --> 02:33:56,669
THERE.

2739
02:33:56,669 --> 02:33:58,738
THEN THERE'S THE KEEPING IT UP 

2740
02:33:58,738 --> 02:33:59,539
TO DATE.

2741
02:33:59,539 --> 02:34:00,606
OFTEN THAT IS ALSO UP TO THEM AS

2742
02:34:00,606 --> 02:34:10,716
WELL.

2743
02:34:15,555 --> 02:34:19,058
HAVING A BPA AND GO TO ORDER THE

2744
02:34:19,058 --> 02:34:23,429
MEDS AND THE BPA POPS UP AND 

2745
02:34:23,429 --> 02:34:26,799
SAYS GIVES THE PERSON THIS.

2746
02:34:26,799 --> 02:34:27,466
A LOT OF PEOPLE DON'T GET A LOT 

2747
02:34:27,466 --> 02:34:30,970
OF OPIOIDS AND THOSE PEOPLE CAN 

2748
02:34:30,970 --> 02:34:33,372
BENEFIT FROM WEIGHT BASED.

2749
02:34:33,372 --> 02:34:38,144
THAT WOULD BE MY RECOMMENDATION 

2750
02:34:38,144 --> 02:34:45,751
THE PARTNERSHIP.

2751
02:34:45,751 --> 02:34:47,954
>> IF YOU USE EPIC THERE'S
A 

2752
02:34:47,954 --> 02:34:48,788
PLACE OF EMERGENCY CARE PLANS 

2753
02:34:48,788 --> 02:34:50,690
BUILT INTO THE GENERIC VERSION.

2754
02:34:50,690 --> 02:34:54,894
I KNOW YOU MAY NOT HAVE IT BUT 

2755
02:34:54,894 --> 02:34:57,930
THEY USE THIS FOR PEOPLE THAT 

2756
02:34:57,930 --> 02:34:58,731
FREQUENTLY USE THE EMERGENCY 

2757
02:34:58,731 --> 02:34:59,765
ROOM DEPARTMENT.

2758
02:34:59,765 --> 02:35:02,868
WE ORIGINALLY PUT OUR IPPs IN 

2759
02:35:02,868 --> 02:35:09,909
CARE COORDINATION UNDER SNAPSHOT

2760
02:35:09,909 --> 02:35:11,444
AND THE EMERGENCY ROOM PEOPLE 

2761
02:35:11,444 --> 02:35:13,112
SAID NO WE WANT THEM IN THIS 

2762
02:35:13,112 --> 02:35:15,014
PLACE AND GOES IN THEIR GENERAL 

2763
02:35:15,014 --> 02:35:17,083
WORK FLOW BUT IT DEPENDS ON THE 

2764
02:35:17,083 --> 02:35:18,150
E.R.

2765
02:35:18,150 --> 02:35:20,119
I ASSUME THE OTHER VENDORS HAVE 

2766
02:35:20,119 --> 02:35:21,420
A SPECIFIC PLACE FOR THINGS LIKE

2767
02:35:21,420 --> 02:35:21,854
THAT AS WELL.

2768
02:35:21,854 --> 02:35:24,290
>> THANK YOU, DR. WANG.

2769
02:35:24,290 --> 02:35:29,028
AND GET IT FOR THE PATIENT FOR 

2770
02:35:29,028 --> 02:35:31,263
THE PATIENT PORTAL.

2771
02:35:31,263 --> 02:35:32,531
>> DANIEL IVY.

2772
02:35:32,531 --> 02:35:37,136
I WANTED TO ASK ABOUT YOUR NEXT 

2773
02:35:37,136 --> 02:35:37,336
STEPS.

2774
02:35:37,336 --> 02:35:40,640
IT'S WONDERFUL THE WORK AT THE 

2775
02:35:40,640 --> 02:35:42,942
SICKLE CELL CENTERS BUT HAVE YOU

2776
02:35:42,942 --> 02:35:45,911
THOUGHT ABOUT WHAT YOU'LL DO 

2777
02:35:45,911 --> 02:35:47,980
NEXT AND USING THE NORTH 

2778
02:35:47,980 --> 02:35:50,216
CAROLINA APEX OR OTHER EXISTING 

2779
02:35:50,216 --> 02:35:51,017
PROGRAMS WITH THE STATE 

2780
02:35:51,017 --> 02:35:53,152
GOVERNMENT TO PUSH THIS OUT TO 

2781
02:35:53,152 --> 02:35:56,422
OTHER E.D.s IN RURAL AREAS.

2782
02:35:56,422 --> 02:35:58,524
>> THANK YOU FOR THE
QUESTION.

2783
02:35:58,524 --> 02:35:59,425
IT'S FUNNY YOU MENTION NORTH 

2784
02:35:59,425 --> 02:35:59,692
CAROLINA.

2785
02:35:59,692 --> 02:36:01,260
WE'VE BEEN WORKING FOR FOUR 

2786
02:36:01,260 --> 02:36:03,162
YEARS NOW TO DEVELOP THE TOOLBOX

2787
02:36:03,162 --> 02:36:04,230
AND DISSEMINATE.

2788
02:36:04,230 --> 02:36:05,865
WITH PARTNERS ACROSS THE STATE 

2789
02:36:05,865 --> 02:36:08,267
FROM EMERGENCY MEDICINE AND FROM

2790
02:36:08,267 --> 02:36:09,869
SICKLE CELL ACROSS THE STATE TO 

2791
02:36:09,869 --> 02:36:13,039
DISSEMINATE THE TOOLBOX THROUGH 

2792
02:36:13,039 --> 02:36:15,007
THE CEOs OF THE TOP 20 HOSPITALS

2793
02:36:15,007 --> 02:36:17,743
THAT HAVE THE HIGHEST NUMBER OF 

2794
02:36:17,743 --> 02:36:21,080
E.D. VISITS TO CEO AND NURSING 

2795
02:36:21,080 --> 02:36:23,015
AND MEDICAL DIRECTORS AND 

2796
02:36:23,015 --> 02:36:23,949
WORKING WITH THOSE ASSOCIATIONS.

2797
02:36:23,949 --> 02:36:26,318
YOU'RE RIGHT, IT'S TIME FOR A 

2798
02:36:26,318 --> 02:36:33,025
BIGGER DISSEMINATION AND I THINK

2799
02:36:33,025 --> 02:36:34,994
THERE'S A PENDING MEASURE ABOUT 

2800
02:36:34,994 --> 02:36:36,996
TIME TO FIRST DRUG.

2801
02:36:36,996 --> 02:36:40,733
SO BETWEEN ASH AND CMS AND 

2802
02:36:40,733 --> 02:36:41,467
LARGER ORGANIZATIONS IT'S TIME.

2803
02:36:41,467 --> 02:36:43,502
WE'VE SHOWN WE CAN DO IT SO WE 

2804
02:36:43,502 --> 02:36:54,046
DO HAVE TO DISSEMINATE IT NOW.

2805
02:36:54,046 --> 02:36:56,482
THERE'S A CHAIR AND I THINK I'LL

2806
02:36:56,482 --> 02:36:59,318
BE THE CHAIR ELECT AFTER THAT.

2807
02:36:59,318 --> 02:37:02,855
THERE'S A GREAT TOOL ON THE ASAP

2808
02:37:02,855 --> 02:37:06,058
WEBSITE AND THE TOOL IS THE 

2809
02:37:06,058 --> 02:37:08,294
NUMBER DECISION SUPPORT TOOL 

2810
02:37:08,294 --> 02:37:13,332
THAT HAS EVER BEEN OUT FROM ASEP

2811
02:37:13,332 --> 02:37:15,434
WHICH IS A HUGE THING TO BE ABLE

2812
02:37:15,434 --> 02:37:17,470
TO SAY.

2813
02:37:17,470 --> 02:37:21,340
THE FACT ASAP AND MY ENA 

2814
02:37:21,340 --> 02:37:23,476
ORGANIZATION I THINK WE'VE MADE 

2815
02:37:23,476 --> 02:37:26,378
A WHOLE LOT OF PROGRESS DESPITE 

2816
02:37:26,378 --> 02:37:29,648
THE BARRIERS WE STILL HAVE AND 

2817
02:37:29,648 --> 02:37:30,483
HAVE PROFESSIONAL ASSOCIATIONS 

2818
02:37:30,483 --> 02:37:32,985
BEHIND THEM AND CAN NO LONGER 

2819
02:37:32,985 --> 02:37:35,755
SAY E.D.s DON'T WANT TO DO IT 

2820
02:37:35,755 --> 02:37:36,655
BUT SAY HOW DO WE HELP THEM DO 

2821
02:37:36,655 --> 02:37:46,732
IT.

2822
02:37:59,578 --> 02:38:02,615
>> WHAT IS THE PLATFORM?

2823
02:38:02,615 --> 02:38:07,586
>> EPIC AND SERNER.

2824
02:38:07,586 --> 02:38:12,725
EPIC IS EPIC FOR YOU AND ME AND 

2825
02:38:12,725 --> 02:38:15,161
EACH IS A LITTLE DIFFERENT AND 

2826
02:38:15,161 --> 02:38:18,130
ALISON KING HAS MORE DETAILED 

2827
02:38:18,130 --> 02:38:19,932
GOOD EXAMPLES OF HOW YOU CAN DO 

2828
02:38:19,932 --> 02:38:23,502
IT IF YOU'RE ON EPIC TO MAKE IT 

2829
02:38:23,502 --> 02:38:30,743
SUPER, SUPER EASY.

2830
02:38:30,743 --> 02:38:33,646
>> HOW CAN WE GET ACCESS
TO THE 

2831
02:38:33,646 --> 02:38:36,515
PORTAL AND START TO ADDRESS THE 

2832
02:38:36,515 --> 02:38:37,449
IMPROVEMENT 

2833
02:38:37,449 --> 02:38:40,186
>> I'M HAPPY TO CONNECT
WITH 

2834
02:38:40,186 --> 02:38:42,822
ANYONE OR CONNECT IN THE 

2835
02:38:42,822 --> 02:38:53,332
HOSPITAL FROM MARLIN IMABAGO.

2836
02:39:01,407 --> 02:39:03,976
>> YOU CAN GET THE
CALCULATOR.

2837
02:39:03,976 --> 02:39:05,411
THE TOOLBOX IN NORTH CAROLINA 

2838
02:39:05,411 --> 02:39:08,113
WE'RE GETTING A LOT OF REQUESTS 

2839
02:39:08,113 --> 02:39:13,519
FOR THAT ALREADY AND START THE 

2840
02:39:13,519 --> 02:39:15,387
DISSEMINATION ON SEPTEMBER 1.

2841
02:39:15,387 --> 02:39:19,825
I DON'T HAVE PERMISSION TO SHARE

2842
02:39:19,825 --> 02:39:21,327
THAT YET BUT IF YOU E-MAIL ME I 

2843
02:39:21,327 --> 02:39:23,996
CAN SHARE ALL KINDS OF STUFF.

2844
02:39:23,996 --> 02:39:25,130
>> ONE MORE.

2845
02:39:25,130 --> 02:39:25,731
GREAT PRESENTATION.

2846
02:39:25,731 --> 02:39:26,899
WHAT ARE YOUR THOUGHTS ON HOW WE

2847
02:39:26,899 --> 02:39:30,169
CAN MAKE IPPs STANDARD OF CARE 

2848
02:39:30,169 --> 02:39:31,937
AND THERE BE REDUCING THE BIASES

2849
02:39:31,937 --> 02:39:41,513
AND ACCESS ISSUES PATIENTS OF AN

2850
02:39:41,513 --> 02:39:44,250
EXPERIENCE.

2851
02:39:44,250 --> 02:39:45,851
WE HAVE TO GET PATIENTS MORE 

2852
02:39:45,851 --> 02:39:47,353
ENGAGED TO REQUEST THE PLANS 

2853
02:39:47,353 --> 02:39:48,921
BECAUSE THE SICKLE CELL PROVIDER

2854
02:39:48,921 --> 02:39:50,022
HAS TO WRITE THE PLAN.

2855
02:39:50,022 --> 02:39:53,392
AND THEN THEY HAVE TO ENGAGE 

2856
02:39:53,392 --> 02:39:54,426
THEIR E.D.

2857
02:39:54,426 --> 02:39:57,363
I THINK THAT WOULD BE 

2858
02:39:57,363 --> 02:39:58,564
PROFESSIONAL ASSOCIATIONS, 

2859
02:39:58,564 --> 02:39:59,999
PATIENTS DRIVING IT.

2860
02:39:59,999 --> 02:40:03,802
I THINK ALL OF US DRIVING IT 

2861
02:40:03,802 --> 02:40:04,737
TOGETHER AND MAYBE THE CMS 

2862
02:40:04,737 --> 02:40:05,604
MEASURE WILL HELP WITH 

2863
02:40:05,604 --> 02:40:13,946
MOTIVATION.

2864
02:40:13,946 --> 02:40:17,516
>> ONE MORE.

2865
02:40:17,516 --> 02:40:25,925
>>  A COMMENT FROM JULIE
KANTER.

2866
02:40:25,925 --> 02:40:28,694
THERE'S A QR CODE TO LINK TO THE

2867
02:40:28,694 --> 02:40:29,528
PATIENT'S PLAN IN THE SICKLE 

2868
02:40:29,528 --> 02:40:39,905
CELL DISEASE REGISTRY.

2869
02:40:44,143 --> 02:40:46,745
>> THANK YOU FOR THE
UPDATE.

2870
02:40:46,745 --> 02:40:49,915
LET'S GO TO THE NEXT TALK 

2871
02:40:49,915 --> 02:40:55,287
METABOLIC REPROGRAMMING OF 

2872
02:40:55,287 --> 02:40:56,755
MACROPHAGES BY SICKLE CELL 

2873
02:40:56,755 --> 02:41:00,426
HEMOGLOBIN BY MARINA JEREBTSOVA.

2874
02:41:00,426 --> 02:41:01,060
FROM HOWARD UNIVERSITY COLLEGE 

2875
02:41:01,060 --> 02:41:03,462
OF MEDICINE.

2876
02:41:03,462 --> 02:41:04,229
>> GOOD MORNING.

2877
02:41:04,229 --> 02:41:07,099
THANK YOU FOR GIVING ME THE 

2878
02:41:07,099 --> 02:41:11,904
OPPORTUNITY TO PRESENT OUR DATA 

2879
02:41:11,904 --> 02:41:22,181
AT THIS MEETING.

2880
02:41:29,588 --> 02:41:33,926
AND THE LOW OXYGEN PRESENTS 

2881
02:41:33,926 --> 02:41:39,965
HEMOLYSIS AND FREE PLASMA 

2882
02:41:39,965 --> 02:41:41,500
HEMOGLOBIN AND THERE'S 

2883
02:41:41,500 --> 02:41:45,270
APPROXIMATEL

2884
02:41:45,270 --> 02:41:51,610
APPROXIMATELY HEMOGLOBIN IN 

2885
02:41:51,610 --> 02:41:54,646
CIRCULATION AND THE MACROPHAGE 

2886
02:41:54,646 --> 02:41:57,449
HAPPEN IN THE SPLEEN.

2887
02:41:57,449 --> 02:41:59,518
IF INDUCED ANTIINFLAMMATORY 

2888
02:41:59,518 --> 02:42:06,658
PHENOTYPE OF PLAQUE ROW FAITH.

2889
02:42:06,658 --> 02:42:14,733
-- MACROPHAGE AND THERE'S 

2890
02:42:14,733 --> 02:42:18,771
LYSOSOMES AND AUTOPHAGOSOMES 

2891
02:42:18,771 --> 02:42:22,841
WITH PRO-INFLAMMATORY PHENOTYPE 

2892
02:42:22,841 --> 02:42:32,818
AND THAN POLYMERIZE AT LOW PH 

2893
02:42:32,818 --> 02:42:36,989
AND THIS ANY DELAY ITS 

2894
02:42:36,989 --> 02:42:43,695
DEGRADATION IN LIYSOSOMES AND G 

2895
02:42:43,695 --> 02:42:45,898
TO THE PROINFLAMMATORY 

2896
02:42:45,898 --> 02:42:47,032
PHENOTYPE.

2897
02:42:47,032 --> 02:42:49,068
DIFFERENTIATION OF MACROPHAGE TO

2898
02:42:49,068 --> 02:42:50,169
THE SPECIFIC PHENOTYPE IS 

2899
02:42:50,169 --> 02:42:53,539
USUALLY ASSOCIATED WITH THE 

2900
02:42:53,539 --> 02:43:03,916
METABOLIC PROGRAMMING.

2901
02:43:12,858 --> 02:43:16,995
AND THIS REPRESENTS THE 

2902
02:43:16,995 --> 02:43:19,331
POLYMERIZATION OF HEMOGLOBIN IN 

2903
02:43:19,331 --> 02:43:23,335
THE RED BLOOD CELLS AND 

2904
02:43:23,335 --> 02:43:23,936
CAPILLARY SICKLE CELL DISEASE 

2905
02:43:23,936 --> 02:43:34,046
MOUSE.

2906
02:43:35,414 --> 02:43:44,523
AND WE LOOK AT THE THP-1 CELL 

2907
02:43:44,523 --> 02:43:49,928
LINE DIFFERENTIATED INTO THE 

2908
02:43:49,928 --> 02:43:57,069
MACROPHAGE AND WE USE NORMAL 

2909
02:43:57,069 --> 02:44:03,275
HEMOGLOBIN A AS A CONTROL FOR 

2910
02:44:03,275 --> 02:44:05,544
THE MODIFICATION OF THE 

2911
02:44:05,544 --> 02:44:08,180
MACROPHAGE PHENOTYPE.

2912
02:44:08,180 --> 02:44:09,581
WE ALSO USE SICKLE CELL DISEASE 

2913
02:44:09,581 --> 02:44:19,791
MOUSE MODEL.

2914
02:44:32,738 --> 02:44:38,944
 THREES TWO APPROACHES.

2915
02:44:38,944 --> 02:44:49,454
AND WE LOOK AT THE MIGHT CON -- 

2916
02:44:49,454 --> 02:44:54,726
MITOCHONDRIAL PROBE AND IT 

2917
02:44:54,726 --> 02:44:57,930
REPRESENTS THE PROBE.

2918
02:44:57,930 --> 02:45:03,168
THE BLUE COLOR REPRESENTS THE 

2919
02:45:03,168 --> 02:45:11,610
STAINING OF NUCLEUS.

2920
02:45:11,610 --> 02:45:14,246
AND HERE IS A WHITE OUTLINE OF 

2921
02:45:14,246 --> 02:45:20,152
THE STAINING QUANTIFICATION OF 

2922
02:45:20,152 --> 02:45:21,954
THE PAIR CELLS.

2923
02:45:21,954 --> 02:45:24,256
AND BOTH DEMONSTRATE SIGNIFICANT

2924
02:45:24,256 --> 02:45:28,760
INCREASE OF THEIR MITOCHONDRIA 

2925
02:45:28,760 --> 02:45:34,800
IN MACROPHAGE HEMOGLOBIN 

2926
02:45:34,800 --> 02:45:37,936
COMPARED TO THE MACROPHAGE 

2927
02:45:37,936 --> 02:45:45,644
TREATED WITH HEMOGLOBIN.

2928
02:45:45,644 --> 02:45:47,079
AND THREES AN INCREASE IN THE 

2929
02:45:47,079 --> 02:45:53,085
NUMBER OF MITOCHONDRIA IN THE 

2930
02:45:53,085 --> 02:45:57,923
MACROPHAGE IN SICKLE CELL 

2931
02:45:57,923 --> 02:46:05,564
HEMOGLOBIN NOT ONLY THE NUMBER 

2932
02:46:05,564 --> 02:46:09,935
QUANTIFIED IN THE MICROSCOPE BUT

2933
02:46:09,935 --> 02:46:15,040
THE SIZE OF MITOCHONDRIA AND 

2934
02:46:15,040 --> 02:46:21,913
INCREASE IN THE MACROPHAGE STAGE

2935
02:46:21,913 --> 02:46:32,357
OF SICKLE CELL HEMOGLOBIN.

2936
02:46:34,926 --> 02:46:41,099
AND YOU CAN ANALYZE THE RNA SEQ 

2937
02:46:41,099 --> 02:46:44,870
DATA AND THERE WAS A PATHWAY IN 

2938
02:46:44,870 --> 02:46:50,776
THE ENRICHMENT ANALYSIS.

2939
02:46:50,776 --> 02:46:57,516
AND WE CAN COMPARE SAMPLES.

2940
02:46:57,516 --> 02:46:59,785
WE COMPARE MACROPHAGE FOR SICKLE

2941
02:46:59,785 --> 02:47:02,521
CELLS AND TREATED WITH NORMAL 

2942
02:47:02,521 --> 02:47:12,731
HEMOGLOBIN.

2943
02:47:21,973 --> 02:47:23,542
AND THE NUMBER OF EXPRESSION IN 

2944
02:47:23,542 --> 02:47:25,944
THE MACROPHAGE TREATED WITH 

2945
02:47:25,944 --> 02:47:32,751
SICKLE CELL HEMOGLOBIN.

2946
02:47:32,751 --> 02:47:37,656
THERE'S GENERIC CUSTOM CELLS 

2947
02:47:37,656 --> 02:47:44,463
ANALYSIS FOR 242 GENES.

2948
02:47:44,463 --> 02:47:47,366
WE ALSO PERFORMED ANALYSIS OF 

2949
02:47:47,366 --> 02:47:49,801
THE GENES FOR GLYCOLYSIS AND 

2950
02:47:49,801 --> 02:47:53,538
MITOCHONDRIAL INFUSION.

2951
02:47:53,538 --> 02:48:03,048
THE INCREASED NUMBER WITH IN 

2952
02:48:03,048 --> 02:48:03,949
CONTRAST INCREASE THE SIZE OF 

2953
02:48:03,949 --> 02:48:06,885
MITOCHONDRIA CAN BE ASSOCIATED 

2954
02:48:06,885 --> 02:48:09,488
WITH THE MITOCHONDRIAL FUSION 

2955
02:48:09,488 --> 02:48:12,958
BUT WE DID NOT FIND SIGNIFICANT 

2956
02:48:12,958 --> 02:48:17,396
DIFFERENCE IN THE THOSE TREATED 

2957
02:48:17,396 --> 02:48:22,501
WITH THE SICKLE CELL HEMOGLOBIN.

2958
02:48:22,501 --> 02:48:27,472
SO THE INCREASE OF MITOCHONDRIAL

2959
02:48:27,472 --> 02:48:29,908
MAY AFFECT THE FUNCTION OF 

2960
02:48:29,908 --> 02:48:30,509
MITOCHONDRIA.

2961
02:48:30,509 --> 02:48:35,747
WE FIRST TESTED THE PRODUCTION 

2962
02:48:35,747 --> 02:48:43,688
OF MITOCHONDRIA.

2963
02:48:43,688 --> 02:48:45,390
WE DID NOT FIND A DIFFERENCE 

2964
02:48:45,390 --> 02:48:49,928
BETWEEN THE PRODUCTION OF 

2965
02:48:49,928 --> 02:48:53,598
MITOCHONDRIAL BETWEEN THE 

2966
02:48:53,598 --> 02:48:59,404
CONTROL MACROPHAGE TREATED WITH 

2967
02:48:59,404 --> 02:49:02,040
HEMOGLOBIN S AND IT SLIGHTLY 

2968
02:49:02,040 --> 02:49:07,979
DECREASED PRODUCTION OF 

2969
02:49:07,979 --> 02:49:10,348
MITOCHONDRIAL ROS AND WE 

2970
02:49:10,348 --> 02:49:11,883
DEMONSTRATED THE PRODUCTION OF 

2971
02:49:11,883 --> 02:49:22,427
MITOCHONDRIAL ROS IN OUR SYSTEM.

2972
02:49:25,997 --> 02:49:33,271
THERE'S ALSO THE PRODUCTION OF 

2973
02:49:33,271 --> 02:49:38,643
THP AND HEMOGLOBIN S REDUCED 

2974
02:49:38,643 --> 02:49:47,619
SIGNIFICANTLY MORE ATP AND THE 

2975
02:49:47,619 --> 02:49:52,257
AMOUNT OF HTP1 DERIVED 

2976
02:49:52,257 --> 02:49:53,525
MACROPHAGE AND THERE'S NO 

2977
02:49:53,525 --> 02:49:57,963
LIMITATION FOR THE OXYGEN IN 

2978
02:49:57,963 --> 02:50:08,406
THIS PROCESS IN THE CELLS.

2979
02:50:10,775 --> 02:50:16,915
AND THERE'S MOSTLY MACROPHAGES 

2980
02:50:16,915 --> 02:50:24,322
IN THE DIGESTION OF THE RED 

2981
02:50:24,322 --> 02:50:29,928
BLOOD CELLS MICE AND ATP 

2982
02:50:29,928 --> 02:50:30,929
PRODUCTION AND SICKLE CELL 

2983
02:50:30,929 --> 02:50:34,099
DISEASE MICE SIGNIFICANTLY 

2984
02:50:34,099 --> 02:50:34,432
INCREASED.

2985
02:50:34,432 --> 02:50:38,236
WHAT WAS INTERESTING IS WE FOUND

2986
02:50:38,236 --> 02:50:44,976
SIGNIFICANT INCREASE IN THE 

2987
02:50:44,976 --> 02:50:45,310
SPLENNOCYTES.

2988
02:50:45,310 --> 02:50:50,382
IN CONCLUSION, TREATMENT OF 

2989
02:50:50,382 --> 02:50:52,684
HUMAN MACROPHAGE INCREASED THE 

2990
02:50:52,684 --> 02:50:58,156
NUMBER AND VOLUME OF 

2991
02:50:58,156 --> 02:51:00,458
MITOCHONDRIA AND THE SIZE OF 

2992
02:51:00,458 --> 02:51:05,664
PHOSPHORYLATION AND ATP 

2993
02:51:05,664 --> 02:51:07,933
PRODUCTION AND UP REGULATION OF 

2994
02:51:07,933 --> 02:51:13,672
M ROS PRODUCTION AND INCREASED 

2995
02:51:13,672 --> 02:51:15,607
MITOCHONDRIAL SIZE AND ATP 

2996
02:51:15,607 --> 02:51:18,476
PRODUCTION AND MACROPHAGE 

2997
02:51:18,476 --> 02:51:21,913
TREATED WITH HEMOGLOBIN MAY 

2998
02:51:21,913 --> 02:51:26,751
REFLECT DIFFERENTIATION INTO THE

2999
02:51:26,751 --> 02:51:29,521
LONG-TERM PRO INFLAMMATORY 

3000
02:51:29,521 --> 02:51:33,592
PHENOTYPE CALLED TRAINED 

3001
02:51:33,592 --> 02:51:39,698
IMMUNITY OR INMATE IMMUNE SYSTEM

3002
02:51:39,698 --> 02:51:40,332
MEMORY.

3003
02:51:40,332 --> 02:51:45,437
THIS CAN EXIST IN THE MACROPHAGE

3004
02:51:45,437 --> 02:51:48,940
TWO TO SIX MONTHS AND BECAUSE 

3005
02:51:48,940 --> 02:51:55,013
IT'S ASSOCIATED WITH THE E

3006
02:51:55,013 --> 02:51:59,985
EPIGENETIC CHANGE IN MACROPHAGE 

3007
02:51:59,985 --> 02:52:00,518
TREATED WITH SICKLE CELL 

3008
02:52:00,518 --> 02:52:00,819
HEMOGLOBIN.

3009
02:52:00,819 --> 02:52:10,996
THANK YOU.

3010
02:52:16,034 --> 02:52:16,668
>> QUESTIONS?

3011
02:52:16,668 --> 02:52:18,570
NO IN PERSON OR ONLINE 

3012
02:52:18,570 --> 02:52:19,537
QUESTIONS?

3013
02:52:19,537 --> 02:52:20,238
THANK YOU VERY MUCH FOR YOUR 

3014
02:52:20,238 --> 02:52:20,505
TALK.

3015
02:52:20,505 --> 02:52:24,542
SO LET'S MOVE ON TO THE NEXT 

3016
02:52:24,542 --> 02:52:35,086
TALK FROM DR. STEPHANIE IBEMERE 

3017
02:52:38,990 --> 02:52:44,663
AND PAIN PROTOCOL FOR EMERGENCY 

3018
02:52:44,663 --> 02:52:45,897
ROOM DEVELOPMENT OF VASO 

3019
02:52:45,897 --> 02:52:50,468
OCCLUSIVE EPISODES.

3020
02:52:50,468 --> 02:53:00,912
>> I'M AN ASSIST THE DUKE 

3021
02:53:02,113 --> 02:53:05,316
UNIVERSITY SCHOOL OF NURSING AND

3022
02:53:05,316 --> 02:53:07,152
WITH GREAT POWER COMES GREAT 

3023
02:53:07,152 --> 02:53:08,520
RESPONSIBILITY AND I'M STANDING 

3024
02:53:08,520 --> 02:53:10,655
BETWEEN YOU AND YOUR LUNCH SO I 

3025
02:53:10,655 --> 02:53:12,757
PROMISE NOT TO GO OVER TIME AND 

3026
02:53:12,757 --> 02:53:13,458
APPRECIATE BEING HERE.

3027
02:53:13,458 --> 02:53:16,361
TODAY I'LL BE PRESENTING SOME 

3028
02:53:16,361 --> 02:53:18,830
DATA FROM A MANUSCRIPT CURRENTLY

3029
02:53:18,830 --> 02:53:22,467
UNDER REVIEW ENTITLED IMPACT OF 

3030
02:53:22,467 --> 02:53:25,937
INDIVIDUALIZED VERSUS 

3031
02:53:25,937 --> 02:53:29,641
WEIGHT-BASED PAIN PROTOCOL ON 

3032
02:53:29,641 --> 02:53:31,209
PATIENT SATISFACTION FOR 

3033
02:53:31,209 --> 02:53:32,010
PATIENTS WITH SICKLE CELL 

3034
02:53:32,010 --> 02:53:32,944
DISEASE EXPERIENCING VASO 

3035
02:53:32,944 --> 02:53:34,412
OCCLUSIVE EPISODES.

3036
02:53:34,412 --> 02:53:37,949
AS YOU SAW A COUPLE SECONDS AGO 

3037
02:53:37,949 --> 02:53:43,788
I DO NOT HAVE DISCLOSURES  

3038
02:53:43,788 --> 02:53:45,757
PERTINENT TO THIS PRESENTATION.

3039
02:53:45,757 --> 02:53:49,661
I'LL BE PRESENTING SECONDARY 

3040
02:53:49,661 --> 02:53:51,930
ANALYSIS THAT COMES FROM THE 

3041
02:53:51,930 --> 02:53:55,333
COMPARE VOE TRIAL FUNDED WE THE 

3042
02:53:55,333 --> 02:53:55,967
NATIONAL HEART, LUNG AND BLOOD 

3043
02:53:55,967 --> 02:53:56,234
INSTITUTE.

3044
02:53:56,234 --> 02:53:57,969
I WANT TO THANK THEM FOR 

3045
02:53:57,969 --> 02:54:07,345
SUPPORTING OUR RESEARCH.

3046
02:54:07,345 --> 02:54:08,646
INDIVIDUALS WHO LIVE WITH SICKLE

3047
02:54:08,646 --> 02:54:12,717
CELL DISEASE OFTEN EXPERIENCE 

3048
02:54:12,717 --> 02:54:13,384
UNPREDICTABLE AND FREQUENT VASO 

3049
02:54:13,384 --> 02:54:16,020
OCCLUSIVE EPISODES.

3050
02:54:16,020 --> 02:54:20,258
THEY CARRY WITH THEM WHAT CAN BE

3051
02:54:20,258 --> 02:54:21,659
AN EXTREME AND SOMETIMES 

3052
02:54:21,659 --> 02:54:23,628
INDESCRIBABLE PAIN THAT OFTEN 

3053
02:54:23,628 --> 02:54:25,597
NECESSITATES EMERGENCY ROOM 

3054
02:54:25,597 --> 02:54:28,433
DEPARTMENT CARE AND INTRAVENOUS 

3055
02:54:28,433 --> 02:54:31,870
OPIOID ADMINISTRATION.

3056
02:54:31,870 --> 02:54:35,974
UNFORTUNATELY THE WORK OF 

3057
02:54:35,974 --> 02:54:38,777
DR. HAYWOOD AND DR. BALLGIN AND 

3058
02:54:38,777 --> 02:54:41,179
OTHERS HIGHLIGHTED THAT DESPITE 

3059
02:54:41,179 --> 02:54:43,481
THE REALITY, THE REALNESS, THE 

3060
02:54:43,481 --> 02:54:45,917
RAWNESS OF THE PAIN INDIVIDUALS 

3061
02:54:45,917 --> 02:54:47,852
FEEL DURING THESE VASO OCCLUSIVE

3062
02:54:47,852 --> 02:54:50,121
EPISODES, THEY OFTEN ENCOUNTER 

3063
02:54:50,121 --> 02:54:53,324
STIGMA AND ARACIAL BIAS IN THE 

3064
02:54:53,324 --> 02:54:54,225
EMERGENCY ROOM DEPARTMENT WHEN 

3065
02:54:54,225 --> 02:54:55,660
SEEKING CARE.

3066
02:54:55,660 --> 02:54:58,963
AFTER YEARS AND YEARS OF THOSE 

3067
02:54:58,963 --> 02:55:00,365
EXPERIENCES AND COLLECTING 

3068
02:55:00,365 --> 02:55:04,903
ANYTHING TICH S IN EMERGENCY 

3069
02:55:04,903 --> 02:55:05,937
ROOM DEPARTMENT MANY SICKLE CELL

3070
02:55:05,937 --> 02:55:10,375
WARRIORS DECIDE TO DELAY THEIR 

3071
02:55:10,375 --> 02:55:12,911
CARE AND THESE DELAYS ARE WHAT 

3072
02:55:12,911 --> 02:55:15,046
WITH CONSIDER CONTRIBUTION TO 

3073
02:55:15,046 --> 02:55:17,649
THE INCREASED MORBIDITY AND 

3074
02:55:17,649 --> 02:55:19,017
MORTALITY RELATED TO SICKLE CELL

3075
02:55:19,017 --> 02:55:19,250
DISEASE.

3076
02:55:19,250 --> 02:55:22,387
SO, IN THE CONTEXT OF THIS 

3077
02:55:22,387 --> 02:55:23,454
MILIEU THE NATIONAL HEART, LUNG 

3078
02:55:23,454 --> 02:55:24,489
AND BLOOD INSTITUTE IN 2014 AND 

3079
02:55:24,489 --> 02:55:26,257
THE AMERICAN SOCIETY FOR 

3080
02:55:26,257 --> 02:55:29,561
HEMATOLOGY IN 2020 DEVELOPED 

3081
02:55:29,561 --> 02:55:33,565
GUIDELINES OR RECOMMENDATIONS 

3082
02:55:33,565 --> 02:55:35,633
FOR HOW WE COULD TREAT VASO 

3083
02:55:35,633 --> 02:55:37,502
OCCLUSIVE EPISODES AND MADE THE 

3084
02:55:37,502 --> 02:55:39,504
RECOMMENDATION WE SHOULD BE 

3085
02:55:39,504 --> 02:55:41,873
TREATING THESE ACUTE EPISODES 

3086
02:55:41,873 --> 02:55:43,208
USING A PATIENT SPECIFIC 

3087
02:55:43,208 --> 02:55:45,910
PROTOCOL OR WHAT THEY LABELLED A

3088
02:55:45,910 --> 02:55:54,452
STANDARD PAIN PROTOCOL.

3089
02:55:54,452 --> 02:55:58,623
IN THIS PARTICULAR PARENT STUDY 

3090
02:55:58,623 --> 02:56:02,594
WE WERE TALKING ABOUT THE 

3091
02:56:02,594 --> 02:56:04,362
COMPARISON OF A PATIENT-SPECIFIC

3092
02:56:04,362 --> 02:56:06,931
PAIN PROTOCOL AND THE 

3093
02:56:06,931 --> 02:56:08,800
WEIGHT-BASED PAIN PROTOCOL IN 

3094
02:56:08,800 --> 02:56:12,537
THE REDUCTION OF A PAIN SCORE 

3095
02:56:12,537 --> 02:56:15,740
MEASURED BY A 0 TO 100 VISUAL 

3096
02:56:15,740 --> 02:56:17,909
SCALE ANALOG SCALE DEVICE.

3097
02:56:17,909 --> 02:56:22,080
IN THIS STUDY WE OPERATIONALIZED

3098
02:56:22,080 --> 02:56:25,783
THE STANDARD OPIOID PROTOCOL AS 

3099
02:56:25,783 --> 02:56:27,886
A WEIGHT-BASED PAIN PROTOCOL.

3100
02:56:27,886 --> 02:56:30,054
IN MY STUDY I'M TALKING ABOUT 

3101
02:56:30,054 --> 02:56:33,324
THE COMPARISON OF THE PATIENT 

3102
02:56:33,324 --> 02:56:38,429
SATISFACTION PROTOCOL TO THE 

3103
02:56:38,429 --> 02:56:40,365
WEIGHT-BASED PAIN PROTOCOL IN 

3104
02:56:40,365 --> 02:56:40,965
THE MEASUREMENT OF PATIENT 

3105
02:56:40,965 --> 02:56:51,409
SATISFACTION IN THE STUDY.

3106
02:56:53,244 --> 02:56:55,313
SO, TO BE INCLUDED THERE WERE 

3107
02:56:55,313 --> 02:56:55,747
SIX SITES.

3108
02:56:55,747 --> 02:56:58,616
THE STUDY SITES HAD TO MEDE 

3109
02:56:58,616 --> 02:56:59,250
CERTAIN CRITERIA.

3110
02:56:59,250 --> 02:57:01,886
THERE HAD TO BE A HEMATOLOGIST, 

3111
02:57:01,886 --> 02:57:05,423
READY, WILLING AND ABLE TO 

3112
02:57:05,423 --> 02:57:06,891
DEVELOP THE PAIN PROTOCOLS FOR 

3113
02:57:06,891 --> 02:57:08,493
EACH PATIENT RANDOMIZED.

3114
02:57:08,493 --> 02:57:10,495
YOU CAN'T DO MUCH WITH A 

3115
02:57:10,495 --> 02:57:13,031
DOCUMENT THAT CAN'T GET 

3116
02:57:13,031 --> 02:57:13,932
INTEGRATED IN THE ELECTRONIC 

3117
02:57:13,932 --> 02:57:16,000
HEALTH RECORD.

3118
02:57:16,000 --> 02:57:17,335
SO YOU HAVE I.T. SPECIALISTS 

3119
02:57:17,335 --> 02:57:20,071
READY, WILLING AND WAITING TO 

3120
02:57:20,071 --> 02:57:22,206
SUPPORT THE PROTOCOLS IN THE 

3121
02:57:22,206 --> 02:57:22,974
ELECTRONIC HEALTH RECORD.

3122
02:57:22,974 --> 02:57:25,009
CAPACITY TO HANDLE A RESEARCH 

3123
02:57:25,009 --> 02:57:26,411
STUDY OF THIS SIZE WAS 

3124
02:57:26,411 --> 02:57:27,879
IMPERATIVE FOR US AND WANTED TO 

3125
02:57:27,879 --> 02:57:37,221
KNOW THE SITES HAD AT LEAST TWO 

3126
02:57:37,221 --> 02:57:38,856
SICKLE CELL DISEASE RELATED 

3127
02:57:38,856 --> 02:57:40,258
EVENTS AT THEIR SITES.

3128
02:57:40,258 --> 02:57:42,694
IT'S IMPORTANT TO NOTE IN THE 

3129
02:57:42,694 --> 02:57:44,562
SITES THERE WERE NO PREVIOUS 

3130
02:57:44,562 --> 02:57:47,498
USES OF A PAIN PROTOCOL SPECIFIC

3131
02:57:47,498 --> 02:57:50,802
FOR VASO OCCLUSIVE EPISODES IN 

3132
02:57:50,802 --> 02:57:52,370
THE EMERGENCY ROOM DEPARTMENT.

3133
02:57:52,370 --> 02:57:54,205
ALL STUDY PARTICIPANTS WHO 

3134
02:57:54,205 --> 02:57:58,276
PARTICIPATED OVER 18 HAVE ONE OF

3135
02:57:58,276 --> 02:58:01,913
THESE FOUR GENOTYPES AND HAD AN 

3136
02:58:01,913 --> 02:58:02,914
EMERGENCY ROOM DEPARTMENT VISIT 

3137
02:58:02,914 --> 02:58:08,753
AFTER BEING RANDOMIZED AND 

3138
02:58:08,753 --> 02:58:09,921
COMPLETED THEIR EMERGENCY ROOM 

3139
02:58:09,921 --> 02:58:14,959
DEPARTMENT AFTER THEIR E.D. 

3140
02:58:14,959 --> 02:58:15,360
VISIT.

3141
02:58:15,360 --> 02:58:17,929
ALL THE PARTICIPANTS RECRUIT AND

3142
02:58:17,929 --> 02:58:19,230
ENROLLED WERE BLIND TO THEIR 

3143
02:58:19,230 --> 02:58:21,065
STUDY ARM IN THE STUDY.

3144
02:58:21,065 --> 02:58:25,703
IN TERMS OF THE METHODS THAT 

3145
02:58:25,703 --> 02:58:27,405
WERE USED FOR COMPARE OF THE 

3146
02:58:27,405 --> 02:58:29,540
STUDY PRIOR TO BEING RANDOMIZED 

3147
02:58:29,540 --> 02:58:31,876
WE CONDUCTED PRE-ENROLLMENT.

3148
02:58:31,876 --> 02:58:34,178
YOU MAY SCRATCH YOUR HEAD AS TO 

3149
02:58:34,178 --> 02:58:35,813
WHAT THAT MEANS.

3150
02:58:35,813 --> 02:58:39,350
PRE-ENROLLMENT IS RELATED TO US 

3151
02:58:39,350 --> 02:58:41,686
CONSENTING TO PARTICIPANTS 

3152
02:58:41,686 --> 02:58:47,091
BEFORE THEY HAD THEIR E.D. VISIT

3153
02:58:47,091 --> 02:58:50,094
BECAUSE WE DIDN'T FEEL IT WAS 

3154
02:58:50,094 --> 02:58:51,429
WISE TO HAVE THEM IN THE VASO 

3155
02:58:51,429 --> 02:58:52,730
OCCLUSIVE EPISODES IN THE 

3156
02:58:52,730 --> 02:58:53,564
EMERGENCY ROOM DEPARTMENT.

3157
02:58:53,564 --> 02:58:57,969
ONCE PRE-ENROLLED A PARTICIPANT 

3158
02:58:57,969 --> 02:59:08,012
WOULD BE RANDOMIZED AND THERE 

3159
02:59:08,012 --> 02:59:09,947
WAS AN OPIOID CALCULATOR TO 

3160
02:59:09,947 --> 02:59:12,784
DEVELOP THE PAIN PROTOCOLS.

3161
02:59:12,784 --> 02:59:15,553
THAT WAS USED IN CONJUNCTION 

3162
02:59:15,553 --> 02:59:16,254
WITH MEDICAL HISTORY INFORMATION

3163
02:59:16,254 --> 02:59:18,456
WHICH INCLUDED THE TYPES AND 

3164
02:59:18,456 --> 02:59:23,194
DOSES OF OPIOID THAT WERE USED 

3165
02:59:23,194 --> 02:59:25,930
ON THAT PARTICIPANT'S MOST 

3166
02:59:25,930 --> 02:59:27,098
SEVERE PAIN DAY AND PREVIOUS USE

3167
02:59:27,098 --> 02:59:28,566
OF OPIOIDS THAT COULD BE 

3168
02:59:28,566 --> 02:59:31,869
COLLECTED FROM CHART REVIEW.

3169
02:59:31,869 --> 02:59:34,806
SHOULD THE HEMATOLOGIST HAD HAD 

3170
02:59:34,806 --> 02:59:37,208
ANY ISSUE IN DEVELOPING THE PAIN

3171
02:59:37,208 --> 02:59:40,178
PLANS THEY HAD ACCESS TO THREE 

3172
02:59:40,178 --> 02:59:41,012
HEMATOLOGY EXPERTS TO SUPPORT 

3173
02:59:41,012 --> 02:59:43,614
THEM IN THE DEVELOPMENT OF THE 

3174
02:59:43,614 --> 02:59:46,250
PAIN PROTOCOLS.

3175
02:59:46,250 --> 02:59:48,753
ALL YOU NEED TO GO IS TO THE 

3176
02:59:48,753 --> 02:59:51,556
NATIONAL ALLIANCE OF THE OPIOID 

3177
02:59:51,556 --> 02:59:53,724
WEBSITE TO GET THE CALCULATOR.

3178
02:59:53,724 --> 02:59:57,328
AND A LOT OF HARD WORK WENT INTO

3179
02:59:57,328 --> 02:59:57,862
BUILDING THAT CALCULATOR.

3180
02:59:57,862 --> 03:00:01,666
AS PART OF THE STUDY I AM 

3181
03:00:01,666 --> 03:00:03,835
PRESENTING TODAY PARTICIPANT 

3182
03:00:03,835 --> 03:00:04,836
SATISFACTION WITH PAIN 

3183
03:00:04,836 --> 03:00:07,472
MANAGEMENT WAS COLLECTED AS PART

3184
03:00:07,472 --> 03:00:09,941
OF THE LAST DATA COLLECTION 

3185
03:00:09,941 --> 03:00:12,009
POINT IN THE SIX HOUR STUDY 

3186
03:00:12,009 --> 03:00:14,712
VISIT OR HOSPITAL DISPOSITION.

3187
03:00:14,712 --> 03:00:16,781
WHATEVER THE FINAL DATA POINT 

3188
03:00:16,781 --> 03:00:18,983
WAS AND ANALYSIS OF SATISFACTION

3189
03:00:18,983 --> 03:00:21,352
BETWEEN THE PROTOCOLS WAS 

3190
03:00:21,352 --> 03:00:27,058
CONDUCTED USING A TWO-SAMPLE T 

3191
03:00:27,058 --> 03:00:33,498
TEST AND HEISBERG TEST.

3192
03:00:33,498 --> 03:00:35,566
THE MEAN AGE OF OUR PARTICIPANTS

3193
03:00:35,566 --> 03:00:37,168
WAS 30 YEARS.

3194
03:00:37,168 --> 03:00:39,270
THE MOST HIGHLY REPRESENTED 

3195
03:00:39,270 --> 03:00:44,942
GENOTYPES WERE SS AND SICKLE 

3196
03:00:44,942 --> 03:00:46,310
BETA THALASSEMIA.

3197
03:00:46,310 --> 03:00:48,112
MOST WERE FEMALE AND AFRICAN 

3198
03:00:48,112 --> 03:00:50,448
AMERICAN AND THE BASELINE PAIN 

3199
03:00:50,448 --> 03:00:53,618
SCORE WAS APPROXIMATELY 80.

3200
03:00:53,618 --> 03:00:55,353
I WANT TO HIGHLIGHT IN THE TRIAL

3201
03:00:55,353 --> 03:00:58,389
THE PRIMARY OUTCOME SHOWED A 34%

3202
03:00:58,389 --> 03:01:00,191
REDUCTION IN PAIN.

3203
03:01:00,191 --> 03:01:00,925
THOUGH THE DIFFERENCE BETWEEN 

3204
03:01:00,925 --> 03:01:03,427
THE TWO PROTOCOLS WAS NOT 

3205
03:01:03,427 --> 03:01:03,728
SIGNIFICANT.

3206
03:01:03,728 --> 03:01:08,799
THERE WAS A 26.5 POINT REDUCTION

3207
03:01:08,799 --> 03:01:11,669
IN PAIN SCORE IN THE COMPARABLE 

3208
03:01:11,669 --> 03:01:13,905
VOE TRIAL WHICH WAS CLINICALLY 

3209
03:01:13,905 --> 03:01:18,709
SIGNIFICANT.

3210
03:01:18,709 --> 03:01:20,745
SO IS PATIENT SATISFACTION.

3211
03:01:20,745 --> 03:01:25,650
SO FOR OVER ALL THE 40% OF THE 

3212
03:01:25,650 --> 03:01:27,251
PARTICIPANTS FELT THEIR PAIN WAS

3213
03:01:27,251 --> 03:01:28,352
RELIEVED ENOUGH TO BE DISCHARGED

3214
03:01:28,352 --> 03:01:31,155
HOME AT THE END OF THE STUDY.

3215
03:01:31,155 --> 03:01:33,925
YOU CAN ALSO SEE THOUGH IT 

3216
03:01:33,925 --> 03:01:35,526
WASN'T STATISTICALLY SIGNIFICANT

3217
03:01:35,526 --> 03:01:37,929
A LARGE PORTION OF INDIVIDUALS 

3218
03:01:37,929 --> 03:01:40,698
RANDOMIZED TO THE SPECIFIC 

3219
03:01:40,698 --> 03:01:43,734
PROTOCOL BELIEVED THE E.D. STAFF

3220
03:01:43,734 --> 03:01:45,670
HAD DONE EVERYTHING TO CONTROL 

3221
03:01:45,670 --> 03:01:48,039
THEIR PAIN AND THE WEIGHT-BASED 

3222
03:01:48,039 --> 03:01:49,240
PROTOCOL SHOWED THE SAME NUMBER 

3223
03:01:49,240 --> 03:01:50,641
OF PARTICIPANTS SUGGESTING THEIR

3224
03:01:50,641 --> 03:01:56,247
PAIN WAS WELL CONTROLLED BY THE 

3225
03:01:56,247 --> 03:01:58,382
E.D. STAFF AND THE PROTOCOL WHO 

3226
03:01:58,382 --> 03:02:01,586
STATED THEY WERE SATISFIED WITH 

3227
03:02:01,586 --> 03:02:02,920
THE PAIN MANAGEMENT COMPARED TO 

3228
03:02:02,920 --> 03:02:05,656
THE PAST IN THIS PARTICULAR 

3229
03:02:05,656 --> 03:02:05,856
STUDY.

3230
03:02:05,856 --> 03:02:08,025
SO IF YOU LOOK AT THE VERY LAST 

3231
03:02:08,025 --> 03:02:10,995
PART OF THE BOX IN THE RED 

3232
03:02:10,995 --> 03:02:12,330
YOU'LL SEE THE PATIENT SPECIFIC 

3233
03:02:12,330 --> 03:02:16,000
GROUP WAS AT 57% OF THE GROUP 

3234
03:02:16,000 --> 03:02:18,769
SAYING THEY WERE VERY SATISFIED 

3235
03:02:18,769 --> 03:02:19,770
COMPARED TO THE WEIGHT-BASED 

3236
03:02:19,770 --> 03:02:23,741
GROUP ONLY 31%.

3237
03:02:23,741 --> 03:02:27,345
INTERESTINGLY NEARLY 80% OF THE 

3238
03:02:27,345 --> 03:02:29,647
OVER ALL SAMPLE STATED THEY WERE

3239
03:02:29,647 --> 03:02:31,682
SOMEWHAT OR VERY SATISFIED WITH 

3240
03:02:31,682 --> 03:02:33,951
THE PAIN MEDICINE THEY RECEIVED 

3241
03:02:33,951 --> 03:02:34,885
DURING THE TRIAL AS WELL.

3242
03:02:34,885 --> 03:02:36,454
THERE WAS ALSO NO DIFFERENCE 

3243
03:02:36,454 --> 03:02:38,589
BETWEEN THE GROUPS IN TERMS OF 

3244
03:02:38,589 --> 03:02:41,726
REACHING THEIR ORIGINAL PAIN 

3245
03:02:41,726 --> 03:02:51,569
GOAL THIS SHOWS THE DECISION.

3246
03:02:51,569 --> 03:02:54,171
34 PARTICIPANTS DISCHARGED HOME,

3247
03:02:54,171 --> 03:02:57,408
91% FELT THEY WERE READY TO BE 

3248
03:02:57,408 --> 03:02:59,744
DISCHARGED AND THEIR PAIN HAD 

3249
03:02:59,744 --> 03:03:01,912
BEEN RELEASED SUFFICIENTLY TO BE

3250
03:03:01,912 --> 03:03:04,482
RELEASED HOME AND 90% WHO DID 

3251
03:03:04,482 --> 03:03:05,316
NOT HAVE THEIR PAIN RELEASED 

3252
03:03:05,316 --> 03:03:09,920
WERE ADMITTED TO THE HOSPITAL.

3253
03:03:09,920 --> 03:03:11,722
OF THE FIVE UP TREATMENT OR IN 

3254
03:03:11,722 --> 03:03:13,791
THE STUDY VISIT FOR SIX HOURS 

3255
03:03:13,791 --> 03:03:17,962
BUT NOT RECEIVED A DISPOSITION 

3256
03:03:17,962 --> 03:03:23,768
DECISION 80% DID NOT BELIEVE 

3257
03:03:23,768 --> 03:03:26,637
THEIR PAIN WAS SUFFICIENTLY 

3258
03:03:26,637 --> 03:03:29,807
RELIEVED TO BE DISCHARGED HOME.

3259
03:03:29,807 --> 03:03:32,710
YOU MAY ASK YOURSELF THE STORY 

3260
03:03:32,710 --> 03:03:35,780
AND THE MORAL OF THE STORY, WHY 

3261
03:03:35,780 --> 03:03:37,481
ARE YOU TELLING ME ALL THIS?

3262
03:03:37,481 --> 03:03:41,118
THE MORAL IS WHETHER YOU USE THE

3263
03:03:41,118 --> 03:03:43,120
PATIENT SPECIFIC PAIN PROTOCOL 

3264
03:03:43,120 --> 03:03:45,923
OR WEIGHT-BASED PAIN PROTOCOL, 

3265
03:03:45,923 --> 03:03:48,426
YOUR PATIENTS ARE GOING TO BE 

3266
03:03:48,426 --> 03:03:48,693
SATISFIED.

3267
03:03:48,693 --> 03:03:49,627
THAT'S SOMETHING WE'VE BEEN 

3268
03:03:49,627 --> 03:03:50,961
CHASING AFTER A LONG TIME.

3269
03:03:50,961 --> 03:03:56,033
THE DATA WE COLLECTED IN THE 

3270
03:03:56,033 --> 03:03:57,301
COMPARED VOE TRIAL GIVES THE 

3271
03:03:57,301 --> 03:03:59,203
INFORMATION TO GIVE THE PAIN 

3272
03:03:59,203 --> 03:04:01,038
PROTOCOLS TO MAKE PATIENTS 

3273
03:04:01,038 --> 03:04:03,074
SATISFIED WITH THEIR CARE IN THE

3274
03:04:03,074 --> 03:04:05,743
EMERGENCY ROOM DEPARTMENT.

3275
03:04:05,743 --> 03:04:09,180
A GREATER PROPORTION OF THEIR 

3276
03:04:09,180 --> 03:04:09,980
PAIN MANAGED WITH A PLAN 

3277
03:04:09,980 --> 03:04:13,651
COMPARED TO A WEIGHT-BASED 

3278
03:04:13,651 --> 03:04:14,819
PROTOCOL WERE SATISFIED WITH 

3279
03:04:14,819 --> 03:04:17,755
THEIR CARE AND I THINK THE PAIN 

3280
03:04:17,755 --> 03:04:19,290
PROTOCOLS OFFERS AN OPPORTUNITY 

3281
03:04:19,290 --> 03:04:21,225
TO IMPROVE CARE AND EXPERIENCES 

3282
03:04:21,225 --> 03:04:23,160
OF OUR SICKLE CELL WARRIORS IN 

3283
03:04:23,160 --> 03:04:25,930
THE EMERGENCY ROOM DEPARTMENT 

3284
03:04:25,930 --> 03:04:28,032
AND AS DR. TANABE SAID A WAY TO 

3285
03:04:28,032 --> 03:04:31,335
SUPPORT CLINICAL TEAMS IN MAKING

3286
03:04:31,335 --> 03:04:33,938
GOOD EVIDENCE-BASED DECISIONS 

3287
03:04:33,938 --> 03:04:35,773
HOW TO MANAGER VOE IN THE 

3288
03:04:35,773 --> 03:04:37,641
EMERGENCY ROOM DEPARTMENT.

3289
03:04:37,641 --> 03:04:39,009
I CANNOT DO THIS PRESENTATION 

3290
03:04:39,009 --> 03:04:43,647
WITHOUT TAKING A MINUTE TO SAY A

3291
03:04:43,647 --> 03:04:44,315
MASSIVE THANK YOU TO THE SICKLE 

3292
03:04:44,315 --> 03:04:45,649
CELL WARRIORS AND THEIR FAMILIES

3293
03:04:45,649 --> 03:04:49,920
WHO OPTED TO PARTICIPATE IN THE 

3294
03:04:49,920 --> 03:04:50,688
STUDY.

3295
03:04:50,688 --> 03:04:53,157
WE AS SCIENTISTS IN THE ROOM 

3296
03:04:53,157 --> 03:04:55,826
CANNOT DO OUR WORK WITHOUT THEM 

3297
03:04:55,826 --> 03:04:58,329
AND OWE THEM A GREAT DEBT OF 

3298
03:04:58,329 --> 03:05:00,331
GRATITUDE AND I LISTED THE 

3299
03:05:00,331 --> 03:05:01,932
AUTHORS FOR THE MANUSCRIPT ON 

3300
03:05:01,932 --> 03:05:04,335
THE SLIDE AND WANT TO THANK THEM

3301
03:05:04,335 --> 03:05:06,270
EACH FOR THEIR SUPPORT AND 

3302
03:05:06,270 --> 03:05:07,905
GUIDANCE AS WE DID THE 

3303
03:05:07,905 --> 03:05:09,940
MANUSCRIPT AND ANALYSIS AND TAKE

3304
03:05:09,940 --> 03:05:12,576
A MOMENT TO SAY A BIG THANK YOU 

3305
03:05:12,576 --> 03:05:15,146
TO DR. PAULA TANABE FOR BEING A 

3306
03:05:15,146 --> 03:05:16,480
GREAT MENTOR TO ME.

3307
03:05:16,480 --> 03:05:19,216
I STARTED AS A POSTDOC AND WAS 

3308
03:05:19,216 --> 03:05:21,285
ABLE TO TRANSITION TO BEING A 

3309
03:05:21,285 --> 03:05:22,219
CO-INVESTIGATOR SO IT'S BEEN A 

3310
03:05:22,219 --> 03:05:23,487
GREAT LEARNING OPPORTUNITY FOR 

3311
03:05:23,487 --> 03:05:25,823
ME AS I GROW MY OWN PERSONAL 

3312
03:05:25,823 --> 03:05:26,223
RESEARCH PROGRAM.

3313
03:05:26,223 --> 03:05:28,225
THANK YOU ALL SO MUCH FOR 

3314
03:05:28,225 --> 03:05:28,492
LISTENING.

3315
03:05:28,492 --> 03:05:39,036
I PROMISED NOT TO GO OVER TIME.

3316
03:06:06,230 --> 03:06:13,938
>> ON WEIGHT BASED VERSUS 

3317
03:06:13,938 --> 03:06:24,482
PERSONAL -- THE SECRET IS OUT OF

3318
03:06:33,757 --> 03:06:44,235
THE BAG AND THERE'S A PAIN SCORE

3319
03:06:44,969 --> 03:06:55,412
THAT WAS CLINICALLY RELEVANT.

3320
03:07:22,506 --> 03:07:24,608
THERE'S A PAIN PLAN THEY WERE 

3321
03:07:24,608 --> 03:07:25,910
TREATED ON DID THEY KNOW WHICH 

3322
03:07:25,910 --> 03:07:28,879
PAIN PLAN THEY HAD BEEN 

3323
03:07:28,879 --> 03:07:29,346
RANDOMIZED TO?

3324
03:07:29,346 --> 03:07:31,949
>> THEY DID NOT KNOW.

3325
03:07:31,949 --> 03:07:33,851
THEY WERE BLINDED IN THE STUDY 

3326
03:07:33,851 --> 03:07:35,786
AND DIDN'T KNOW IF THEY WERE 

3327
03:07:35,786 --> 03:07:36,720
PATIENT SPECIFIC OR WEIGHT 

3328
03:07:36,720 --> 03:07:37,187
BASED.

3329
03:07:37,187 --> 03:07:37,922
>> THANK YOU.

3330
03:07:37,922 --> 03:07:45,062
>> YOU'RE WELCOME.

3331
03:07:45,062 --> 03:07:47,398
>> FANTASTIC JOB, DR.
IBEMERE.

3332
03:07:47,398 --> 03:07:49,934
IN THE DOSING, IN THE WORK WE 

3333
03:07:49,934 --> 03:07:52,670
DID PRIOR TO THE COMPARE STUDY, 

3334
03:07:52,670 --> 03:07:54,838
WE HAD TWO SITES AND DID NOT 

3335
03:07:54,838 --> 03:07:56,674
GIVE A CALCULATOR.

3336
03:07:56,674 --> 03:07:59,143
WE DID NOT TELL HEMATOLOGISTS 

3337
03:07:59,143 --> 03:08:00,611
HOW TO WRITE THE PLAN.

3338
03:08:00,611 --> 03:08:04,648
IN THAT STUDY, WHICH WAS NOT 

3339
03:08:04,648 --> 03:08:07,685
TOTALLY POWERED FOR THE OUTCOME 

3340
03:08:07,685 --> 03:08:13,657
THE PATIENTS GOT A SIGNIFICANTLY

3341
03:08:13,657 --> 03:08:15,826
HIGHER DOSE THAN THE WEIGHT BASE

3342
03:08:15,826 --> 03:08:18,462
AND HAD AN IMPROVEMENT UP THEIR 

3343
03:08:18,462 --> 03:08:21,532
PAIN SCORE AND WE DID NOT REACH 

3344
03:08:21,532 --> 03:08:22,766
OUR FINAL SAMPLE SIZE BECAUSE OF

3345
03:08:22,766 --> 03:08:26,203
COVID BUT THE DOSES WERE THE 

3346
03:08:26,203 --> 03:08:29,573
SAME AND WERE LOWER THAN THE 

3347
03:08:29,573 --> 03:08:33,410
PILOT WORK HOWEVER, WE DESIGN 

3348
03:08:33,410 --> 03:08:34,378
THE CALCULATOR TO BE VERY 

3349
03:08:34,378 --> 03:08:36,780
USER -- TO BE DISSEMINATED FOR 

3350
03:08:36,780 --> 03:08:38,182
WIDESPREAD USE WITH THE GOAL OF 

3351
03:08:38,182 --> 03:08:40,117
SAFETY IN MIND.

3352
03:08:40,117 --> 03:08:42,286
IT'S A VERY SAFE CALCULATOR.

3353
03:08:42,286 --> 03:08:43,854
IF YOU LOOK AT THE PAPER 

3354
03:08:43,854 --> 03:08:46,357
PUBLISHED I THINK IN ACADEMIC 

3355
03:08:46,357 --> 03:08:50,861
EMERGENCY MEDICINE ON THIS 

3356
03:08:50,861 --> 03:08:53,130
YOU'LL SEE LOTS OF GREAT SIDE 

3357
03:08:53,130 --> 03:08:56,333
EFFECT DATA IT WAS ALL TOTALLY 

3358
03:08:56,333 --> 03:08:59,336
SAFE, NO NARCAN, NO PROBLEM.

3359
03:08:59,336 --> 03:09:00,070
IT SHOWED CONFIDENCE IN PEOPLE 

3360
03:09:00,070 --> 03:09:03,307
IN USING THE CALCULATOR.

3361
03:09:03,307 --> 03:09:04,308
BUT WITH EVERYTHING CLINICAL AS 

3362
03:09:04,308 --> 03:09:06,944
YOU WRITE THE PROTOCOLS IF THE 

3363
03:09:06,944 --> 03:09:09,013
DOSE LOOKS TOO LOW THEN IT 

3364
03:09:09,013 --> 03:09:11,148
SHOULD BE TOO HIGH.

3365
03:09:11,148 --> 03:09:14,885
SOME PATIENTS HAD 

3366
03:09:14,885 --> 03:09:16,020
EXTRAORDINARILY HIGH DOSES FROM 

3367
03:09:16,020 --> 03:09:17,755
THE CALCULATOR AND TWO OR THREE 

3368
03:09:17,755 --> 03:09:20,524
THE TEAMS DECIDED NOT TO ENROLL 

3369
03:09:20,524 --> 03:09:21,925
BECAUSE THE DOSE WOULD NEVER BE 

3370
03:09:21,925 --> 03:09:22,559
GIVEN NO MATTER WHAT.

3371
03:09:22,559 --> 03:09:22,826
THANK YOU.

3372
03:09:22,826 --> 03:09:33,070
>> THANK YOU.

3373
03:09:45,115 --> 03:09:46,383
>> SO, QUESTION HERE AND
HAVE 

3374
03:09:46,383 --> 03:09:50,421
YOU LOOKED AT IF USING A 

3375
03:09:50,421 --> 03:09:52,089
PROTOCOL CAN HELP PROVIDERS EASE

3376
03:09:52,089 --> 03:09:57,628
THEIR ANXIETY ABOUT PRESCRIBING 

3377
03:09:57,628 --> 03:09:57,961
OPIOIDS.

3378
03:09:57,961 --> 03:10:02,499
>> I THINK FROM THE ALIGN
STUDY 

3379
03:10:02,499 --> 03:10:04,868
THEY FELT COMFORTABLE USING THE 

3380
03:10:04,868 --> 03:10:11,742
DEVELOPEDIZED  -- INDIVIDUALIZED

3381
03:10:11,742 --> 03:10:13,944
OR PATIENT SPECIFIC PROTOCOLS 

3382
03:10:13,944 --> 03:10:18,515
BUT THERE'S ROOM TO DO IN THAT 

3383
03:10:18,515 --> 03:10:20,217
AREA IN ADVOCACY AND WE HAVE 

3384
03:10:20,217 --> 03:10:21,919
SOME OF THAT DATA FROM THE ALIGN

3385
03:10:21,919 --> 03:10:22,619
TRIAL.

3386
03:10:22,619 --> 03:10:23,787
>> THAT'S GREAT.

3387
03:10:23,787 --> 03:10:29,293
THE THOUGHT BEHIND THE QUESTION 

3388
03:10:29,293 --> 03:10:30,928
IS PROTOCOLS CAN HELP MITIGATE 

3389
03:10:30,928 --> 03:10:31,161
BIASES.

3390
03:10:31,161 --> 03:10:32,463
IT DOESN'T MATTER WHAT YOU THINK

3391
03:10:32,463 --> 03:10:33,831
ABOUT THE PERSON SO THAT'S 

3392
03:10:33,831 --> 03:10:34,298
GREAT.

3393
03:10:34,298 --> 03:10:34,531
THANKS.

3394
03:10:34,531 --> 03:10:36,767
>> I'M WITH YOU 100%.

3395
03:10:36,767 --> 03:10:39,069
I HAD WANTED TO MENTION IN THE 

3396
03:10:39,069 --> 03:10:41,105
PRESENTATION TOO THIS DEPICTION 

3397
03:10:41,105 --> 03:10:43,240
OF THE STIGMA AND RACIAL BIAS 

3398
03:10:43,240 --> 03:10:44,408
PEOPLE EXPERIENCE IS COMING 

3399
03:10:44,408 --> 03:10:45,909
THROUGH ON TV SHOWS.

3400
03:10:45,909 --> 03:10:49,513
IF YOU HAVEN'T SEEN IT YET, 

3401
03:10:49,513 --> 03:10:51,615
THERE'S LOTS OF NETFLIX SERIES.

3402
03:10:51,615 --> 03:10:53,851
ONE CALLED LENNOX HILL THAT 

3403
03:10:53,851 --> 03:10:56,286
DEPICTS WHAT I WAS DESCRIBING IN

3404
03:10:56,286 --> 03:10:57,955
THE INTRODUCTION OF MY 

3405
03:10:57,955 --> 03:10:59,323
PRESENTATION.

3406
03:10:59,323 --> 03:10:59,790
THANK YOU, EVERYBODY.

3407
03:10:59,790 --> 03:11:05,095
>> THANK YOU.

3408
03:11:05,095 --> 03:11:06,330
>> THANK YOU.

3409
03:11:06,330 --> 03:11:09,399
OKAY, SO WE'RE GOING TO BREAK 

3410
03:11:09,399 --> 03:11:11,201
FOR LUNCH AND COME BACK PROMPTLY

3411
03:11:11,201 --> 03:11:13,504
AT 1:30.

3412
03:11:13,504 --> 03:11:15,172
SO WE HAVE STILL VERY 

3413
03:11:15,172 --> 03:11:17,808
INTERESTING TALKS LEFT FOR THE 

3414
03:11:17,808 --> 03:11:18,175
REST OF THE DAY.

3415
03:11:18,175 --> 03:11:18,542
SEE YOU AT 1:30.

3416
03:11:18,542 --> 03:11:18,609
 

3417
03:11:25,307 --> 03:11:26,475
>> OKAY.

3418
03:11:26,475 --> 03:11:31,346
GOOD AFTERNOON, EVERYBODY.

3419
03:11:31,346 --> 03:11:33,248
WE ARE BACK WE'RE GOING TO GET 

3420
03:11:33,248 --> 03:11:34,583
STARTED WITH OUR LAST SYMPOSIUM 

3421
03:11:34,583 --> 03:11:45,093
FOR THE MEETING AND FOR TODAY.

3422
03:12:01,109 --> 03:12:06,448
THIS IS OUR THIRD ON UPDATES ON 

3423
03:12:06,448 --> 03:12:09,485
CIRCLE RBC NEUTROPHIL 

3424
03:12:09,485 --> 03:12:10,452
INTERACTIONS.

3425
03:12:10,452 --> 03:12:11,587
DR. GRACE LEE.

3426
03:12:11,587 --> 03:12:13,355
>> OKAY AS EVERYONE IN THE

3427
03:12:13,355 --> 03:12:18,193
AUDIENCE KNOWS, NEUTROPHILS ARE 

3428
03:12:18,193 --> 03:12:19,595
INCREASINGLY RECOGNIZED AS 

3429
03:12:19,595 --> 03:12:21,163
CONTRIBUTORS TO SICKLE CELL 

3430
03:12:21,163 --> 03:12:22,097
DISEASE.

3431
03:12:22,097 --> 03:12:26,835
IT'S BEEN NOBODY LEUKOCYTOSIS IS

3432
03:12:26,835 --> 03:12:29,037
RELATED TO COMPLICATIONS AND 

3433
03:12:29,037 --> 03:12:34,176
EARLY DEATH AND NEUTROPHILS ARE 

3434
03:12:34,176 --> 03:12:39,181
ACTIVATED AND FUNCTIONALLY 

3435
03:12:39,181 --> 03:12:43,785
ABNORMAL AND FOUND TO HAVE 

3436
03:12:43,785 --> 03:12:47,289
ADHESIVENESS TO THE ENDOTHELIAL 

3437
03:12:47,289 --> 03:12:48,323
CELLS AND RELATED TO 

3438
03:12:48,323 --> 03:12:50,125
COMPLICATIONS.

3439
03:12:50,125 --> 03:12:51,093
NEUTROPHILS FROM SICKLE CELL 

3440
03:12:51,093 --> 03:12:53,695
DISEASE PATIENTS ARE ALSO MORE 

3441
03:12:53,695 --> 03:12:55,197
PRONE TO EXTRA CELLULAR TRAP OR 

3442
03:12:55,197 --> 03:12:58,800
NET RELEASE AND PATIENTS WITH 

3443
03:12:58,800 --> 03:13:00,302
VASO OCCLUSIVE CRISIS AND ACUTE 

3444
03:13:00,302 --> 03:13:05,974
CHEST SYNDROME HAVE INCREASED 

3445
03:13:05,974 --> 03:13:10,846
AMOUNTS IN THEIR PLASMA.

3446
03:13:10,846 --> 03:13:21,390
IN PRIOR WORK IN SOME CONDITIONS

3447
03:13:31,300 --> 03:13:34,036
THEY ARE PREINCUBATED BEFORE 

3448
03:13:34,036 --> 03:13:44,546
EXPOSING THEM TO NEUTROPHILS.

3449
03:13:47,049 --> 03:13:50,018
THEY'RE QUANTIFIED.

3450
03:13:50,018 --> 03:13:59,494
IN THE UPPER LEFT HAND GRAPH SS 

3451
03:13:59,494 --> 03:14:01,863
RED BLOOD CELLS HAVE MORE 

3452
03:14:01,863 --> 03:14:04,800
ADHESION AND EXPOSURE TO 

3453
03:14:04,800 --> 03:14:06,201
EPINEPHRINE CAUSES FURTHER 

3454
03:14:06,201 --> 03:14:06,735
ADHESION.

3455
03:14:06,735 --> 03:14:15,777
WE CHOSE TO FOCUS ON THE A 

3456
03:14:15,777 --> 03:14:18,213
TERTIARY GRANULE FOR NEUTROPHILS

3457
03:14:18,213 --> 03:14:23,151
AND THEY WERE OFFERED FOR SS RED

3458
03:14:23,151 --> 03:14:30,592
CELLS AND THEY CAUSED THEM TO 

3459
03:14:30,592 --> 03:14:34,696
DEGRANULATE AND NEUTROPHILS WERE

3460
03:14:34,696 --> 03:14:35,430
INCUBATED AND AFTER THREE HOURS 

3461
03:14:35,430 --> 03:14:38,433
THE RELEASE OF THE NET COMPONENT

3462
03:14:38,433 --> 03:14:40,769
WAS MEASURED.

3463
03:14:40,769 --> 03:14:43,772
YOU CAN SEE SS RED CELLS CAUSED 

3464
03:14:43,772 --> 03:14:45,941
MORE NET RELEASE.

3465
03:14:45,941 --> 03:14:47,576
TOGETHER THE PREVIOUSLY 

3466
03:14:47,576 --> 03:14:51,179
PUBLISHED STUDIES SHOWED SS RED 

3467
03:14:51,179 --> 03:14:54,650
CELLS DIRECTLY ACTIVATE 

3468
03:14:54,650 --> 03:14:55,784
NEUTROPHILS AND CONTRIBUTE TO 

3469
03:14:55,784 --> 03:15:06,061
THE ACTIVATION.

3470
03:15:09,197 --> 03:15:15,170
THE GOAL IS TO DETERMINE IF THE 

3471
03:15:15,170 --> 03:15:17,973
RED CELL EXCHANGE CAN DECREASE 

3472
03:15:17,973 --> 03:15:18,273
ACTIVATION.

3473
03:15:18,273 --> 03:15:22,411
SO WITH IRB APPROVAL AND 

3474
03:15:22,411 --> 03:15:25,614
INFORMED CONSENT WE ENROLLED 

3475
03:15:25,614 --> 03:15:36,091
FROM THE DUKE OUT PATIENT  

3476
03:15:43,498 --> 03:15:49,171
APHERESIS CLINIC AND THE ASSAY 

3477
03:15:49,171 --> 03:15:56,578
FOCUSES ON TERTIARY GRANULAR 

3478
03:15:56,578 --> 03:16:00,215
RELEASE AND NEUTROPHILS HAVE AN 

3479
03:16:00,215 --> 03:16:07,255
AGONIST AND WE ALSO QUANTIFIED 

3480
03:16:07,255 --> 03:16:15,464
RED CELL EXPOSURE USING FLOW 

3481
03:16:15,464 --> 03:16:15,797
CYTOMETRY.

3482
03:16:15,797 --> 03:16:19,801
WE ENROLLED 22 PATIENTS FROM OUR

3483
03:16:19,801 --> 03:16:20,535
CLINIC.

3484
03:16:20,535 --> 03:16:22,804
EXACTLY HALF WERE MALE AND 11 

3485
03:16:22,804 --> 03:16:24,740
MALES AND THE AVERAGE AVERAGE IS

3486
03:16:24,740 --> 03:16:26,141
20 TO 60.

3487
03:16:26,141 --> 03:16:29,911
PATIENTS WERE UNDERGOING ROUTINE

3488
03:16:29,911 --> 03:16:33,215
RED CHEL EXCHANGE AND THE COMMON

3489
03:16:33,215 --> 03:16:35,250
HISTORY WAS FOR STROKE THE 

3490
03:16:35,250 --> 03:16:38,920
INDICATION FOR 54.5% OF OUR 

3491
03:16:38,920 --> 03:16:41,690
PATIENTS AND OTHER INDICATIONS 

3492
03:16:41,690 --> 03:16:52,167
FOR APHERESIS HAD PRIAPRISM.

3493
03:17:02,711 --> 03:17:04,279
SO THE FIRST FIRST OBJECTIVE WAS

3494
03:17:04,279 --> 03:17:09,084
TO DETERMINE IF THESE PATIENTS 

3495
03:17:09,084 --> 03:17:10,485
WHO WERE UNDERGOING CHRONIC RED 

3496
03:17:10,485 --> 03:17:12,621
CELL EXCHANGE IN GOOD STEADY 

3497
03:17:12,621 --> 03:17:15,223
STATE WHETHER THE PATIENTS STILL

3498
03:17:15,223 --> 03:17:18,960
HAD ACTIVATED NEUTROPHILS.

3499
03:17:18,960 --> 03:17:21,730
WE DREW WHOLE BLOOD FROM THE 22 

3500
03:17:21,730 --> 03:17:23,799
PATIENTS AS WELL AS WHOLE BLOOD 

3501
03:17:23,799 --> 03:17:29,571
FROM 22 AGE AND SEXED MATCHED 

3502
03:17:29,571 --> 03:17:31,540
HEALTHY CONTROL AND INCUBATED 

3503
03:17:31,540 --> 03:17:35,010
WITH BUFFER TO MIMIC SPONTANEOUS

3504
03:17:35,010 --> 03:17:36,845
DEGRANULATION OR THE BACTERIAL 

3505
03:17:36,845 --> 03:17:43,251
PEPTIDE DMLF OR LPS AND MEASURED

3506
03:17:43,251 --> 03:17:45,453
DEGRANULATION RESPONSES.

3507
03:17:45,453 --> 03:17:48,223
FOR ALL CONDITIONS TESTED, 

3508
03:17:48,223 --> 03:17:50,592
NEUTROPHILS FROM SICKLE CELL 

3509
03:17:50,592 --> 03:17:54,930
PATIENTS RELEASED MORE MMP9 AND 

3510
03:17:54,930 --> 03:17:55,931
DEGRANULATING TO A HIGHER 

3511
03:17:55,931 --> 03:17:56,832
EXTENT.

3512
03:17:56,832 --> 03:17:59,801
THE RESULTS SHOW THE PATIENTS 

3513
03:17:59,801 --> 03:18:01,970
RECEIVING CHRONIC RED CELL 

3514
03:18:01,970 --> 03:18:02,871
EXCHANGE HAD RESPONSES COMPARED 

3515
03:18:02,871 --> 03:18:05,941
TO HEALTHY CONTROLS.

3516
03:18:05,941 --> 03:18:10,679
SO NEXT WE WANTED TO KNOW IS 

3517
03:18:10,679 --> 03:18:14,583
HEIGHTENED DEGRANULATION 

3518
03:18:14,583 --> 03:18:18,053
RESPONSE REFLECTIVE OF 

3519
03:18:18,053 --> 03:18:18,787
LEUKOCYT

3520
03:18:18,787 --> 03:18:19,120
LEUKOCYTOSIS.

3521
03:18:19,120 --> 03:18:21,256
WE PLOTTED AGAINST WHITE COUNT 

3522
03:18:21,256 --> 03:18:23,792
SHOWN ON THE LEFT GRAPH OR 

3523
03:18:23,792 --> 03:18:25,160
ABSOLUTE NEUTROPHIL COUNT ON THE

3524
03:18:25,160 --> 03:18:27,062
RIGHT HAND GRAPH.

3525
03:18:27,062 --> 03:18:29,998
THERE WAS NO CORRELATION BETWEEN

3526
03:18:29,998 --> 03:18:33,368
DEGRANULATION RESPONSES 

3527
03:18:33,368 --> 03:18:35,170
SUGGESTING THE RESPONSES WE 

3528
03:18:35,170 --> 03:18:39,207
OBSERVED ARE NOT SIMPLY DUE TO 

3529
03:18:39,207 --> 03:18:39,774
CELL COUNT.

3530
03:18:39,774 --> 03:18:48,116
S TO LOOK AT THE EFFECT OF RED 

3531
03:18:48,116 --> 03:18:50,118
CELL WE LOOKED AT BEFORE AND 

3532
03:18:50,118 --> 03:18:55,790
AFTER RED CELL EXCHANGE AND 

3533
03:18:55,790 --> 03:18:57,792
INCUBATED WITH BUFFER AND FLMP 

3534
03:18:57,792 --> 03:19:03,231
OR LPS AND IT CAUSED A DECLINE 

3535
03:19:03,231 --> 03:19:06,902
IN DEGRANULATION FOR ALL 

3536
03:19:06,902 --> 03:19:07,269
AGONISTS TESTED.

3537
03:19:07,269 --> 03:19:09,204
SO AFTER MAKING THAT OBSERVATION

3538
03:19:09,204 --> 03:19:12,741
WE WANTED TO KNOW IF IT WAS 

3539
03:19:12,741 --> 03:19:15,610
POSSIBLE THAT THE APHERESIS 

3540
03:19:15,610 --> 03:19:18,346
APPARATUS WAS CONTRIBUTING TO 

3541
03:19:18,346 --> 03:19:18,780
THIS OBSERVATION.

3542
03:19:18,780 --> 03:19:22,384
SO WE DECIDED TO RECRUIT A 

3543
03:19:22,384 --> 03:19:25,453
CONTROL COHORT FOR OUR RED CELL 

3544
03:19:25,453 --> 03:19:27,856
EXCHANGE STUDY COHORT.

3545
03:19:27,856 --> 03:19:31,026
SO WE CHOSE TO ENROLL FIVE 

3546
03:19:31,026 --> 03:19:33,228
PATIENTS WITH NEUROLOGIC 

3547
03:19:33,228 --> 03:19:35,764
DISORDERS UNDERGOING ROUTINE OUT

3548
03:19:35,764 --> 03:19:37,165
PATIENT PLASMA EXCHANGE.

3549
03:19:37,165 --> 03:19:38,433
THE REASON WE CHOSE THIS IS 

3550
03:19:38,433 --> 03:19:41,569
BECAUSE THE PATIENTS WERE 

3551
03:19:41,569 --> 03:19:42,737
UNDERGOING REGULARLY SCHEDULED 

3552
03:19:42,737 --> 03:19:44,639
OUT PATIENT PROCEDURES.

3553
03:19:44,639 --> 03:19:46,274
THE PLASMA EXCHANGE USES THE 

3554
03:19:46,274 --> 03:19:48,576
SAME APHERESIS EXCHANGE AS THE 

3555
03:19:48,576 --> 03:19:50,011
RED CELL EXCHANGE AND USES THE 

3556
03:19:50,011 --> 03:19:55,083
TUBING SET SO IT WOULD MIMIC 

3557
03:19:55,083 --> 03:19:57,352
BLOOD CIRCULATING THROUGH THE 

3558
03:19:57,352 --> 03:19:57,585
CIRCUIT.

3559
03:19:57,585 --> 03:19:59,287
AND IN THE LITTLE TABLE IS THE 

3560
03:19:59,287 --> 03:20:00,655
DEMOGRAPHICS FOR THE FIVE 

3561
03:20:00,655 --> 03:20:01,556
CONTROL PATIENTS.

3562
03:20:01,556 --> 03:20:04,793
WE HAVE ONE MALE AND FOUR MALE.

3563
03:20:04,793 --> 03:20:07,162
THE AVERAGE AGE WAS 46.2 YEARS 

3564
03:20:07,162 --> 03:20:13,168
RANGING FROM 20 TO 61.

3565
03:20:13,168 --> 03:20:18,006
THREE PATIENT WITH DIFFERENT 

3566
03:20:18,006 --> 03:20:18,306
CONDITIONS.

3567
03:20:18,306 --> 03:20:20,375
ON THE GRAPHS SHOWN TO THE RIGHT

3568
03:20:20,375 --> 03:20:22,143
WE PLOTTED THE SICKLE CELL 

3569
03:20:22,143 --> 03:20:23,078
PATIENTS IN GREEN.

3570
03:20:23,078 --> 03:20:25,814
THESE ARE THE 22 PATIENTS WITH 

3571
03:20:25,814 --> 03:20:27,349
SICKLE CELL DISEASE WHO ARE 

3572
03:20:27,349 --> 03:20:29,584
UNDERGOING RED CELL EXCHANGE AND

3573
03:20:29,584 --> 03:20:33,555
PLOTTED THE FIVE PLASMA EXCHANGE

3574
03:20:33,555 --> 03:20:34,356
APPRECIATES IN GRAY.

3575
03:20:34,356 --> 03:20:38,326
YOU CAN SEE FOR ALL THE AGONISTS

3576
03:20:38,326 --> 03:20:40,495
TESTED IT CAUSED A DECLINE IN 

3577
03:20:40,495 --> 03:20:46,034
CELL DE GRANULATION AND THE 

3578
03:20:46,034 --> 03:20:47,268
PLASMA EXCHANGE PROCEDURE DID 

3579
03:20:47,268 --> 03:20:49,004
NOT CAUSE A DEPARISHABLE DECLINE

3580
03:20:49,004 --> 03:20:51,239
IN RESPONSES.

3581
03:20:51,239 --> 03:20:53,308
THE FINDINGS SUGGEST THE 

3582
03:20:53,308 --> 03:20:58,446
MODULATION OF DEGRANULATION IS 

3583
03:20:58,446 --> 03:21:00,648
NOT JUST DUE TO BLOOD TRAVELLING

3584
03:21:00,648 --> 03:21:03,284
THROUGH THE SECTOR AND FLOWING 

3585
03:21:03,284 --> 03:21:10,558
THROUGH THE TUBING.

3586
03:21:10,558 --> 03:21:13,061
SO BECAUSE OF PRIOR STUDIES HAD 

3587
03:21:13,061 --> 03:21:19,734
SHOWN SS RED CELLS ARE ABLE TO 

3588
03:21:19,734 --> 03:21:22,170
DIRECT RED CELLS AND WANTED TO 

3589
03:21:22,170 --> 03:21:24,105
LOOK AT THE CORRELATION OF THE 

3590
03:21:24,105 --> 03:21:27,642
DECLINE IN GRANULELATION WE WERE

3591
03:21:27,642 --> 03:21:27,909
OBSERVING.

3592
03:21:27,909 --> 03:21:31,379
WE PLOTTED DEGRANULATION 

3593
03:21:31,379 --> 03:21:34,983
RESPONSES ON THE Y AXIS AGAINST 

3594
03:21:34,983 --> 03:21:36,718
HEMOGLOBIN ON THE X AXIS.

3595
03:21:36,718 --> 03:21:39,554
YOU SEE FROM THE LEFT 

3596
03:21:39,554 --> 03:21:42,323
SPONTANEOUS DEGRANULATION WAS 

3597
03:21:42,323 --> 03:21:46,828
NOT SIGNIFICANTLY CORRELATED 

3598
03:21:46,828 --> 03:21:49,230
WITH HEMOGLOBIN S LEVELS AND THE

3599
03:21:49,230 --> 03:21:52,333
RESPONSE TO LPS WAS STRONGLY 

3600
03:21:52,333 --> 03:21:53,468
CORRELATED WITH HEMOGLOBIN 

3601
03:21:53,468 --> 03:21:58,373
LEVELS AND IT SUGGESTS RED CELL 

3602
03:21:58,373 --> 03:22:03,244
EXCHANGE MAY REMOVE CELLS AND 

3603
03:22:03,244 --> 03:22:03,812
TRANSFUSE HEALTHY DONOR RED 

3604
03:22:03,812 --> 03:22:04,946
CELLS.

3605
03:22:04,946 --> 03:22:07,549
THE LAST QUESTION WE WANTED TO 

3606
03:22:07,549 --> 03:22:10,652
START TO TACKLE WAS HOW LONG IS 

3607
03:22:10,652 --> 03:22:11,886
THE EFFECT OF RED CELL EXCHANGE.

3608
03:22:11,886 --> 03:22:13,788
ALL THE STUDIES I SHOWED YOU 

3609
03:22:13,788 --> 03:22:16,524
WERE DONE ON BLOOD DRAWN PRIOR 

3610
03:22:16,524 --> 03:22:18,760
TO RED CELL EXCHANGE AND AFTER.

3611
03:22:18,760 --> 03:22:22,397
WE WANTED TO SEE IF THERE WAS A 

3612
03:22:22,397 --> 03:22:24,399
LONGER AFFECT OF RED CELL 

3613
03:22:24,399 --> 03:22:24,632
ZHARCHK.

3614
03:22:24,632 --> 03:22:27,235
SO TO ANSWER THIS QUESTION WE 

3615
03:22:27,235 --> 03:22:30,772
ENROLLED TWO PATIENTS AND 

3616
03:22:30,772 --> 03:22:33,875
PERFORMED LONGITUDINAL STUDIES 

3617
03:22:33,875 --> 03:22:36,911
AND HAD BLOOD DRAWN PRIOR AND 

3618
03:22:36,911 --> 03:22:38,513
AFTER RED CELL EXCHANGE AND 

3619
03:22:38,513 --> 03:22:41,516
AFTER DAY THREE AND DAY SEVEN 

3620
03:22:41,516 --> 03:22:43,785
AND WEEKLY THEREAFTER FOR A 

3621
03:22:43,785 --> 03:22:45,286
ONE-MONTH PERIOD.

3622
03:22:45,286 --> 03:22:49,224
ON THE TOP TWO GRAPHS ARE 

3623
03:22:49,224 --> 03:22:55,997
DEGRANULATION TO PLA AND MLLF 

3624
03:22:55,997 --> 03:22:57,065
AND YOU SEE THEY START TO 

3625
03:22:57,065 --> 03:22:58,900
REBOUND AND GO BACK UP TO 

3626
03:22:58,900 --> 03:23:04,772
BASELINE BY DAY SEVEN AFTER RED 

3627
03:23:04,772 --> 03:23:09,310
CELL EXCHANGE AND FLUCTUATE AND 

3628
03:23:09,310 --> 03:23:12,780
YOU SEE THE RESPONSES TO LPS AND

3629
03:23:12,780 --> 03:23:13,014
BUFFER.

3630
03:23:13,014 --> 03:23:18,319
YOU CAN SEE WITH LPS AND BUFFER 

3631
03:23:18,319 --> 03:23:19,687
THE GRANULATION RESPONSE BUT 

3632
03:23:19,687 --> 03:23:21,289
REMAIN DEPRESSED FOR A LONGER 

3633
03:23:21,289 --> 03:23:22,557
PERIOD OF TIME AND DON'T START 

3634
03:23:22,557 --> 03:23:25,360
TO REBOUND BACK TO BASELINE 

3635
03:23:25,360 --> 03:23:26,761
UNTIL SOMEWHERE BETWEEN DAY 21 

3636
03:23:26,761 --> 03:23:27,629
AND DAY 28.

3637
03:23:27,629 --> 03:23:30,231
IN THE BOTTOM TWO PANELS WE 

3638
03:23:30,231 --> 03:23:32,133
PLOTTED THE PATIENTS WHITE 

3639
03:23:32,133 --> 03:23:35,203
COUNT, ABSOLUTE NEUTROPHIL COUNT

3640
03:23:35,203 --> 03:23:36,404
AND HEMOGLOBIN LEVELS AT THE 

3641
03:23:36,404 --> 03:23:37,205
STUDY TIME POINTS.

3642
03:23:37,205 --> 03:23:39,274
THE RESULTS TOGETHER SUGGEST 

3643
03:23:39,274 --> 03:23:41,809
THAT RED CELL EXCHANGE HAS A 

3644
03:23:41,809 --> 03:23:45,380
SUSTAINED EFFECT ON NEUTROPHIL 

3645
03:23:45,380 --> 03:23:46,648
DEGRANULATION BEYOND THE 

3646
03:23:46,648 --> 03:23:53,755
IMMEDIATE POST-PROCEDURE PERIOD.

3647
03:23:53,755 --> 03:23:56,124
THE NEXT QUESTION IS WHAT IS 

3648
03:23:56,124 --> 03:23:58,026
CAUSING THE DEGRANULATION WITH 

3649
03:23:58,026 --> 03:23:59,494
RED CELL EXCHANGE.

3650
03:23:59,494 --> 03:24:03,164
THIS IS SOMETHING OUR GROUP IS 

3651
03:24:03,164 --> 03:24:03,798
INVESTIGATING.

3652
03:24:03,798 --> 03:24:07,702
AS A FIRST ATTEMPT FOR MECHANISM

3653
03:24:07,702 --> 03:24:09,237
WE FOCUSSED ON THE EXPOSURE.

3654
03:24:09,237 --> 03:24:11,773
ON THE LEFT GRAPH HEALTHY DONOR 

3655
03:24:11,773 --> 03:24:20,148
NEUTROPHILS WERE INCUBATED WITH 

3656
03:24:20,148 --> 03:24:30,625
RED CELLS IT CAUSED HEALTHY 

3657
03:24:32,660 --> 03:24:34,896
NEUTROPHILS TO DEGRANULATE AND 

3658
03:24:34,896 --> 03:24:37,932
CELLS THAT HAD INCREASED SS 

3659
03:24:37,932 --> 03:24:38,733
EXPOSURE CAUSED A GREATER 

3660
03:24:38,733 --> 03:24:40,468
INCREASE IN DEGRANULATION.

3661
03:24:40,468 --> 03:24:42,237
BUILDING ON THE RESULTS IN THE 

3662
03:24:42,237 --> 03:24:44,005
RIGHT GRAPH WE THEN MEASURED PS 

3663
03:24:44,005 --> 03:24:46,507
EXPOSURE ON CIRCULATING RED 

3664
03:24:46,507 --> 03:24:48,109
CELLS AND SICKLE CELL PATIENTS 

3665
03:24:48,109 --> 03:24:50,245
BEFORE RED CELL EXCHANGE AND 

3666
03:24:50,245 --> 03:24:50,445
AFTER.

3667
03:24:50,445 --> 03:24:52,780
AND YOU CAN SEE THERE WAS AN 

3668
03:24:52,780 --> 03:24:55,783
OVER ALL DECLINE IN PS EXPOSURE 

3669
03:24:55,783 --> 03:25:02,323
WITH APHERESIS.

3670
03:25:02,323 --> 03:25:07,295
IN SUMMARY, RED CELL EXCHANGE 

3671
03:25:07,295 --> 03:25:11,666
MODULATES RESPONSE AND DECLINE 

3672
03:25:11,666 --> 03:25:13,801
IN HEMOGLOBIN S LEVELS AND THE 

3673
03:25:13,801 --> 03:25:15,770
AFFECT OF RED CELL EXCHANGE IS 

3674
03:25:15,770 --> 03:25:17,405
SUSTAINED OVER SEVERAL DAYS.

3675
03:25:17,405 --> 03:25:20,808
PS EXPOSURE INDUCES NEUTROPHIL 

3676
03:25:20,808 --> 03:25:23,778
DEGRANULATION AND EXPOSURE 

3677
03:25:23,778 --> 03:25:26,481
DECLINES WITH RED CELL EXCHANGE.

3678
03:25:26,481 --> 03:25:30,151
OUR FINDINGS RAISE THE 

3679
03:25:30,151 --> 03:25:31,753
POSSIBILITY THAT TRADITIONAL RED

3680
03:25:31,753 --> 03:25:35,056
CELL EXCHANGE END POINTS MAY BE 

3681
03:25:35,056 --> 03:25:35,990
INADEQUATE TO ASSESS THE 

3682
03:25:35,990 --> 03:25:39,327
EXCHANGE AND THE FUNCTIONAL END 

3683
03:25:39,327 --> 03:25:41,763
POINTS TO DEMONSTRATE ACTIVATION

3684
03:25:41,763 --> 03:25:43,765
MAY BE BENEFICIAL.

3685
03:25:43,765 --> 03:25:50,071
AS I EXPLAIN WHAT AMONG  

3686
03:25:50,071 --> 03:25:52,940
MODULATES IS UNCLEAR AND IT'S 

3687
03:25:52,940 --> 03:25:54,809
ONE MECHANISM DECREASING 

3688
03:25:54,809 --> 03:25:55,810
NEUTROPHIL ACTIVATION AND 

3689
03:25:55,810 --> 03:25:58,346
ONGOING STUDIES IN OUR LAB ARE 

3690
03:25:58,346 --> 03:26:01,582
FOCUSSING ON ADHESION RECEPTORS 

3691
03:26:01,582 --> 03:26:08,956
ON SS RED CELLS AND THE 

3692
03:26:08,956 --> 03:26:10,458
INHIBITOR BY WHICH RED CELLS 

3693
03:26:10,458 --> 03:26:11,793
TRANSFUSION MAY BE MODULATING 

3694
03:26:11,793 --> 03:26:14,062
NEUTROPHIL ACTIVITY.

3695
03:26:14,062 --> 03:26:16,331
FUTURE STUDIES ARE STILL NEEDED 

3696
03:26:16,331 --> 03:26:19,801
TO ESTABLISH THE MULTIPLE 

3697
03:26:19,801 --> 03:26:23,805
MECHANISMS BY WHICH RED CELL 

3698
03:26:23,805 --> 03:26:24,939
EXCHANGE DETERMINE INHIBITION 

3699
03:26:24,939 --> 03:26:28,142
CAN BE INCORPORATED AS THE 

3700
03:26:28,142 --> 03:26:28,743
THERAPEUTIC END POINT FOR RED 

3701
03:26:28,743 --> 03:26:31,779
CELL EXCHANGE.

3702
03:26:31,779 --> 03:26:33,448
I WANTED TO TAKE A MINUTE TO 

3703
03:26:33,448 --> 03:26:36,451
ACKNOWLEDGE THE MEMBERS OF MY 

3704
03:26:36,451 --> 03:26:38,519
LAB FOR THE STUDIES I EXPLAINED 

3705
03:26:38,519 --> 03:26:41,089
AND WANT TO THANK MY 

3706
03:26:41,089 --> 03:26:42,090
COLLABORATORS AND MENTOR 

3707
03:26:42,090 --> 03:26:44,992
DR. HELEN AND MEMBERS OF HER LAB

3708
03:26:44,992 --> 03:26:48,463
WHO PERFORMED ADHESION ASSAYS 

3709
03:26:48,463 --> 03:26:50,398
AND THE SERRIN ASSAYS AND OF 

3710
03:26:50,398 --> 03:26:55,803
COURSE OUR PATIENTS THAENDZ 

3711
03:26:55,803 --> 03:26:56,371
APHERESIS NURSES.

3712
03:26:56,371 --> 03:26:58,139
GOOD AND THE APHERESIS NURSES.

3713
03:26:58,139 --> 03:26:59,807
THANK YOU.

3714
03:26:59,807 --> 03:27:10,051
>> THANK YOU.

3715
03:27:13,955 --> 03:27:17,492
>> DID YOU LOOK AT
RETICULOCYTE 

3716
03:27:17,492 --> 03:27:28,035
COUNT OR HEMOGLOBIN S TO COMPARE

3717
03:27:58,900 --> 03:28:02,804
>> CAN YOU SEE AT THE 

3718
03:28:02,804 --> 03:28:03,171
FORMULATION.

3719
03:28:03,171 --> 03:28:05,506
>> I DID NOT LOOK AT THE
OTHER 

3720
03:28:05,506 --> 03:28:06,274
FRACTIONS SO THAT'S A FANTASTIC 

3721
03:28:06,274 --> 03:28:15,016
IDEA.

3722
03:28:15,016 --> 03:28:19,787
>> WE HAVE A QUESTION
ONLINE.

3723
03:28:19,787 --> 03:28:22,223
SHE'S ASKING GREAT STUDY ARE 

3724
03:28:22,223 --> 03:28:24,425
THERE PLANS TO LOOK AT THIS PRE 

3725
03:28:24,425 --> 03:28:26,360
AND POST TRANSFORMATIVE 

3726
03:28:26,360 --> 03:28:32,400
THERAPIES AS WELL?

3727
03:28:32,400 --> 03:28:34,035
>> SHE ASKED ARE THERE
PLANS TO 

3728
03:28:34,035 --> 03:28:37,939
LOOK AT THIS PRE AND POST 

3729
03:28:37,939 --> 03:28:39,373
TRANSFORMATIVE THERAPIES AS 

3730
03:28:39,373 --> 03:28:39,574
WELL.

3731
03:28:39,574 --> 03:28:41,909
>> TRANSFORMATIVE
THERAPIES?

3732
03:28:41,909 --> 03:28:42,543
>> YES.

3733
03:28:42,543 --> 03:28:43,878
>> OH, THAT WOULD BE
FANTASTIC 

3734
03:28:43,878 --> 03:28:44,712
TO DO.

3735
03:28:44,712 --> 03:28:46,380
I DID NOT THINK ABOUT THAT BUT 

3736
03:28:46,380 --> 03:28:48,015
THAT WOULD ALSO BE VERY VERY 

3737
03:28:48,015 --> 03:28:53,221
INTERESTING.

3738
03:28:53,221 --> 03:28:55,456
>> ANOTHER QUESTION FROM
MARK 

3739
03:28:55,456 --> 03:28:55,690
WALTERS.

3740
03:28:55,690 --> 03:28:58,993
ANY IDEA WHAT THE CALCIUM 

3741
03:28:58,993 --> 03:29:02,897
EXPOSURE IN THE APHERESIS HAS ON

3742
03:29:02,897 --> 03:29:03,197
ACTIVATION?

3743
03:29:03,197 --> 03:29:06,701
YOUR DATA WERE A BIT AMBIGUOUS.

3744
03:29:06,701 --> 03:29:11,272
HE MEANT CO2 CALCIUM DEPLETION.

3745
03:29:11,272 --> 03:29:12,473
>> CALCIUM DEPLETION?

3746
03:29:12,473 --> 03:29:13,641
>> YES.

3747
03:29:13,641 --> 03:29:16,043
>> THE WHOLE BLOT IS NOT
DRAWN 

3748
03:29:16,043 --> 03:29:17,645
FROM THE APHERESIS CIRCUIT.

3749
03:29:17,645 --> 03:29:19,814
THE BLOOD FROM THE PATIENT IS 

3750
03:29:19,814 --> 03:29:22,717
DRAWN FROM THE PATIENT'S BODY 

3751
03:29:22,717 --> 03:29:26,821
FROM THEIR CENTRAL LINE OR 

3752
03:29:26,821 --> 03:29:29,257
PERIPHERAL IVs.

3753
03:29:29,257 --> 03:29:31,759
NOT NOT DRAWN FROM THE APHERESIS

3754
03:29:31,759 --> 03:29:34,996
CIRCUIT AND THEY'RE DRAWN FROM 

3755
03:29:34,996 --> 03:29:40,334
THE PRE-PROCEDURE LAB AND NOT 

3756
03:29:40,334 --> 03:29:48,209
DRAWN FROM THE APHERESIS TUBING.

3757
03:29:48,209 --> 03:29:49,577
>> NO MORE QUESTIONS
ONLINE.

3758
03:29:49,577 --> 03:29:52,280
LET'S MOVE ON TO THE NEXT 

3759
03:29:52,280 --> 03:29:54,882
PRESENTATION THIS IS ONE FROM 

3760
03:29:54,882 --> 03:29:58,853
UPDATE FROM ASH REGISTRY 

3761
03:29:58,853 --> 03:29:59,453
COLLABORATORS ON SICKLE CELL 

3762
03:29:59,453 --> 03:30:02,390
DISEASE NET WORK APPROACH TO 

3763
03:30:02,390 --> 03:30:06,060
DEVELOPING DATA QUALITY IN LARGE

3764
03:30:06,060 --> 03:30:07,662
NATIONAL REGISTRIES AND GOING TO

3765
03:30:07,662 --> 03:30:09,697
BE PRESENTED BY DR. ALEXIS 

3766
03:30:09,697 --> 03:30:12,466
THOMPSON OF CHILDREN'S HOSPITAL 

3767
03:30:12,466 --> 03:30:14,669
OF PHILADELPHIA AND DR. TED WUN 

3768
03:30:14,669 --> 03:30:15,036
FROM U.C. DAVIS.

3769
03:30:15,036 --> 03:30:23,778
ALEXIS.

3770
03:30:23,778 --> 03:30:26,013
>> GOOD AFTERNOON AND
THANK YOU 

3771
03:30:26,013 --> 03:30:28,583
FOR THE OPPORTUNITY TO UPDATE 

3772
03:30:28,583 --> 03:30:31,018
THE AUDIENCE ON WORK BEING DONE 

3773
03:30:31,018 --> 03:30:33,721
BY THE ASH RESEARCH 

3774
03:30:33,721 --> 03:30:35,756
COLLABORATORS ON THE SICKLE CELL

3775
03:30:35,756 --> 03:30:41,195
NETWORK.

3776
03:30:41,195 --> 03:30:41,963
SO WHO ARE WE?

3777
03:30:41,963 --> 03:30:43,931
I HOPE MANY ARE FAMILIAR WITH 

3778
03:30:43,931 --> 03:30:49,003
THE RESEARCH COLLABORATIVE.

3779
03:30:49,003 --> 03:30:51,405
IT WAS DESIGN TO IMPROVE THE 

3780
03:30:51,405 --> 03:30:53,274
LIVES OF THOSE LIVING WITH BLOOD

3781
03:30:53,274 --> 03:30:54,775
SUPPORTERS BY SUPPORTING 

3782
03:30:54,775 --> 03:30:56,277
COLLABORATIVE PARTNERSHIPS TO 

3783
03:30:56,277 --> 03:30:57,979
FACILITATE RESEARCH AND 

3784
03:30:57,979 --> 03:30:59,780
ULTIMATELY HOPEFULLY IMPROVE 

3785
03:30:59,780 --> 03:31:01,515
PATIENT CARE.

3786
03:31:01,515 --> 03:31:03,684
CURRENTLY THE DATA HUB IS 

3787
03:31:03,684 --> 03:31:05,086
CAPABLE OF INGEST ING DATA FROM 

3788
03:31:05,086 --> 03:31:07,788
A VARIETY OF SOURCES BUT OUR 

3789
03:31:07,788 --> 03:31:09,957
PRIMARY FOCUS HAS BEEN ON THE 

3790
03:31:09,957 --> 03:31:13,227
WHOLE EMR FROM PARTICIPATING 

3791
03:31:13,227 --> 03:31:13,561
INSTITUTIONS.

3792
03:31:13,561 --> 03:31:17,064
ONCE IN THE DATA HUB WE SEE THE 

3793
03:31:17,064 --> 03:31:18,633
OPPORTUNITIES FALL INTO TWO 

3794
03:31:18,633 --> 03:31:18,933
CATEGORIES.

3795
03:31:18,933 --> 03:31:23,170
ONE TO ENHANCE CLINICAL CARE BY 

3796
03:31:23,170 --> 03:31:24,372
SUPPORTING THINGS LIKE 

3797
03:31:24,372 --> 03:31:27,141
IDENTIFYING GAPS AND VARIABILITY

3798
03:31:27,141 --> 03:31:29,477
IN PATIENT CARE ALLOWING THE 

3799
03:31:29,477 --> 03:31:31,812
INDIVIDUAL SITES TO USE THE DATA

3800
03:31:31,812 --> 03:31:34,749
HUB PORTAL TO BE ABLE TO SEE IN 

3801
03:31:34,749 --> 03:31:36,384
REAL TIME NEAR REAL TIME THE 

3802
03:31:36,384 --> 03:31:38,386
STATUS OF THEIR PATIENTS.

3803
03:31:38,386 --> 03:31:39,920
BUT TO BE ABLE TO ESSENTIALLY 

3804
03:31:39,920 --> 03:31:42,823
LOOK AT USING THAT FOR ENHANCING

3805
03:31:42,823 --> 03:31:43,691
BEST PRACTICES.

3806
03:31:43,691 --> 03:31:45,393
WE ALSO SEE THE DATA FROM THE 

3807
03:31:45,393 --> 03:31:49,296
DATA HUB BEING USED FOR RESEARCH

3808
03:31:49,296 --> 03:31:51,032
IN CREATING CONTEMPORANEOUS 

3809
03:31:51,032 --> 03:31:53,834
CONTROL GROUPS POTENTIALLY FOR 

3810
03:31:53,834 --> 03:31:54,702
POST-MARKET SURVEILLANCE, 

3811
03:31:54,702 --> 03:31:55,336
SUPPORTING 

3812
03:31:55,336 --> 03:31:56,971
INVESTIGATOR-INITIATED TRIALS 

3813
03:31:56,971 --> 03:31:58,439
AND THE POTENTIAL FOR COHORT 

3814
03:31:58,439 --> 03:31:59,807
IDENTIFICATION FOR PROSPECTIVE 

3815
03:31:59,807 --> 03:32:07,581
STUDIES.

3816
03:32:07,581 --> 03:32:09,116
THIS IS WHERE WE ARE TO DATE AND

3817
03:32:09,116 --> 03:32:10,785
HAVE GROWN SINCE WE WERE LAST 

3818
03:32:10,785 --> 03:32:11,285
YEAR.

3819
03:32:11,285 --> 03:32:13,254
WE HAVE A TOTAL OF 42 CONTRACTS 

3820
03:32:13,254 --> 03:32:15,990
EXECUTED THAT MAKE UP A TOTAL OF

3821
03:32:15,990 --> 03:32:17,658
52 SITES REPRESENTED.

3822
03:32:17,658 --> 03:32:19,360
AND THESE 52 SITES USE A VARIETY

3823
03:32:19,360 --> 03:32:23,798
OF DIFFERENT SOURCES IN TERMS OF

3824
03:32:23,798 --> 03:32:25,266
THEIR ELECTRONIC HEALTH RECORD 

3825
03:32:25,266 --> 03:32:27,301
VENDOR WITH THE PREDOMINANT 

3826
03:32:27,301 --> 03:32:28,202
BEING EPIC AND THE DATA 

3827
03:32:28,202 --> 03:32:30,337
SUBMISSION TAKES MORE THAN ONE 

3828
03:32:30,337 --> 03:32:32,006
PATHWAY WITH THE MOST COMMON 

3829
03:32:32,006 --> 03:32:37,778
ONES BEING OMOP OR FIRE API.

3830
03:32:37,778 --> 03:32:39,547
OF THE 56 SITES REPRESENTED, 

3831
03:32:39,547 --> 03:32:41,682
SOME ARE IN VARIOUS POINTS WITH 

3832
03:32:41,682 --> 03:32:44,452
SOME BEING IN THE TEST PHASE 

3833
03:32:44,452 --> 03:32:46,087
OTHERS MOVING TOWARDS PRE TEST 

3834
03:32:46,087 --> 03:32:47,788
BUT ABOUT 20 OF THEM NOW BEING 

3835
03:32:47,788 --> 03:32:49,790
IN FULL PRODUCTION AND THEREFORE

3836
03:32:49,790 --> 03:32:50,825
READILY SUBMITTING DATA AT LEAST

3837
03:32:50,825 --> 03:32:55,262
QUARTERLY.

3838
03:32:55,262 --> 03:32:58,199
THIS REPRESENTS ABOUT 25,000 

3839
03:32:58,199 --> 03:32:59,233
INDIVIDUALS WITH SICKLE CELL 

3840
03:32:59,233 --> 03:32:59,500
DISEASE.

3841
03:32:59,500 --> 03:33:00,701
THERE ARE ALSO ABOUT 12 SITES 

3842
03:33:00,701 --> 03:33:05,206
WHO HAVE ACTUALLY UNDER GONE AN 

3843
03:33:05,206 --> 03:33:06,307
ADDITIONAL EFFORT THAT INVOLVES 

3844
03:33:06,307 --> 03:33:12,713
WHAT WE CALL INVESTIGATOR 

3845
03:33:12,713 --> 03:33:14,281
VERIFICATION OF SICKLE CELL 

3846
03:33:14,281 --> 03:33:14,548
DIAGNOSIS.

3847
03:33:14,548 --> 03:33:17,218
THIS IS ATTESTATION BY THE SITE 

3848
03:33:17,218 --> 03:33:18,886
P.I. USING EXISTING SOURCE DATA 

3849
03:33:18,886 --> 03:33:21,021
TO VERIFY FROM THEIR PERSPECTIVE

3850
03:33:21,021 --> 03:33:24,992
THE DIAGNOSIS AND THIS IS 

3851
03:33:24,992 --> 03:33:26,427
COMMONLY FROM INTERNAL 

3852
03:33:26,427 --> 03:33:26,727
REGISTRIES.

3853
03:33:26,727 --> 03:33:28,863
SOMETIMES WORK IN COLLABORATION 

3854
03:33:28,863 --> 03:33:31,031
WITH OTHER DATA INITIATIVES, 

3855
03:33:31,031 --> 03:33:34,668
PROBLEM LIST AND CLINIC NOTES 

3856
03:33:34,668 --> 03:33:40,641
AND ABOUT OVER 11,000 PATIENTS 

3857
03:33:40,641 --> 03:33:45,346
HAVE NOW BEEN VERIFIED IN TERMS 

3858
03:33:45,346 --> 03:33:48,048
MUCH THEIR DIAGNOSIS.

3859
03:33:48,048 --> 03:33:49,917
WE HAVE DONE WORK AS THE DATA 

3860
03:33:49,917 --> 03:33:55,790
HUB AS IT INTERFACES WITH THE 

3861
03:33:55,790 --> 03:33:56,857
CLINICAL TRIALS DATA HUB AND 

3862
03:33:56,857 --> 03:33:58,526
DR. WUN WILL UPDATE YOU AS WELL.

3863
03:33:58,526 --> 03:34:08,903
>> THANK YOU, ALEXIS.

3864
03:34:11,672 --> 03:34:12,907
I'VE BEEN LEADING THE TEAM AND 

3865
03:34:12,907 --> 03:34:19,780
AND IN THE APPROACH OF THIS I 

3866
03:34:19,780 --> 03:34:30,291
FIRST AND SOMEONE TOLD ME ONE 

3867
03:34:42,169 --> 03:34:45,439
TIME WE UNDERSTAND WHAT THE DATA

3868
03:34:45,439 --> 03:34:51,178
AS SCIENTISTS AND THE 

3869
03:34:51,178 --> 03:34:52,746
INFORMICIST AND I WAS HONORED 

3870
03:34:52,746 --> 03:34:54,481
AND THOUGHT IT WAS A GREAT 

3871
03:34:54,481 --> 03:34:56,383
OPPORTUNITY TO CREATE A RESOURCE

3872
03:34:56,383 --> 03:35:00,621
WHICH I THINK WILL SERVE OUR 

3873
03:35:00,621 --> 03:35:01,422
COMMUNITIES AND INCLUDING OUR 

3874
03:35:01,422 --> 03:35:03,357
PATIENTS WELL.

3875
03:35:03,357 --> 03:35:06,193
THIS IS HIGHLIGHTING THE 

3876
03:35:06,193 --> 03:35:06,760
RE-ORGANIZATION OF THE ASH 

3877
03:35:06,760 --> 03:35:07,761
RESEARCH COLLABORATIVE WITH THE 

3878
03:35:07,761 --> 03:35:09,296
BOARD OF DIRECTORS.

3879
03:35:09,296 --> 03:35:11,198
THE LEADERSHIP TEAM CONSISTS OF 

3880
03:35:11,198 --> 03:35:13,467
THE CHAIRS, WHICH IS MYSELF AND 

3881
03:35:13,467 --> 03:35:14,401
THE DATA QUALITY TEAM AND THREE 

3882
03:35:14,401 --> 03:35:17,538
COMMITTEES ON THE BOTTOM, 

3883
03:35:17,538 --> 03:35:20,407
SCIENTIFIC COMMITTEES, AMANDA 

3884
03:35:20,407 --> 03:35:26,046
BRANDOW AND THE NATIONAL 

3885
03:35:26,046 --> 03:35:30,050
COMMITTEE IS LED BY BAYLOR.

3886
03:35:30,050 --> 03:35:31,852
WE'LL BE ABLE TO STEER THE OVER 

3887
03:35:31,852 --> 03:35:35,389
ALL DIRECTION OF THE PROGRAM AS 

3888
03:35:35,389 --> 03:35:36,557
WELL AS IMPLEMENT THE DESIRES OF

3889
03:35:36,557 --> 03:35:43,764
THE BOARD OF THE DIRECTORS AND 

3890
03:35:43,764 --> 03:35:48,969
AGAIN OUR CONSTITUENCIES AND I I

3891
03:35:48,969 --> 03:35:51,438
WILL CONVENE THE TEAM AND THEY 

3892
03:35:51,438 --> 03:35:52,806
WERE SELECTED BECAUSE OF THEIR 

3893
03:35:52,806 --> 03:35:55,776
EXPERIENCE AS CLINICIANS AND 

3894
03:35:55,776 --> 03:36:00,314
DEALING WITH SOME YOU MAY NOT 

3895
03:36:00,314 --> 03:36:05,286
RECOGNIZE SOME HAVE DONE LARGE 

3896
03:36:05,286 --> 03:36:06,387
PROJECTS INCORPORATING DATA FROM

3897
03:36:06,387 --> 03:36:08,923
MULTIPLE INSTITUTIONS AS WELL AS

3898
03:36:08,923 --> 03:36:10,491
ONE PERSON BEING A LITTLE 

3899
03:36:10,491 --> 03:36:15,796
PAROCHIAL WHO IS A CARD CARRYING

3900
03:36:15,796 --> 03:36:25,940
CLINI

3901
03:36:49,163 --> 03:36:49,697
CLINICAL INFORMATIST AND WHAT 

3902
03:36:49,697 --> 03:36:50,297
WITH WANT TO BE AS A REGISTRY 

3903
03:36:50,297 --> 03:36:50,931
AND RESEARCH COLLABORATIVE DATA 

3904
03:36:50,931 --> 03:36:51,565
SOURCE IS TO PROVIDE DATA THAT 

3905
03:36:51,565 --> 03:37:02,076
IS TRUSTWORTHY OF RESEARCHERS 

3906
03:37:02,343 --> 03:37:03,777
FOR DATA QUALITY EFFORT AND 

3907
03:37:03,777 --> 03:37:04,845
THAT'S OUR JOB IN THE RESEARCH 

3908
03:37:04,845 --> 03:37:11,785
COLLABORATIVE IN GENERAL IS FOR.

3909
03:37:11,785 --> 03:37:15,789
SO WE'RE PUTTING TOGETHER A 

3910
03:37:15,789 --> 03:37:17,224
REGIME.

3911
03:37:17,224 --> 03:37:18,392
AND THERE'S A BEEN DATA QUALITY 

3912
03:37:18,392 --> 03:37:22,062
CHECKS THAT HAVE GONE INTO AFTER

3913
03:37:22,062 --> 03:37:22,429
INGESTION.

3914
03:37:22,429 --> 03:37:23,998
THE FIRST IS FOR COMPLETENESS.

3915
03:37:23,998 --> 03:37:26,867
AGAIN, DATA SCIENTISTS AND THE 

3916
03:37:26,867 --> 03:37:30,337
REAL STATISTICIANS AND 

3917
03:37:30,337 --> 03:37:31,305
EPIDEMIOLOGISTS I'VE WORKED WITH

3918
03:37:31,305 --> 03:37:32,773
OVER THE LAST COUPLE DECADES 

3919
03:37:32,773 --> 03:37:34,842
TOLD ME YOU NEED TO KNOW YOUR 

3920
03:37:34,842 --> 03:37:35,275
DATA.

3921
03:37:35,275 --> 03:37:37,311
SO I LOOK AT A LOT OF SPREAD 

3922
03:37:37,311 --> 03:37:43,183
SHEETS WITH MY ANALYSTS SO I 

3923
03:37:43,183 --> 03:37:44,451
KNOW MY DATA.

3924
03:37:44,451 --> 03:37:49,056
EVERY DATA SET HAS MISSINGNESS 

3925
03:37:49,056 --> 03:37:50,324
AND ELEMENTS THAT ARE NOT CLEAR 

3926
03:37:50,324 --> 03:37:51,892
AND IT'S IMPORTANT TO KNOW THAT.

3927
03:37:51,892 --> 03:37:53,694
THE SECOND IS CONSISTENCY.

3928
03:37:53,694 --> 03:37:55,362
THIS VARIES OVER TIME.

3929
03:37:55,362 --> 03:37:56,030
FOR WHATEVER REASON JUST LIKE 

3930
03:37:56,030 --> 03:37:58,365
ALL THE THINGS WE DO IN OUR 

3931
03:37:58,365 --> 03:37:59,800
CLINICAL LIVES, THE COMPLETENESS

3932
03:37:59,800 --> 03:38:01,668
OF THE DATA, THE QUALITY OF THE 

3933
03:38:01,668 --> 03:38:03,771
DATA MAY CHANGE OVER TIME 

3934
03:38:03,771 --> 03:38:06,206
BECAUSE OUR SOURCE IS SHIFTING.

3935
03:38:06,206 --> 03:38:08,308
THOSE OF YOU WHO HAVE GONE 

3936
03:38:08,308 --> 03:38:11,478
THROUGH I DON'T KNOW HOW MANY 

3937
03:38:11,478 --> 03:38:12,713
UPGRADES OF EPIC HAVE LIVED 

3938
03:38:12,713 --> 03:38:13,380
THROUGH THIS YOURSELF.

3939
03:38:13,380 --> 03:38:16,550
SO WE NEED TO MAKE SURE AS WE 

3940
03:38:16,550 --> 03:38:18,685
CONTINUE TO INGEST  DATA FROM 

3941
03:38:18,685 --> 03:38:20,587
OUR VARIOUS SOURCES IT'S 

3942
03:38:20,587 --> 03:38:22,189
CONSISTENT AND WE ADJUST IF IT'S

3943
03:38:22,189 --> 03:38:24,892
NOT AND A BIG ONE WE WENT 

3944
03:38:24,892 --> 03:38:26,460
THROUGH IS IN THE STATES 

3945
03:38:26,460 --> 03:38:33,500
RECENTLY WAS ICD TO ICD10 AND 

3946
03:38:33,500 --> 03:38:38,505
IT'S DIZZIESING -- DIZZYING 

3947
03:38:38,505 --> 03:38:39,406
THINGS BACK AND FORTH AND I'VE 

3948
03:38:39,406 --> 03:38:40,374
BECOME APPRECIATIVE OF THE 

3949
03:38:40,374 --> 03:38:43,377
PEOPLE THAT DO THAT NOW AND WE 

3950
03:38:43,377 --> 03:38:44,812
WANT IT ACCURATE.

3951
03:38:44,812 --> 03:38:46,447
DR. THOMPSON IS LEADING A 

3952
03:38:46,447 --> 03:38:47,781
VALIDATION PROJECT AND WE HAVE 

3953
03:38:47,781 --> 03:38:49,950
AN AN INVESTIGATOR ATTESTATION 

3954
03:38:49,950 --> 03:38:51,151
TO THE DIAGNOSIS BUT THERE'S A 

3955
03:38:51,151 --> 03:38:54,688
FOLLOW ON PROJECT THAT HAS BEEN 

3956
03:38:54,688 --> 03:38:59,460
SUBMITTED AS AN ABSTRACT WE 

3957
03:38:59,460 --> 03:39:02,329
WON'T DISCUSS NOW OF DOING AN 

3958
03:39:02,329 --> 03:39:03,497
ANNUAL VALIDATION OF FORCED 

3959
03:39:03,497 --> 03:39:04,064
DOCUMENTATION.

3960
03:39:04,064 --> 03:39:07,201
WE'RE WORKING ON A QAQC PLAN 

3961
03:39:07,201 --> 03:39:10,137
THROUGH THE DATA CYCLE FROM 

3962
03:39:10,137 --> 03:39:12,005
INGESTION TO INITIAL REGISTRY TO

3963
03:39:12,005 --> 03:39:13,874
TRANSFORMATION TO A DATA 

3964
03:39:13,874 --> 03:39:15,509
WAREHOUSE TO CREATION OF 

3965
03:39:15,509 --> 03:39:16,210
ANALYTICAL DATA SETS.

3966
03:39:16,210 --> 03:39:17,978
EACH STEP ALONG THE WAY WHAT 

3967
03:39:17,978 --> 03:39:21,748
I'VE LEARNED FROM MY MENTORS AND

3968
03:39:21,748 --> 03:39:22,816
COLLABORATORS AT CALIFORNIA 

3969
03:39:22,816 --> 03:39:25,285
CANCER REGISTRY IS EACH STEP 

3970
03:39:25,285 --> 03:39:27,588
NEEDS A QAQC STEP TO MAKE SURE 

3971
03:39:27,588 --> 03:39:32,659
THE DATA IS SOUND.

3972
03:39:32,659 --> 03:39:36,530
TO GIVE A TASTE OF WHAT'S THERE 

3973
03:39:36,530 --> 03:39:42,402
THIS IS THE ACCUMULATED REGISTRY

3974
03:39:42,402 --> 03:39:47,474
NOW CLOSE TO 23,000.

3975
03:39:47,474 --> 03:39:48,442
WHAT THE YEARS REPRESENT ARE 

3976
03:39:48,442 --> 03:39:51,512
UNIQUE ENCOUNTERS.

3977
03:39:51,512 --> 03:39:53,914
IT COUNTS THE YEARS OF DIAGNOSIS

3978
03:39:53,914 --> 03:39:55,782
NOT VALIDATE AND VERIFIED 

3979
03:39:55,782 --> 03:39:57,518
DIAGNOSIS OF INDIVIDUALS THAT 

3980
03:39:57,518 --> 03:39:58,619
HAVE HIT THE VARIOUS 

3981
03:39:58,619 --> 03:40:01,088
CONTRIBUTORS OF THE DATA IN THAT

3982
03:40:01,088 --> 03:40:03,056
YEAR AND THAT'S WHY THE NUMBERS 

3983
03:40:03,056 --> 03:40:12,299
YOU CAN'T SIMPLY ADD THEM UP BUT

3984
03:40:12,299 --> 03:40:14,001
CUMULATIVELY HERE'S THE PATIENTS

3985
03:40:14,001 --> 03:40:14,334
TO DATE.

3986
03:40:14,334 --> 03:40:17,804
HERE'S A TASTE OF THE DATA 

3987
03:40:17,804 --> 03:40:19,439
AVAILABLE.

3988
03:40:19,439 --> 03:40:21,808
AS YOU KNOW THERE'S DISCHARGE 

3989
03:40:21,808 --> 03:40:25,746
DATA WITH DIAGNOSES FROM EACH 

3990
03:40:25,746 --> 03:40:29,316
ENCOUNTER FOR EMERGENCY ROOM 

3991
03:40:29,316 --> 03:40:30,517
DEPARTMENT, ETCETERA AS WELL AS 

3992
03:40:30,517 --> 03:40:30,951
PROBLEM LIST.

3993
03:40:30,951 --> 03:40:33,320
THIS IS A COMPILATION OF THE 

3994
03:40:33,320 --> 03:40:35,689
COMORBIDITIES OR COMPLICATIONS 

3995
03:40:35,689 --> 03:40:37,524
NA HAVE BEEN ENUMERATED SO FAR 

3996
03:40:37,524 --> 03:40:41,328
IN ADULT AND PEDIATRIC PATIENTS 

3997
03:40:41,328 --> 03:40:42,262
CUT OFF BEING 18.

3998
03:40:42,262 --> 03:40:45,499
THIS HAS NOT GONE THROUGH 

3999
03:40:45,499 --> 03:40:47,201
VALIDATION YET.

4000
03:40:47,201 --> 03:40:49,770
THIS IS FACE VALIDITY.

4001
03:40:49,770 --> 03:40:51,505
SOME NUMBERS RING TRUE IN OUR 

4002
03:40:51,505 --> 03:40:53,307
CLINICAL EXPERIENCES.

4003
03:40:53,307 --> 03:40:56,210
MY OWN GROUP PUBLISHED ON 

4004
03:40:56,210 --> 03:40:56,476
EMBOLISM.

4005
03:40:56,476 --> 03:40:57,878
WHAT HAS BEEN COMMENTED SO FAR 

4006
03:40:57,878 --> 03:41:01,081
BY PEOPLE IN PERSONALLY IS THE 

4007
03:41:01,081 --> 03:41:01,882
ESSENTIAL HYPERTENSION NUMBER 

4008
03:41:01,882 --> 03:41:03,350
SEEMS TO BE HIGH.

4009
03:41:03,350 --> 03:41:06,420
I WILL SAY HOWEVER THAT IN OUR 

4010
03:41:06,420 --> 03:41:09,523
OWN STATE DATA WE WENT THROUGH 

4011
03:41:09,523 --> 03:41:14,261
ACCUMULATIVE INCIDENTS EXERCISE 

4012
03:41:14,261 --> 03:41:18,131
TO DO A PARTICULAR ANALYSIS WITH

4013
03:41:18,131 --> 03:41:23,770
OUR STATE DATA FROM 91  -- 1991 

4014
03:41:23,770 --> 03:41:25,739
TO 2018 AND IT DEPENDS ON AGE 

4015
03:41:25,739 --> 03:41:29,176
BECAUSE WE USAGE SCALE FOR 

4016
03:41:29,176 --> 03:41:29,977
ACCUMULATIVE INCIDENTS.

4017
03:41:29,977 --> 03:41:31,311
I DON'T THINK THE NUMBERS ARE 

4018
03:41:31,311 --> 03:41:33,046
THAT FAR OFF.

4019
03:41:33,046 --> 03:41:35,816
IT'S A HOPE AS WE CAN USE 

4020
03:41:35,816 --> 03:41:37,050
EXTERNAL SOURCES TO VALIDATE AS 

4021
03:41:37,050 --> 03:41:44,024
WELL AS INTERNAL VALIDATION.

4022
03:41:44,024 --> 03:41:46,426
AND THIS IS NOW ONE OF THE 

4023
03:41:46,426 --> 03:41:48,428
THINGS AS WE KNOW SINCE ONE OF 

4024
03:41:48,428 --> 03:41:51,164
THE ORIGINAL COHORT STUDIES 

4025
03:41:51,164 --> 03:41:53,133
WE'VE ALL BEEN LOOKING IN THE 

4026
03:41:53,133 --> 03:41:55,135
FIELD IS A LONGITUDINAL COHORT 

4027
03:41:55,135 --> 03:41:57,504
WE CAN FOLLOW.

4028
03:41:57,504 --> 03:42:00,741
THIS IS SHOWING THOUGH IT'S LEFT

4029
03:42:00,741 --> 03:42:03,944
HEAVY RIGHT NOW, RIGHT 

4030
03:42:03,944 --> 03:42:05,612
TRUNCATED, IS THE NUMBER OF 

4031
03:42:05,612 --> 03:42:07,781
YEARS OF FOLLOW-UP ON INDIVIDUAL

4032
03:42:07,781 --> 03:42:09,483
PATIENTS AND AS TIME GOES ON THE

4033
03:42:09,483 --> 03:42:11,285
RIGHT SIDE IS GOING TO GROW 

4034
03:42:11,285 --> 03:42:13,120
WHICH WILL BE A FANTASTIC 

4035
03:42:13,120 --> 03:42:17,758
RESOURCE AND YOU CAN ALSO SEE 

4036
03:42:17,758 --> 03:42:19,593
FROM THE AGE BANDS WE'RE GOING 

4037
03:42:19,593 --> 03:42:22,763
TO FINALLY COLLECT MORE AND MORE

4038
03:42:22,763 --> 03:42:25,532
INFORMATION ON THAT GREATER THAN

4039
03:42:25,532 --> 03:42:28,068
30, GREATER THAN 45, 

4040
03:42:28,068 --> 03:42:29,336
50-YEAR-OLDS.

4041
03:42:29,336 --> 03:42:32,606
I HAVE AN 81-YEAR-OLD HEMOGLOBIN

4042
03:42:32,606 --> 03:42:34,841
SC PATIENT NOW IN MY PATIENT 

4043
03:42:34,841 --> 03:42:35,042
PANEL.

4044
03:42:35,042 --> 03:42:39,179
AS PATIENTS AGE WE'LL HOPEFULLY 

4045
03:42:39,179 --> 03:42:40,547
CREATE MORE ON THE PATIENTS.

4046
03:42:40,547 --> 03:42:46,219
AND FINALLY FOR ME WE'RE WORKING

4047
03:42:46,219 --> 03:42:49,990
IN EARNEST ON CREATING 

4048
03:42:49,990 --> 03:42:52,893
PHENOTYPES AND WE'LL BE 

4049
03:42:52,893 --> 03:42:54,761
SOLICITING INPUT FROM OUR 

4050
03:42:54,761 --> 03:42:56,997
VARIOUS COLLABORATORS AND 

4051
03:42:56,997 --> 03:42:59,333
PARTNERS ON ONE PHENOTYPES TO 

4052
03:42:59,333 --> 03:43:03,103
BUILD AND SECONDARILY FOR 

4053
03:43:03,103 --> 03:43:05,572
VALIDATION AND WHETHER THE 

4054
03:43:05,572 --> 03:43:11,545
PURPOSE IS FOR QI OR RESEARCH OR

4055
03:43:11,545 --> 03:43:12,546
CLINICAL TRIALS WITH CREATE 

4056
03:43:12,546 --> 03:43:14,047
ALGORITHMS TO FIND US THE RIGHT 

4057
03:43:14,047 --> 03:43:16,550
PATIENTS ACCURATELY AND QUICKLY.

4058
03:43:16,550 --> 03:43:17,718
THAT'S ANOTHER STEP THAT THE 

4059
03:43:17,718 --> 03:43:20,754
WHOLE GROUP NOT JUST THE QUALITY

4060
03:43:20,754 --> 03:43:21,421
GROUP WILL BE WORKING ON IN THE 

4061
03:43:21,421 --> 03:43:30,764
FUTURE.

4062
03:43:30,764 --> 03:43:31,665
I'LL LAND IT BACK TO 

4063
03:43:31,665 --> 03:43:34,101
DR. THOMPSON.

4064
03:43:34,101 --> 03:43:35,769
>> THANK YOU, TED.

4065
03:43:35,769 --> 03:43:39,539
AND WANTED TO SHOW YOU WE'RE 

4066
03:43:39,539 --> 03:43:42,676
BEGINNING TO SOLICIT AND SUPPORT

4067
03:43:42,676 --> 03:43:44,411
DATA PROJECTS AND INVESTIGATOR 

4068
03:43:44,411 --> 03:43:46,947
INITIATED STUDIES THROUGH THE 

4069
03:43:46,947 --> 03:43:47,781
CLINICAL TRIALS NETWORK AS WELL 

4070
03:43:47,781 --> 03:43:48,749
AS THE DATA HUB.

4071
03:43:48,749 --> 03:43:51,585
WE'RE NOW FINISHING THE THIRD 

4072
03:43:51,585 --> 03:43:54,988
ROUND OF PROPOSALS WITH FOUR 

4073
03:43:54,988 --> 03:43:58,492
CONCEPTS HAVING WITHIN LAUNCHED.

4074
03:43:58,492 --> 03:44:00,293
TWO LEADING TO NIH SUBMISSIONS.

4075
03:44:00,293 --> 03:44:01,762
WE HAD A SECOND ROUND OF 

4076
03:44:01,762 --> 03:44:03,563
CONCEPTS AND THE THIRD ROUND 

4077
03:44:03,563 --> 03:44:04,965
JUST COMPLETED.

4078
03:44:04,965 --> 03:44:06,500
AND SEVERAL OF THESE WILL 

4079
03:44:06,500 --> 03:44:07,367
INVOLVE REQUESTS DIRECTLY FROM 

4080
03:44:07,367 --> 03:44:09,569
THE DATA HUB.

4081
03:44:09,569 --> 03:44:12,739
SO WE'RE VERY EXCITED ABOUT THE 

4082
03:44:12,739 --> 03:44:15,375
ABILITY TO SEE THIS AMAZING 

4083
03:44:15,375 --> 03:44:16,977
RESOURCE ALREADY BEING PUSHED 

4084
03:44:16,977 --> 03:44:20,881
OUT AND THERE ARE A NUMBER OF 

4085
03:44:20,881 --> 03:44:21,848
ABSTRACTS SUBMITTED TO THE 

4086
03:44:21,848 --> 03:44:22,949
ANNUAL MEETING THIS YEAR USING 

4087
03:44:22,949 --> 03:44:24,184
DATA FROM THE DATA HUB.

4088
03:44:24,184 --> 03:44:26,953
THERE'S ALSO A NUMBER OF 

4089
03:44:26,953 --> 03:44:28,188
PUBLICATIONS ACTUALLY WITH THE 

4090
03:44:28,188 --> 03:44:29,289
DATA HUB OR THE RESEARCH 

4091
03:44:29,289 --> 03:44:34,795
NETWORK.

4092
03:44:34,795 --> 03:44:37,798
SO OUR HOPE IS FOR THOSE WHO ARE

4093
03:44:37,798 --> 03:44:39,566
MEMBERS OF THE CLINICAL TRIALS 

4094
03:44:39,566 --> 03:44:42,002
NETWORK, YOU AS A P.I. OR EVEN 

4095
03:44:42,002 --> 03:44:43,103
IF YOU'RE AN INTERESTED PERSON 

4096
03:44:43,103 --> 03:44:45,405
AT AN INSTITUTION PART OF A 

4097
03:44:45,405 --> 03:44:48,975
NETWORK YOU SHOULD FEEL FREE TO 

4098
03:44:48,975 --> 03:44:50,010
COLLABORATE WITH YOUR 

4099
03:44:50,010 --> 03:44:51,745
REPRESENTATIVE TO GET YOUR 

4100
03:44:51,745 --> 03:44:53,847
INTEREST KNOWN OR REACH OUT TO 

4101
03:44:53,847 --> 03:44:54,014
US.

4102
03:44:54,014 --> 03:44:56,149
WE'RE INTERESTED IN HEARING 

4103
03:44:56,149 --> 03:44:57,484
FEASIBILITY ASSESSMENTS, 

4104
03:44:57,484 --> 03:44:59,619
REVIEWING AND APPROVING PROTOCOL

4105
03:44:59,619 --> 03:45:00,487
WHEN LOOKING FOR COLLABORATORS 

4106
03:45:00,487 --> 03:45:03,557
OR IF YOU HAVE AN IDEA AND WOULD

4107
03:45:03,557 --> 03:45:06,793
LIKE TO FUN IT UP THE FLAG POLE 

4108
03:45:06,793 --> 03:45:09,830
OR WOULD LIKE TO USE DATA HUB 

4109
03:45:09,830 --> 03:45:10,163
DATA.

4110
03:45:10,163 --> 03:45:11,698
THIS IS THE ADDRESS YOU CAN 

4111
03:45:11,698 --> 03:45:12,365
CONTACT US FOR MORE INFORMATION.

4112
03:45:12,365 --> 03:45:22,542
THANK YOU.

4113
03:45:31,952 --> 03:45:34,154
>> I BELIEVE IN THIS AND
HOPING 

4114
03:45:34,154 --> 03:45:36,156
TO WORK WITH IT ONGOING.

4115
03:45:36,156 --> 03:45:38,925
ONE IS WHERE DO YOU FIND THE 

4116
03:45:38,925 --> 03:45:40,260
DATA TO MAKE SURE YOU'RE GETTING

4117
03:45:40,260 --> 03:45:41,895
US SUCKED INTO THE RIGHT PLACE.

4118
03:45:41,895 --> 03:45:44,164
HOW MUCH ARE YOU WITH THE LARGE 

4119
03:45:44,164 --> 03:45:48,335
GROUP ABLE TO TALK TO EPIC ABOUT

4120
03:45:48,335 --> 03:45:48,935
DESIGNING THEIR SICKLE CELL 

4121
03:45:48,935 --> 03:45:50,136
INFORMATION COLLECTION TO FIND 

4122
03:45:50,136 --> 03:45:52,539
IT IN A REASONABLE PLACE?

4123
03:45:52,539 --> 03:45:55,775
>> SO THAT CONVERSATION
HAS 

4124
03:45:55,775 --> 03:45:56,109
STARTED.

4125
03:45:56,109 --> 03:45:59,179
WE HAVE ALSO BEEN EXCITED ABOUT 

4126
03:45:59,179 --> 03:46:00,413
DISCUSSIONS WITH THE OFFICE AT 

4127
03:46:00,413 --> 03:46:02,749
THE NATIONAL COORDINATOR FOR 

4128
03:46:02,749 --> 03:46:05,919
HEALTH INFORMATION TO BE ABLE TO

4129
03:46:05,919 --> 03:46:07,454
IDENTIFY CONSISTENTLY HOW WE 

4130
03:46:07,454 --> 03:46:11,858
WILL DEFINE SICKLE CELL IN ANY 

4131
03:46:11,858 --> 03:46:14,094
DATA SET AND THOSE CONVERSATIONS

4132
03:46:14,094 --> 03:46:15,762
HAVE STARTED MOVING BEYOND EPIC 

4133
03:46:15,762 --> 03:46:17,931
AND WHAT NATIONAL STANDARDS WE 

4134
03:46:17,931 --> 03:46:20,667
CAN PUT IN PLACE IN SICKLE CELL 

4135
03:46:20,667 --> 03:46:22,002
AND EXCITED ABOUT BEING PART OF 

4136
03:46:22,002 --> 03:46:24,137
THAT AS ARE OTHERS IN THE ROOM.

4137
03:46:24,137 --> 03:46:25,672
WE THINK THAT WILL BE ONE PLACE 

4138
03:46:25,672 --> 03:46:26,172
WHERE IT STARTS.

4139
03:46:26,172 --> 03:46:30,210
FOR THOSE WHO ARE PART OF THE 

4140
03:46:30,210 --> 03:46:31,344
CLINICAL TRIAL NETWORK, EACH ONE

4141
03:46:31,344 --> 03:46:34,214
HAS BEEN GIVEN ACCESS TO A 

4142
03:46:34,214 --> 03:46:37,951
PORTAL AND THE INDIVIDUAL 

4143
03:46:37,951 --> 03:46:40,053
PATIENTS' DATA IS INGESTED EVERY

4144
03:46:40,053 --> 03:46:42,689
QUARTER AND THAT DATA INCLUDING 

4145
03:46:42,689 --> 03:46:46,826
THE DELINEATION OF THE SUB TYPES

4146
03:46:46,826 --> 03:46:47,460
OF SICKLE CELL DISEASE THERE'S 

4147
03:46:47,460 --> 03:46:49,029
TWO LINES.

4148
03:46:49,029 --> 03:46:49,996
TYPICALLY YOUR DATA AND THE 

4149
03:46:49,996 --> 03:46:51,598
AGGREGATE FOR THAT POINT IN 

4150
03:46:51,598 --> 03:46:52,065
TIME.

4151
03:46:52,065 --> 03:46:55,735
FOR THE DATA HUB AS A WHOLE.

4152
03:46:55,735 --> 03:46:56,803
SO CERTAINLY FOR MY INSTITUTION 

4153
03:46:56,803 --> 03:47:00,974
I'M ABLE TO LOOK AT COMPARING 

4154
03:47:00,974 --> 03:47:05,912
THINGS LIKE E.D. TREAT AND 

4155
03:47:05,912 --> 03:47:07,847
RELEASE AND HYDROXYUREA USE AND 

4156
03:47:07,847 --> 03:47:08,815
COMORBIDITIES TED MENTIONED AND 

4157
03:47:08,815 --> 03:47:12,385
BEING ABLE TO SEE THOSE AND ASK 

4158
03:47:12,385 --> 03:47:14,354
THAT LOOK LIKE WHAT I THINK I 

4159
03:47:14,354 --> 03:47:18,191
HAVE AND BEING ABLE TO TALK TO 

4160
03:47:18,191 --> 03:47:20,293
THE STAFF HAS BEEN TERRIFIC IN 

4161
03:47:20,293 --> 03:47:22,028
TERMS OF MY UNDERSTANDING THE 

4162
03:47:22,028 --> 03:47:23,797
DATA AND THEN ALSO UNDERSTANDING

4163
03:47:23,797 --> 03:47:28,935
MY OWN PATIENT POPULATION.

4164
03:47:28,935 --> 03:47:31,938
>> HI, MEDICAL COLLEGE OF 

4165
03:47:31,938 --> 03:47:32,205
WISCONSIN.

4166
03:47:32,205 --> 03:47:34,841
ARE YOU DOWNLOADING DISCREET 

4167
03:47:34,841 --> 03:47:38,812
DATA OR USING LARGE LANGUAGE 

4168
03:47:38,812 --> 03:47:39,613
MODELS TO MINE CLINICAL NOTES, 

4169
03:47:39,613 --> 03:47:43,216
ETCETERA?

4170
03:47:43,216 --> 03:47:44,884
>> HASN'T COME UP YET,
MARY BUT 

4171
03:47:44,884 --> 03:47:46,319
IT'S A GREAT POINT.

4172
03:47:46,319 --> 03:47:48,154
RIGHT NOW WE'RE USING DISCREET 

4173
03:47:48,154 --> 03:47:51,091
DATA BUT WE RECOGNIZE THERE'S A 

4174
03:47:51,091 --> 03:47:52,525
NUMBER OF OBSERVATIONS IN SICKLE

4175
03:47:52,525 --> 03:47:53,393
CELL DISEASE THAT WILL NOT BE 

4176
03:47:53,393 --> 03:47:55,795
INDIVIDUAL DATA ELEMENTS.

4177
03:47:55,795 --> 03:47:57,597
WE'VE ALREADY BEEN DISCUSSING 

4178
03:47:57,597 --> 03:47:59,833
WHETHER IT'S NATURAL LANGUAGE 

4179
03:47:59,833 --> 03:48:03,003
PROCESSING OR MACHINE LEARNING 

4180
03:48:03,003 --> 03:48:03,903
TO BE ABLE TO UTILIZE THOSE NEW 

4181
03:48:03,903 --> 03:48:07,073
TECHNOLOGIES TO BE ABLE TO PULL 

4182
03:48:07,073 --> 03:48:07,273
DATA.

4183
03:48:07,273 --> 03:48:08,408
WE'D ALSO EVENTUALLY LIKE TO 

4184
03:48:08,408 --> 03:48:10,043
LOOK AT PATIENT-REPORTED 

4185
03:48:10,043 --> 03:48:11,044
OUTCOMES.

4186
03:48:11,044 --> 03:48:13,747
BEING ABLE TO LOOK AT HOW WE 

4187
03:48:13,747 --> 03:48:15,248
TAKE OUR PLATFORM AND ARE ABLE 

4188
03:48:15,248 --> 03:48:18,818
TO LOOK AT VALIDATED -- 

4189
03:48:18,818 --> 03:48:21,521
HOPEFULLY VALIDATED PRL TOOLS --

4190
03:48:21,521 --> 03:48:27,527
>> MAYBE WE SHOULD TALK
SOME 

4191
03:48:27,527 --> 03:48:28,361
TIME.

4192
03:48:28,361 --> 03:48:33,233
BUT THE OTHER WHAT INCIDENTS 

4193
03:48:33,233 --> 03:48:34,367
DEPEND ON WHERE YOU PULL IT FROM

4194
03:48:34,367 --> 03:48:43,143
AND HOW YOU DEFINE IT.

4195
03:48:43,143 --> 03:48:45,445
THAT'S DIFFERENT FROM SAYING WAS

4196
03:48:45,445 --> 03:48:47,280
THERE A HYPERTENSION MEDICATION.

4197
03:48:47,280 --> 03:48:51,317
DO YOU KNOW HOW THOSE INCIDENTS 

4198
03:48:51,317 --> 03:48:51,785
WERE GENERATED?

4199
03:48:51,785 --> 03:48:54,187
>> SO I'LL TELL YOU A
COUPLE 

4200
03:48:54,187 --> 03:48:54,854
THINGS.

4201
03:48:54,854 --> 03:48:57,857
ONE IS I DIDN'T MENTION THE 

4202
03:48:57,857 --> 03:48:58,792
DETAILS OF THE DIFFERENT 

4203
03:48:58,792 --> 03:49:00,560
PROJECTS IN TERMS OF WHAT WE 

4204
03:49:00,560 --> 03:49:01,294
AGREED TO SUPPORT.

4205
03:49:01,294 --> 03:49:03,163
SEVERAL ARE ASKING THE KIND OF 

4206
03:49:03,163 --> 03:49:05,265
QUESTIONS YOU'RE ASKING ABOUT 

4207
03:49:05,265 --> 03:49:07,167
VERY SPECIFIC SUB POPULATIONS OF

4208
03:49:07,167 --> 03:49:07,434
PATIENTS.

4209
03:49:07,434 --> 03:49:10,770
SO WHETHER IT'S LOOKING AT CKD 

4210
03:49:10,770 --> 03:49:14,441
OR PAIN OR AKI BUT LOOKING AT 

4211
03:49:14,441 --> 03:49:17,577
DIFFERENT MODELS ON HOW ONE 

4212
03:49:17,577 --> 03:49:18,478
ACTUALLY DRILLS DOWN ON 

4213
03:49:18,478 --> 03:49:19,779
ASSESSMENTS IN THOSE DIFFERENT 

4214
03:49:19,779 --> 03:49:21,581
AREAS OF COMORBIDITIES.

4215
03:49:21,581 --> 03:49:23,783
THAT'S WHAT SOME OF THOSE EARLY 

4216
03:49:23,783 --> 03:49:24,284
REQUESTS WERE.

4217
03:49:24,284 --> 03:49:26,786
>> THANK YOU.

4218
03:49:26,786 --> 03:49:28,988
>> TO ELABORATE ON THAT, I
THINK

4219
03:49:28,988 --> 03:49:31,057
FOR NOW WHAT HAS BEEN DONE IS A 

4220
03:49:31,057 --> 03:49:32,659
STRUCTURED DATA ELEMENT.

4221
03:49:32,659 --> 03:49:34,561
THERE IS A CAPABILITY AND THE 

4222
03:49:34,561 --> 03:49:36,996
NOTES HAVE BEEN INGESTED.

4223
03:49:36,996 --> 03:49:38,131
THERE'S A CAPABILITY THEY'RE 

4224
03:49:38,131 --> 03:49:40,033
WORKING ON TO LOOK FOR THOSE 

4225
03:49:40,033 --> 03:49:42,902
OTHER THINGS AND THEN I THINK 

4226
03:49:42,902 --> 03:49:45,538
THE PHENOTYPE THAT'S GOING TO BE

4227
03:49:45,538 --> 03:49:47,741
FOR ME INTELLECTUALLY THE MOST 

4228
03:49:47,741 --> 03:49:50,543
INTERESTING PART IS USING A 

4229
03:49:50,543 --> 03:49:52,779
COMBINATION OF STRUCTURED DATA 

4230
03:49:52,779 --> 03:49:54,848
OF THINGS YOU GET FROM THE NLP 

4231
03:49:54,848 --> 03:49:58,852
TO CHANGE TO STRUCTURED DATA AND

4232
03:49:58,852 --> 03:50:02,188
PRESCRIBING AND DISPENSING 

4233
03:50:02,188 --> 03:50:03,289
INFORMATION TO SAY YOU ONLY 

4234
03:50:03,289 --> 03:50:05,225
COUNT HYPERTENSION IF IT'S 

4235
03:50:05,225 --> 03:50:08,695
MENTIONED THREE TIMES AND GIVEN 

4236
03:50:08,695 --> 03:50:09,696
THE HYPERTENSIVE MEDICINE OR 

4237
03:50:09,696 --> 03:50:20,106
WHAT THE MEDICINES ARE.

4238
03:50:20,974 --> 03:50:26,980
>> THE DATA IS
CONSIDERING.

4239
03:50:26,980 --> 03:50:30,717
I'M SYMPATHETIC TO THE PROCESS.

4240
03:50:30,717 --> 03:50:33,353
>> BUT THEN AGAIN INGEST
ING 

4241
03:50:33,353 --> 03:50:35,221
DIFFERENT TYPES OF DATA AS WITH 

4242
03:50:35,221 --> 03:50:38,892
OTHER CONSOLIDATED DATA 

4243
03:50:38,892 --> 03:50:41,494
WAREHOUSES AS DR. THOMPSON 

4244
03:50:41,494 --> 03:50:45,665
MENTIONED IS IMAGING DATA AND 

4245
03:50:45,665 --> 03:50:51,704
SITES CAN DO IT WITH GEEM OMIC 

4246
03:50:51,704 --> 03:50:57,977
DATA -- GENOMIC DATA.

4247
03:50:57,977 --> 03:50:59,579
>> CAN ANY CONSORTIUM
JOIN?

4248
03:50:59,579 --> 03:51:05,785
>> WE HOPE SO.

4249
03:51:05,785 --> 03:51:07,654
WE'RE HOPEFUL THAT WE'RE GOING 

4250
03:51:07,654 --> 03:51:09,756
TO CLEAR THAT WITHIN THE NEXT --

4251
03:51:09,756 --> 03:51:12,125
WE'RE HOPING THE NEXT 12 TO 18 

4252
03:51:12,125 --> 03:51:15,628
MONTHS AND THEN WE'LL BE OPEN TO

4253
03:51:15,628 --> 03:51:17,597
RECEIVING MORE SITES THAT WOULD 

4254
03:51:17,597 --> 03:51:18,431
BE INTERESTING.

4255
03:51:18,431 --> 03:51:19,666
THE QUESTION HAS ALREADY BEEN 

4256
03:51:19,666 --> 03:51:20,733
RAISED ABOUT INTERNATIONAL.

4257
03:51:20,733 --> 03:51:22,235
I THINK THAT IS ABSOLUTELY 

4258
03:51:22,235 --> 03:51:24,671
SOMETHING THAT WE WANT TO TALK 

4259
03:51:24,671 --> 03:51:25,104
ABOUT.

4260
03:51:25,104 --> 03:51:26,506
>> FOR PRACTICAL PURPOSES
SHOULD

4261
03:51:26,506 --> 03:51:28,474
I SEND AN E-MAIL TO PUT 

4262
03:51:28,474 --> 03:51:30,910
OURSELVES ON THE WAIT LIST?

4263
03:51:30,910 --> 03:51:31,311
>> PLEASE.

4264
03:51:31,311 --> 03:51:32,846
>> I THINK THE PROCESS IS 

4265
03:51:32,846 --> 03:51:33,613
BECOMING FASTER.

4266
03:51:33,613 --> 03:51:37,116
I KNOW WE'RE RUNNING OUT OF 

4267
03:51:37,116 --> 03:51:37,317
TIME.

4268
03:51:37,317 --> 03:51:40,086
RIGHT NOW THOSE PARTICIPATING IN

4269
03:51:40,086 --> 03:51:44,357
MANY DATA INITIATIVES WHETHER 

4270
03:51:44,357 --> 03:51:47,327
IT'S NCATS OR ALL THESE THINGS, 

4271
03:51:47,327 --> 03:51:49,395
RIGHT NOW THERE HAVE BEEN MANY 

4272
03:51:49,395 --> 03:51:50,296
COMPETING MODELS.

4273
03:51:50,296 --> 03:51:51,931
IT'S VERY DIFFICULT.

4274
03:51:51,931 --> 03:51:54,000
I THINK PEOPLE ARE NOW 

4275
03:51:54,000 --> 03:51:55,802
AGGREGATING OR CONVERGING ON TO 

4276
03:51:55,802 --> 03:51:57,637
A COUPLE THINGS.

4277
03:51:57,637 --> 03:52:02,876
FOR YOUR OWN I.T. DEPARTMENTS IT

4278
03:52:02,876 --> 03:52:03,443
WILL BECOME EASIER.

4279
03:52:03,443 --> 03:52:07,780
>> ANY QUESTIONS ONLINE?

4280
03:52:07,780 --> 03:52:09,282
NO QUESTIONS ONLINE.

4281
03:52:09,282 --> 03:52:09,682
THANK YOU SO MUCH.

4282
03:52:09,682 --> 03:52:16,689
>> THANK YOU.

4283
03:52:16,689 --> 03:52:17,490
>> OKAY.

4284
03:52:17,490 --> 03:52:21,661
MOVING ALONG WE HAVE NEXT TALK 

4285
03:52:21,661 --> 03:52:28,434
IS FROM DR. VIVIEN SHEEHAN 

4286
03:52:28,434 --> 03:52:32,505
IMPACT OF OSIVELOTOR ON BONE 

4287
03:52:32,505 --> 03:52:35,174
MARROW AND STEM CELLS IN SICKLE 

4288
03:52:35,174 --> 03:52:36,743
CELL MOUSE MODEL.

4289
03:52:36,743 --> 03:52:40,680
>> THANK YOU FOR ALLOWING
ME TO 

4290
03:52:40,680 --> 03:52:40,914
PRESENT.

4291
03:52:40,914 --> 03:52:43,783
MY APOLOGIES I CAN'T BE IN 

4292
03:52:43,783 --> 03:52:44,017
PERSON.

4293
03:52:44,017 --> 03:52:45,652
I'M IN A HOTEL ROOM AND IT'S 

4294
03:52:45,652 --> 03:52:46,486
BEEN A WONDERFUL MEETING AND 

4295
03:52:46,486 --> 03:52:48,821
I'VE LEARNED A LOT.

4296
03:52:48,821 --> 03:52:54,928
SO I THINK MANY OF US ARE 

4297
03:52:54,928 --> 03:53:00,333
FAMILIAR WITH OSIVELOTOR AND THE

4298
03:53:00,333 --> 03:53:03,536
SECOND GENERATION GBT 601 WE'LL 

4299
03:53:03,536 --> 03:53:08,107
CALL 601 AND THE ABILITY TO 

4300
03:53:08,107 --> 03:53:12,845
INCREASE THE OXYGEN AFFINITY 

4301
03:53:12,845 --> 03:53:15,748
STABILIZING THE HEMOGLOBIN AND 

4302
03:53:15,748 --> 03:53:26,225
THE OXYGENATED CONFIRMATION.

4303
03:53:31,864 --> 03:53:38,204
WHEN OSIVELOTOR BECAME AVAILABLE

4304
03:53:38,204 --> 03:53:40,173
THERE WAS A CONCERN OF HAVING 

4305
03:53:40,173 --> 03:53:42,008
NEGATIVE EFFECTS ON THE VIROLOGY

4306
03:53:42,008 --> 03:53:43,009
OF BLOOD.

4307
03:53:43,009 --> 03:53:44,944
THAT'S WHEN I FIRST BECAME 

4308
03:53:44,944 --> 03:53:46,746
INVOLVED IN THIS TYPE OF WORK 

4309
03:53:46,746 --> 03:53:53,319
FEEDING THESE COMPOUNDING TO THE

4310
03:53:53,319 --> 03:53:54,320
SICKLE MOUSE MODEL.

4311
03:53:54,320 --> 03:53:56,956
THIS LED TO FUTURE WORK I'LL BE 

4312
03:53:56,956 --> 03:53:57,457
PRESENTING.

4313
03:53:57,457 --> 03:54:00,526
IN THIS EXPERIMENT WE GAVE DRUG 

4314
03:54:00,526 --> 03:54:06,399
CONTAINING CHOW AND STANDARD 

4315
03:54:06,399 --> 03:54:11,604
CHOW TO A COHORT AND HAD A 

4316
03:54:11,604 --> 03:54:12,572
COMPARATOR FOR SPECIFIC ASSAYS.

4317
03:54:12,572 --> 03:54:15,708
WE LOOKED AMOUNT THE EFFECT OF 

4318
03:54:15,708 --> 03:54:20,747
DRUG CHOW COMPARED TO STANDARD 

4319
03:54:20,747 --> 03:54:31,290
THE CBC USING EXOCYTOMETRY AND 

4320
03:54:32,592 --> 03:54:36,529
IMAGED THE BLOOD FLOW AND LOOKED

4321
03:54:36,529 --> 03:54:43,836
AT RETICULOCYTE COUNT.

4322
03:54:43,836 --> 03:54:49,942
IT'S PROBABLY NO SURPRISE THAT 

4323
03:54:49,942 --> 03:54:52,345
GBT 601 INCREASES HEMOGLOBIN.

4324
03:54:52,345 --> 03:54:55,281
IT'S USED TWO DOSES IN MANY 

4325
03:54:55,281 --> 03:55:00,753
ASSAYS, .2% AND .4% OF NOTE THE 

4326
03:55:00,753 --> 03:55:05,892
CLINICAL TRIAL USES THE HIGHER 

4327
03:55:05,892 --> 03:55:10,696
DOSE OF .4%.

4328
03:55:10,696 --> 03:55:13,132
AND THERE'S A HEMOGLOBINOPATHY 

4329
03:55:13,132 --> 03:55:19,072
TO NORMALIZING WITH THE .4% AND 

4330
03:55:19,072 --> 03:55:20,873
REDUCTION IN RETIC COUNT WHICH 

4331
03:55:20,873 --> 03:55:21,841
DID NOT ACHIEVE STATISTICAL 

4332
03:55:21,841 --> 03:55:23,643
SIGNIFICANCE.

4333
03:55:23,643 --> 03:55:27,046
NEXT WE WRAVENTED TO LOOK AT THE

4334
03:55:27,046 --> 03:55:30,716
 -- WANTED TO LOOK AT THE IMPACT

4335
03:55:30,716 --> 03:55:34,220
OF RED CELL DEFORMITY AND 

4336
03:55:34,220 --> 03:55:44,730
POLYMERIZE AND UNDER HYPOXIA.

4337
03:55:48,434 --> 03:55:54,841
AND WHAT USES EXOCYTOMETRY AND 

4338
03:55:54,841 --> 03:55:57,310
YOU PUT THIS IN THE SOLUTION AND

4339
03:55:57,310 --> 03:56:03,749
IT'S SUBJECTED TO HYPOXIA AND 

4340
03:56:03,749 --> 03:56:08,020
THE SHAPE IS ANALYZED USING THE 

4341
03:56:08,020 --> 03:56:08,788
LASER TO DETERMINE IF IT'S 

4342
03:56:08,788 --> 03:56:12,191
SMOOTH OR MORE ANGLED WHEN 

4343
03:56:12,191 --> 03:56:12,625
OXY

4344
03:56:12,625 --> 03:56:19,765
OXYGENATED OR MORE RIGID WITH 

4345
03:56:19,765 --> 03:56:21,767
THE DEOXYGENATED.

4346
03:56:21,767 --> 03:56:27,173
601 IMPROVED THE RED CELL 

4347
03:56:27,173 --> 03:56:28,708
DEFORMABILITY AND TOLERANCE.

4348
03:56:28,708 --> 03:56:31,677
THE RED CELL WAS LESS LIKELY TO 

4349
03:56:31,677 --> 03:56:35,681
SICKLE INDICATING THE 

4350
03:56:35,681 --> 03:56:39,752
DEPOLYMERIZATION OF THE MICE 

4351
03:56:39,752 --> 03:56:44,991
TREATED WITH DRUG.

4352
03:56:44,991 --> 03:56:48,861
WE SAW THE RED CELL FLEXIBILITY 

4353
03:56:48,861 --> 03:56:51,664
AND THE POINT OF SICKLING.

4354
03:56:51,664 --> 03:56:54,901
THE RED CELL WAS ABLE TO WITH 

4355
03:56:54,901 --> 03:56:56,169
STAND SICKLING AT LOWER OXYGEN 

4356
03:56:56,169 --> 03:57:06,712
LEVELS IN MICE TREATED WITH 601.

4357
03:57:14,987 --> 03:57:16,389
THE HEMOGLOBIN WAS REFERRED TO 

4358
03:57:16,389 --> 03:57:22,662
THE ON DRUG NATIONAL STATE AND 

4359
03:57:22,662 --> 03:57:26,165
POTENTIALLY HAVE HYPER VISCOSITY

4360
03:57:26,165 --> 03:57:31,804
EFFECT AND WE MET THE MICE WITH 

4361
03:57:31,804 --> 03:57:36,409
THE GBT CHOW FLUID UP TO DAY 

4362
03:57:36,409 --> 03:57:38,945
FIVE AND COMPARED IT TO THE MICE

4363
03:57:38,945 --> 03:57:44,116
WITH CONTROL CHOW.

4364
03:57:44,116 --> 03:57:54,627
YOU CAN SEE A FACT EFFECT AND 

4365
03:57:55,695 --> 03:57:58,231
DISSIPATED WHEN THE CHOW WAS 

4366
03:57:58,231 --> 03:57:58,497
WITHDRAWN.

4367
03:57:58,497 --> 03:58:01,234
YOU CAN SEE BY DAY THREE THE 

4368
03:58:01,234 --> 03:58:02,168
HYPOXIA RETURNED BACK TO CONTROL

4369
03:58:02,168 --> 03:58:12,712
LEVELS AS IF IT WAS NEVER THERE.

4370
03:58:15,848 --> 03:58:19,385
THE EI BENEFITS WERE MAINTAINED 

4371
03:58:19,385 --> 03:58:21,354
AND PRESENT THOUGH NOT 

4372
03:58:21,354 --> 03:58:23,155
STATISTICALLY SIGNIFICANT BY DAY

4373
03:58:23,155 --> 03:58:23,689
FIVE.

4374
03:58:23,689 --> 03:58:26,726
THIS LED US TO CONSIDER WHAT IS 

4375
03:58:26,726 --> 03:58:31,564
THIS DOING IMPROVING THE 

4376
03:58:31,564 --> 03:58:33,566
NORMOXIC RED CELL SINCE WHAT THE

4377
03:58:33,566 --> 03:58:36,569
DRUG DOES IS ENCOURAGE THE RED 

4378
03:58:36,569 --> 03:58:43,542
CELL TO STAY IN ITS NORMOXIC 

4379
03:58:43,542 --> 03:58:43,876
CONFIRMATION.

4380
03:58:43,876 --> 03:58:46,512
I CAN'T SEE THIS EFFECT WHEN I 

4381
03:58:46,512 --> 03:58:49,482
FED THE MICE WITH DRUG CHOW FOR 

4382
03:58:49,482 --> 03:58:51,751
TWO WEEKS OR REQUIRED A MORE 

4383
03:58:51,751 --> 03:58:52,418
PROLONGED TREATMENT OF SIX WEEKS

4384
03:58:52,418 --> 03:59:02,928
TO GET THE IMPROVEMENT IN THE 

4385
03:59:03,829 --> 03:59:09,101
NORMOXIC RED CELL AND HAD A 

4386
03:59:09,101 --> 03:59:15,775
REDUCTION IN V CAM AND AND WE 

4387
03:59:15,775 --> 03:59:18,411
SAW IMPROVEMENT IN THE BONE 

4388
03:59:18,411 --> 03:59:20,112
MARROW CELLULARITY IN THE BONE 

4389
03:59:20,112 --> 03:59:20,713
MARROW.

4390
03:59:20,713 --> 03:59:24,817
WE'RE LOOKING AT THE POSITIVITY 

4391
03:59:24,817 --> 03:59:27,386
WHICH IS A MARKER OF THE 

4392
03:59:27,386 --> 03:59:28,788
APOPTOSIS AND WE SEE A REDUCTION

4393
03:59:28,788 --> 03:59:39,098
IN THAT WITH DRUG.

4394
03:59:44,804 --> 03:59:46,839
AND REDUCTION OF STRESS AND THE 

4395
03:59:46,839 --> 03:59:55,781
MOUSE USES THE SPLEEN AS A SITE 

4396
03:59:55,781 --> 04:00:04,523
OF ERYTHROPHERESIS AND WE SAW 

4397
04:00:04,523 --> 04:00:11,764
MATURATION WITH DRUG CHOW.

4398
04:00:11,764 --> 04:00:15,067
AND REDUCTION OF APOPTOSIS OF 

4399
04:00:15,067 --> 04:00:25,077
THE BLAST AND RETICK  -- THE 

4400
04:00:25,077 --> 04:00:25,277
SITES.

4401
04:00:25,277 --> 04:00:26,812
THE BEST PICTURE IS MISSING AND 

4402
04:00:26,812 --> 04:00:30,916
I DON'T KNOW WHY.

4403
04:00:30,916 --> 04:00:34,453
WE HYPOTHESIZED THE LONG-TERM 

4404
04:00:34,453 --> 04:00:36,856
BENEFIT THE IMPROVEMENT IN THE 

4405
04:00:36,856 --> 04:00:39,125
NORMOXIC RED CELL WAS DUE TO AN 

4406
04:00:39,125 --> 04:00:43,696
IMPROVEMENT IN THE BONE MARROW 

4407
04:00:43,696 --> 04:00:48,834
AND LOOKED TO SEE WHETHER THE 

4408
04:00:48,834 --> 04:00:53,506
STROMA SEEN IN THE MOUSE BONE 

4409
04:00:53,506 --> 04:00:55,674
MARROW COULD BE IMPROVED BY 

4410
04:00:55,674 --> 04:00:57,810
TREATMENT WITH 601.

4411
04:00:57,810 --> 04:00:59,779
YOU'LL HAVE TO TAKE MY WORD FOR 

4412
04:00:59,779 --> 04:01:03,849
IT WE SAW NORMALIZATION OF THE 

4413
04:01:03,849 --> 04:01:05,951
TORTURED BLOOD VESSELS OF THE 

4414
04:01:05,951 --> 04:01:08,220
BONE MARROW AND NORMALIZATION OF

4415
04:01:08,220 --> 04:01:14,593
THE DISORDERED STROMA.

4416
04:01:14,593 --> 04:01:18,731
IT QUANTIFIED IN THE PANEL AND 

4417
04:01:18,731 --> 04:01:21,834
MADE IT'S WAY THROUGH AND 

4418
04:01:21,834 --> 04:01:24,837
THERE'S NO STATISTICAL 

4419
04:01:24,837 --> 04:01:28,441
DIFFERENCE BETWEEN STROMA OF THE

4420
04:01:28,441 --> 04:01:34,079
A  A MOUSE COMPARED TO THE 601 

4421
04:01:34,079 --> 04:01:35,948
AND LOWER DOSE THAN IN THE 

4422
04:01:35,948 --> 04:01:46,392
CLINICAL TRIALS CURRENTLY.

4423
04:01:51,630 --> 04:01:56,335
YOU CAN SEE THE MARK OF THE 

4424
04:01:56,335 --> 04:02:01,373
BLOOD VESSELS AND AS THEY BEEN 

4425
04:02:01,373 --> 04:02:02,675
LUNARIZATION OF THE BLOOD 

4426
04:02:02,675 --> 04:02:04,076
VESSELS VERSUS THE CONTROL CHOW.

4427
04:02:04,076 --> 04:02:05,978
SEE THE SAME WITH THE 

4428
04:02:05,978 --> 04:02:11,116
NORMALIZATION OF THE STROMA AS 

4429
04:02:11,116 --> 04:02:15,654
MARK BY THE END.

4430
04:02:15,654 --> 04:02:23,996
SO WE CONCLUDE 601 INCREASES 

4431
04:02:23,996 --> 04:02:26,098
HEMOGLOBIN AND AS THE CORRELATE 

4432
04:02:26,098 --> 04:02:30,102
WITH IMPROVEMENT IN THE BONE 

4433
04:02:30,102 --> 04:02:31,770
MARROW ENVIRONMENT AND WE WERE 

4434
04:02:31,770 --> 04:02:34,173
HAPPY TO SEE THIS NORMALIZATION 

4435
04:02:34,173 --> 04:02:36,208
OF THE PATHOLOGIC ANGIOGENESIS 

4436
04:02:36,208 --> 04:02:37,877
IMPROVEMENT IN THE STROMA AND 

4437
04:02:37,877 --> 04:02:40,346
THE CHANGES ARE TYPICALLY 

4438
04:02:40,346 --> 04:02:42,548
ASSOCIATED WITH IMPROVED HSC 

4439
04:02:42,548 --> 04:02:46,252
HEALTH AND THAT WORK IS ONGOING.

4440
04:02:46,252 --> 04:02:51,924
SO THIS IS A TIMELY FINDING AS 

4441
04:02:51,924 --> 04:02:53,759
FOLKS HEARD WE HAD A WONDERFUL 

4442
04:02:53,759 --> 04:02:57,096
TALK THE FIRST DAY OF THE 

4443
04:02:57,096 --> 04:02:59,565
MEETING FROM DR. MARIN TALKING 

4444
04:02:59,565 --> 04:03:03,802
ABOUT THE NEED TO IMPROVE OUR 

4445
04:03:03,802 --> 04:03:05,738
CONTROL OF SICKLE CELL LEADING 

4446
04:03:05,738 --> 04:03:08,841
UP TO MOBILIZATION FOR GENE 

4447
04:03:08,841 --> 04:03:09,074
THERAPY.

4448
04:03:09,074 --> 04:03:11,377
WHAT I WANT TO PROPOSE IS A YEAR

4449
04:03:11,377 --> 04:03:14,480
LONG COURSE OF 601 PRIOR TO 

4450
04:03:14,480 --> 04:03:16,415
GENE-BASED THERAPY TO IMPROVE 

4451
04:03:16,415 --> 04:03:19,652
HSC HELP AND IMPROVE OUR ABILITY

4452
04:03:19,652 --> 04:03:21,720
TO MOBILIZE STEM CELLS AND 

4453
04:03:21,720 --> 04:03:23,255
HOMING WILL IMPROVE THE 

4454
04:03:23,255 --> 04:03:24,490
STRUCTURE OF THE BONE MARROW.

4455
04:03:24,490 --> 04:03:26,926
AS WE ATTEMPT TO CONVERT OUR 

4456
04:03:26,926 --> 04:03:33,666
DATA FROM MOUSE TO HUMAN A YEAR 

4457
04:03:33,666 --> 04:03:38,771
SEEMS TO BE SUFFICIENT AND THIS 

4458
04:03:38,771 --> 04:03:41,774
COULD REPLACE THE LEAD UP TO 

4459
04:03:41,774 --> 04:03:43,776
GENE THERAPY WHICH IS TIME 

4460
04:03:43,776 --> 04:03:45,311
CONSUMING WHILE WE WAIT FOR 

4461
04:03:45,311 --> 04:03:46,211
APPROVAL AND ASSESSMENT OF THE 

4462
04:03:46,211 --> 04:03:50,449
PATIENT RATHER THAN HAVING THEM 

4463
04:03:50,449 --> 04:03:53,319
BE TRANSFUSED AND HAVE AN ORAL 

4464
04:03:53,319 --> 04:03:58,057
THERAPY WHICH COULD BE A GAME 

4465
04:03:58,057 --> 04:03:59,525
CHANGER WITH THOSE DIFFICULT TO 

4466
04:03:59,525 --> 04:04:03,796
MATCH BLOOD UNITS FOR.

4467
04:04:03,796 --> 04:04:08,467
HAPPY TO TAKE ANY QUESTIONS.

4468
04:04:08,467 --> 04:04:11,003
I WANT TO THANK MY WONDERFUL LAB

4469
04:04:11,003 --> 04:04:14,807
AT EMORY AND COLLABORATIONS THAT

4470
04:04:14,807 --> 04:04:21,313
TAUGHT ME ABOUT LORCA AND MY 

4471
04:04:21,313 --> 04:04:21,914
COLLABORATORS AT GEORGIA TECH 

4472
04:04:21,914 --> 04:04:31,724
AND FUNDING SOURCES.

4473
04:04:31,724 --> 04:04:34,860
QUESTIONS FROM THE AUDIENCE?

4474
04:04:34,860 --> 04:04:35,761
ANYTHING ONLINE?

4475
04:04:35,761 --> 04:04:40,866
>> I THINK IN HER
PRESENTATION 

4476
04:04:40,866 --> 04:04:43,869
THE QUESTIONS WERE ANSWERED.

4477
04:04:43,869 --> 04:04:45,871
>> THAT'S EFFICIENT.

4478
04:04:45,871 --> 04:04:47,473
SO I THINK WE'RE SUPPOSED TO 

4479
04:04:47,473 --> 04:04:51,477
TAKE A BREAK NOW BUT I THINK 

4480
04:04:51,477 --> 04:04:56,548
GIVEN THE LATENESS OF THE DAY AT

4481
04:04:56,548 --> 04:05:01,720
THIS POINT AND WE HAVE JUST ONE 

4482
04:05:01,720 --> 04:05:11,730
MORE SESSION SO I'M HOPING AND 

4483
04:05:11,730 --> 04:05:13,766
IS JULIE ONLINE WOULD YOU MIND 

4484
04:05:13,766 --> 04:05:16,635
TAKING US ACROSS THE FINISH 

4485
04:05:16,635 --> 04:05:16,835
LINE?

4486
04:05:16,835 --> 04:05:17,302
>> WILL DO.

4487
04:05:17,302 --> 04:05:20,539
>> SO WE'LL HAVE IT FINAL
TALK 

4488
04:05:20,539 --> 04:05:21,674
AND SCRIPT THE BREAK.

4489
04:05:21,674 --> 04:05:23,676
IF ANYBODY WANTS TO GET UP FOR A

4490
04:05:23,676 --> 04:05:25,177
BIO BREAK, PLEASE DO.

4491
04:05:25,177 --> 04:05:27,212
THIS IS GOING TO BE THE UPDATES 

4492
04:05:27,212 --> 04:05:30,683
ON NATIONAL ALLIANCE OF SICKLE 

4493
04:05:30,683 --> 04:05:33,318
CELL CENTERS INCLUDING CONSENSUS

4494
04:05:33,318 --> 04:05:35,788
RECOMMENDATION AND JULIE KANTER 

4495
04:05:35,788 --> 04:05:43,128
AND HER GROUP WILL BE PRESENTING

4496
04:05:43,128 --> 04:05:43,595
MULTIPLE PRESENTATION.

4497
04:05:43,595 --> 04:05:47,766
>> YOU  THANK YOU FOR THE 

4498
04:05:47,766 --> 04:05:49,268
OPPORTUNITY TO PRESENT.

4499
04:05:49,268 --> 04:05:59,778
SORRY I'M NOT THERE IN PERSON.

4500
04:06:00,546 --> 04:06:02,481
AND WHY WE STARTED THE NATIONAL 

4501
04:06:02,481 --> 04:06:03,782
ALLIANCE OF SICKLE CELL CENTERS 

4502
04:06:03,782 --> 04:06:05,084
IN 2020 AND TALK WHERE WE ARE 

4503
04:06:05,084 --> 04:06:07,753
NOW AND WHERE THE FUTURE IS 

4504
04:06:07,753 --> 04:06:09,388
GOING AND IF ANYONE HASN'T YET 

4505
04:06:09,388 --> 04:06:10,556
JOINED IN THE FUN WE WANT TO 

4506
04:06:10,556 --> 04:06:15,027
INVITE YOU TO BECOME A MEMBER.

4507
04:06:15,027 --> 04:06:16,628
WE STARTED A NATIONAL ALLIANCE 

4508
04:06:16,628 --> 04:06:18,564
IN 2020 AND NOTHING WAS GOING 

4509
04:06:18,564 --> 04:06:24,403
ON, WE WERE ALL PANDEMIC AND 

4510
04:06:24,403 --> 04:06:25,771
REALIZED THERE WASN'T AN 

4511
04:06:25,771 --> 04:06:30,743
ORGANIZATION DEDICATED TO 

4512
04:06:30,743 --> 04:06:32,745
PROVIDERS AND NOT JUST PHYSICIAN

4513
04:06:32,745 --> 04:06:35,748
AND RESEARCHERS BUT NURSES, CARE

4514
04:06:35,748 --> 04:06:39,485
COORDINATORS.

4515
04:06:39,485 --> 04:06:43,055
EVERYTHING WE NEED TO MAKE IT 

4516
04:06:43,055 --> 04:06:44,289
BETTER FOR SICKLE CELL AND DON'T

4517
04:06:44,289 --> 04:06:47,493
HAVE THE OPPORTUNITY TO ENGAGE 

4518
04:06:47,493 --> 04:06:51,663
TEAMS AND WE WANTED TO WORK ON A

4519
04:06:51,663 --> 04:06:54,533
WAY TO IMPROVE CARE OF SICKLE 

4520
04:06:54,533 --> 04:06:55,667
CELL DISEASE AND FOCUS ON 

4521
04:06:55,667 --> 04:06:58,370
CLINICAL AND QUALITY OF CAIRO 

4522
04:06:58,370 --> 04:07:04,510
OPPOSED TO NOVEL THERAPEUTICS.

4523
04:07:04,510 --> 04:07:09,715
AND PROVIDE A FINANCIAL MODEL 

4524
04:07:09,715 --> 04:07:19,124
FOR AFFILIATES AND WANTED TO 

4525
04:07:19,124 --> 04:07:19,725
BUILD A COMMUNITY TO SUPPORT 

4526
04:07:19,725 --> 04:07:27,432
SUSTAINABILITY.

4527
04:07:27,432 --> 04:07:28,801
WE ALSO RECOGNIZED WHERE WE 

4528
04:07:28,801 --> 04:07:30,302
DON'T HAVE DATA AND THERE ARE SO

4529
04:07:30,302 --> 04:07:33,005
MANY PLACES WE DON'T HAVE DATA.

4530
04:07:33,005 --> 04:07:34,439
THERE'S MANY ELEMENTS OF 

4531
04:07:34,439 --> 04:07:35,207
STANDARD OF CARE THAT HAVEN'T 

4532
04:07:35,207 --> 04:07:39,912
BEEN VALIDATED OR PROVEN ON THE 

4533
04:07:39,912 --> 04:07:43,315
POPULATION LEVEL.

4534
04:07:43,315 --> 04:07:44,716
THERE'S HUGE VARIATION IN 

4535
04:07:44,716 --> 04:07:46,118
PROCESS AND IT SEEMS ANECDOTE 

4536
04:07:46,118 --> 04:07:53,592
AND OPINION HAVE BEEN TRANSLATED

4537
04:07:53,592 --> 04:07:54,960
AND SOMETHING LIKE SICKLE STROKE

4538
04:07:54,960 --> 04:07:57,362
SCREENING THERE'S A HUGE GAP IN 

4539
04:07:57,362 --> 04:07:58,230
CARE DELIVERY.

4540
04:07:58,230 --> 04:08:02,100
WHILE THERE'S BEEN WORK DONE ON 

4541
04:08:02,100 --> 04:08:04,736
IMPROVING THE GAP THERE'S WAY TO

4542
04:08:04,736 --> 04:08:06,738
GO AND POLITICAL BOUNDARIES THAT

4543
04:08:06,738 --> 04:08:09,241
HAVE HAMPERED SUCCESS AND THE 

4544
04:08:09,241 --> 04:08:10,509
NUMBER OF REGISTRIES THAT HAVE 

4545
04:08:10,509 --> 04:08:12,845
COME AND GONE AND AMAZING GRANTS

4546
04:08:12,845 --> 04:08:14,213
THAT HAVE COME AND GONE WHERE 

4547
04:08:14,213 --> 04:08:17,115
THE DATA AND KNOWLEDGE GETS LOST

4548
04:08:17,115 --> 04:08:19,651
BECAUSE IT'S NOT KEPT IN A 

4549
04:08:19,651 --> 04:08:21,920
CONTINUED SPACE AND NEED TO MOVE

4550
04:08:21,920 --> 04:08:32,364
FORWARD WORKING TOGETHER.

4551
04:08:36,902 --> 04:08:38,503
IT DOESN'T STOP WITH GENE 

4552
04:08:38,503 --> 04:08:40,239
THERAPY IN FACT IT SHOULD IGNITE

4553
04:08:40,239 --> 04:08:42,040
MORE AND WE HAVE A LONG TIME 

4554
04:08:42,040 --> 04:08:44,409
BEFORE IT GETS TO GENE THERAPY 

4555
04:08:44,409 --> 04:08:47,779
AND INDIVIDUALS WHO MAY NOT WANT

4556
04:08:47,779 --> 04:08:49,848
GENE THERAPY AND DEVELOPING IS 

4557
04:08:49,848 --> 04:08:50,449
NOT ENOUGH.

4558
04:08:50,449 --> 04:08:52,384
WE NEED TO MAKE SURE THEY GET TO

4559
04:08:52,384 --> 04:08:52,584
CARE.

4560
04:08:52,584 --> 04:08:55,787
OUR PRIMARY GOAL IS TO ENSURE 

4561
04:08:55,787 --> 04:08:57,189
AND IMPROVE ACCESS TO A SICKLE 

4562
04:08:57,189 --> 04:08:58,590
CELL DISEASE SPECIALIST AND HOW 

4563
04:08:58,590 --> 04:08:59,791
IT SHOULD BE A GOAL.

4564
04:08:59,791 --> 04:09:01,994
WE KNOW THE SYSTEM OF CARE IS 

4565
04:09:01,994 --> 04:09:02,995
BROKEN ESPECIALLY IN THE UNITED 

4566
04:09:02,995 --> 04:09:03,462
STATES.

4567
04:09:03,462 --> 04:09:05,163
WE ALSO KNOW THERE ARE THINGS WE

4568
04:09:05,163 --> 04:09:07,299
AS SPECIALISTS DON'T AGREE ON.

4569
04:09:07,299 --> 04:09:11,770
MY FAVORITE EXAMPLE IS HOW OFTEN

4570
04:09:11,770 --> 04:09:19,778
AN ECHO CARDIO GRAM BE DONE AND 

4571
04:09:19,778 --> 04:09:21,480
I'VE SEEN FISTICUFFS EMERGE FROM

4572
04:09:21,480 --> 04:09:23,515
THAT AND WE CAN ANSWER QUESTIONS

4573
04:09:23,515 --> 04:09:25,117
EFFECTIVELY AND OUTCOMES HAVE TO

4574
04:09:25,117 --> 04:09:26,251
BE THE RESULT OF THE SYSTEM OF 

4575
04:09:26,251 --> 04:09:28,487
CARE AND NOT JUST INDIVIDUAL.

4576
04:09:28,487 --> 04:09:29,454
WE WANT TO WORK TOGETHER TO 

4577
04:09:29,454 --> 04:09:38,931
IMPROVE OUTCOMES.

4578
04:09:38,931 --> 04:09:41,500
WE HAVE ABOUT 98 SICKLE CELL 

4579
04:09:41,500 --> 04:09:46,538
DISEASE CENTERS AND WE 

4580
04:09:46,538 --> 04:09:48,540
OVERLAPPED AND THERE'S MANY IN 

4581
04:09:48,540 --> 04:09:50,509
THE UNITED STATES AND YES WE 

4582
04:09:50,509 --> 04:09:51,510
WANT TO GO TO CANADA TOO AND 

4583
04:09:51,510 --> 04:09:52,511
THERE'S A PLAN FOR THAT.

4584
04:09:52,511 --> 04:09:55,981
IN THE MEANTIME I WANT TO SAY 

4585
04:09:55,981 --> 04:09:57,482
THERE ARE MANY SICKLE CELL 

4586
04:09:57,482 --> 04:10:00,519
CENTERS AND WE NEED TO HARNESS 

4587
04:10:00,519 --> 04:10:03,889
WHAT WE'RE DOING AND WORK 

4588
04:10:03,889 --> 04:10:10,295
FURTHER TOGETHER.

4589
04:10:10,295 --> 04:10:12,164
AND WE SAID WE'RE GOING TO 

4590
04:10:12,164 --> 04:10:12,497
DEFINE THAT.

4591
04:10:12,497 --> 04:10:13,598
WE DID TWO STUDIES.

4592
04:10:13,598 --> 04:10:18,670
ONE FOR ADULTS AND ONE FOR 

4593
04:10:18,670 --> 04:10:19,771
CENTER REQUIREMENTS.

4594
04:10:19,771 --> 04:10:21,506
AND MANY PEOPLE KNOW THERE ARE A

4595
04:10:21,506 --> 04:10:23,475
LOT OF HOSPITALS AND ACADEMIC 

4596
04:10:23,475 --> 04:10:25,544
CENTERS UNWILLING TO INVESTIGATE

4597
04:10:25,544 --> 04:10:30,916
IN THE CARE OF PEOPLE WITH 

4598
04:10:30,916 --> 04:10:31,350
SICKLE CELL DISEASE.

4599
04:10:31,350 --> 04:10:32,818
TO BE PART OF THE ALLIANCE IS 

4600
04:10:32,818 --> 04:10:34,686
SOMETHING YOU COULD TAKE TO YOUR

4601
04:10:34,686 --> 04:10:36,688
CEO AND SAY HERE'S WHAT WE NEED 

4602
04:10:36,688 --> 04:10:42,761
TO DO TO BECOME A MEMBER OF THIS

4603
04:10:42,761 --> 04:10:44,763
GROUP AND LOOK AT DATA DISCOVERY

4604
04:10:44,763 --> 04:10:46,765
AND WE TALKED ABOUT IT AND IT 

4605
04:10:46,765 --> 04:10:48,066
INCLUDES 4,000 INDIVIDUALS AND 

4606
04:10:48,066 --> 04:10:58,510
THEY HAVE FULL PHENOTYPES.

4607
04:11:00,846 --> 04:11:03,982
WE VOTED ON RECOMMENDATIONS AND 

4608
04:11:03,982 --> 04:11:07,085
WE HELD THE THIRD ANNUAL SICKLE 

4609
04:11:07,085 --> 04:11:08,920
CELL CENTERS MEETING AND HAD 

4610
04:11:08,920 --> 04:11:14,926
OVER 200 PEOPLE FROM OVER 150 

4611
04:11:14,926 --> 04:11:17,763
DIFFERENT INSTITUTIONS THE 

4612
04:11:17,763 --> 04:11:19,264
MAJORITY OF WHICH WERE SICKLE 

4613
04:11:19,264 --> 04:11:21,133
CELL CENTERS SO WE WERE EXCITED.

4614
04:11:21,133 --> 04:11:23,301
IN DEVELOPING RECOMMENDATIONS 

4615
04:11:23,301 --> 04:11:25,103
WITH DEFINED TWO LEVELS.

4616
04:11:25,103 --> 04:11:29,641
ONE MET STANDARD.

4617
04:11:29,641 --> 04:11:33,178
WHAT PROVIDERS MUST DO TO ENSURE

4618
04:11:33,178 --> 04:11:34,846
SAFE AND ADEQUATE CARE AND WE 

4619
04:11:34,846 --> 04:11:36,214
KNOW THESE THINGS ARE 

4620
04:11:36,214 --> 04:11:36,515
BENEFICIAL.

4621
04:11:36,515 --> 04:11:38,517
SUCH AS THE IMPORTANCE OF GOING 

4622
04:11:38,517 --> 04:11:42,054
TO THE DENTIST TWICE A YEAR FOR 

4623
04:11:42,054 --> 04:11:42,888
ANNUAL CLEANINGS.

4624
04:11:42,888 --> 04:11:45,424
WITH KNOW PATIENTS NEED TO DO 

4625
04:11:45,424 --> 04:11:48,393
THAT AND THERE'S LIMITATIONS AND

4626
04:11:48,393 --> 04:11:49,861
OTHER PROBLEMS.

4627
04:11:49,861 --> 04:11:51,763
WE CAN'T HOLD THAT AS A STANDARD

4628
04:11:51,763 --> 04:11:58,036
OF CARE.

4629
04:11:58,036 --> 04:12:03,775
AND THERE'S A SERIES OF 

4630
04:12:03,775 --> 04:12:05,444
ITERATIVE SURVEYS AND COMPROMISE

4631
04:12:05,444 --> 04:12:07,045
AND THEN LEAD TO A VOTE WHERE 

4632
04:12:07,045 --> 04:12:09,548
ALL CENTERS GET ONE VOTE LEADING

4633
04:12:09,548 --> 04:12:10,849
TO RECOMMENDATIONS WHERE IT HAS 

4634
04:12:10,849 --> 04:12:11,917
TO BE OVER 70% TO BE CONSIDERED 

4635
04:12:11,917 --> 04:12:20,225
A RECOMMENDATION.

4636
04:12:20,225 --> 04:12:22,994
WE'VE DEVELOPED PEDIATRIC AND 

4637
04:12:22,994 --> 04:12:25,030
ADULT RECOMMENDATIONS TO UNDER 

4638
04:12:25,030 --> 04:12:26,998
GO PEER REVIEW AND WE HAVE THE 

4639
04:12:26,998 --> 04:12:29,034
TABLES OF THE RECOMMENDATIONS ON

4640
04:12:29,034 --> 04:12:30,068
THE WEBSITE.

4641
04:12:30,068 --> 04:12:32,337
YOU CAN PULL THAT UP AND 

4642
04:12:32,337 --> 04:12:37,976
BASICALLY SAY WHAT DOES A 

4643
04:12:37,976 --> 04:12:40,178
2-YEAR-OLD NEED OR 15-YEAR-OLD 

4644
04:12:40,178 --> 04:12:42,881
OR 55-YEAR-OLD NEED?

4645
04:12:42,881 --> 04:12:44,216
WE TALKED ABOUT RECOMMENDATIONS 

4646
04:12:44,216 --> 04:12:47,052
AND THOSE WILL BE ON THE WEBSITE

4647
04:12:47,052 --> 04:12:51,223
BY THE END OF THIS WEEK AND 

4648
04:12:51,223 --> 04:12:53,492
DEFINED TRANSITION IN SICKLE 

4649
04:12:53,492 --> 04:12:53,825
CELL DISEASE.

4650
04:12:53,825 --> 04:13:00,232
AND DR. GAURINO WILL TALK ABOUT 

4651
04:13:00,232 --> 04:13:04,069
THAT AND PLANS SIMILAR TO WHAT 

4652
04:13:04,069 --> 04:13:09,641
DR. TANABE DESCRIBED AND A 

4653
04:13:09,641 --> 04:13:15,647
SOCIAL WORKER.

4654
04:13:15,647 --> 04:13:18,016
LET'S TALK ABOUT GRAN DAD AND 

4655
04:13:18,016 --> 04:13:20,385
IT'S A PROSPECTIVE HIGH QUALITY 

4656
04:13:20,385 --> 04:13:23,421
CURATED DATA SET TO IMPROVE AND 

4657
04:13:23,421 --> 04:13:25,357
GUIDE ADHERENCE TO CARE AND 

4658
04:13:25,357 --> 04:13:27,792
PROVIDE THE PLATFORM FOR QUALITY

4659
04:13:27,792 --> 04:13:28,093
IMPROVEMENT.

4660
04:13:28,093 --> 04:13:30,962
IT ALLOWS FOR REAL TIME 

4661
04:13:30,962 --> 04:13:33,598
INVESTIGATION OF NOVEL THERAPIES

4662
04:13:33,598 --> 04:13:34,966
THOUGH THE MAY HAVE BEEN GOAL IS

4663
04:13:34,966 --> 04:13:37,002
QUALITY IMPROVEMENT AND USE IT 

4664
04:13:37,002 --> 04:13:41,072
AS A REGISTRY AND USING GRAN DAD

4665
04:13:41,072 --> 04:13:45,277
FOR THE ALLIANCE AND FOR THE 

4666
04:13:45,277 --> 04:13:48,547
SICKLE CELL DISEASE TDP PROGRAM 

4667
04:13:48,547 --> 04:13:49,714
DEMONSTRATING HOW ONE CAN BE 

4668
04:13:49,714 --> 04:13:50,982
USED IN DIFFERENT WAYS AND THE 

4669
04:13:50,982 --> 04:13:51,783
DATA WON'T GO AWAY IF THE 

4670
04:13:51,783 --> 04:14:02,093
PROJECT GOES AWAY.

4671
04:14:03,862 --> 04:14:07,766
ALMOST ANYTHING YOU COULD WANT 

4672
04:14:07,766 --> 04:14:14,973
IS WITHIN GRAN DAD.

4673
04:14:14,973 --> 04:14:16,474
SUPPORT IS DEVELOPED BY OUR 

4674
04:14:16,474 --> 04:14:18,210
PROGRAM INITIALLY AND MAKE SURE 

4675
04:14:18,210 --> 04:14:18,810
WE SUSTAIN IT.

4676
04:14:18,810 --> 04:14:21,546
IT TOOK SUPPORT TO MAKE IT PART 

4677
04:14:21,546 --> 04:14:22,681
OF THE ALLIANCE AND CONTINUES TO

4678
04:14:22,681 --> 04:14:29,120
BE A PARTNERSHIP BETWEEN THE TDP

4679
04:14:29,120 --> 04:14:31,790
PROGRAM.

4680
04:14:31,790 --> 04:14:34,593
AND RESOURCES AND TRAINING 

4681
04:14:34,593 --> 04:14:34,826
PROGRAM.

4682
04:14:34,826 --> 04:14:36,561
IT OFFERED TRAINING FOR OUR APPs

4683
04:14:36,561 --> 04:14:39,030
AND NURSE PRACTITIONERS TO 

4684
04:14:39,030 --> 04:14:41,833
BECOME A SPECIALIST IN SICKLE 

4685
04:14:41,833 --> 04:14:43,068
CELL DISEASE AND THEY HAVE 

4686
04:14:43,068 --> 04:14:46,504
SESSIONS DEDICATED FOR AVPs AND 

4687
04:14:46,504 --> 04:14:50,108
HAVE AN OBSERVATION RUBRIC AND 

4688
04:14:50,108 --> 04:14:51,776
HAVE TO DO CASE PRESENTATIONS 

4689
04:14:51,776 --> 04:14:55,180
AND HAVE CHECKPOINT ASSESSMENTS 

4690
04:14:55,180 --> 04:14:58,049
PRE AND POST TEST ASSESSMENTS 

4691
04:14:58,049 --> 04:15:01,186
AND WILL BE AN OFFICIAL APP 

4692
04:15:01,186 --> 04:15:02,053
FELLOWSHIP PROGRAM.

4693
04:15:02,053 --> 04:15:04,889
THIS WILL ALLOW US TO DEVELOP 

4694
04:15:04,889 --> 04:15:06,324
AFFILIATE SITES AND WHAT WE CAN 

4695
04:15:06,324 --> 04:15:10,028
DO FOR PHYSICIANS WHO DON'T 

4696
04:15:10,028 --> 04:15:12,564
BECOME HEMATOLOGISTS BUT WANT TO

4697
04:15:12,564 --> 04:15:14,266
BECOME SICKLE CELL SPECIALIST.

4698
04:15:14,266 --> 04:15:17,435
FINALLY WANT TO TALK ABOUT 

4699
04:15:17,435 --> 04:15:17,869
RECIPE.

4700
04:15:17,869 --> 04:15:20,939
IT'S AN NIH FUNDED GRANT LOOKING

4701
04:15:20,939 --> 04:15:24,576
TO HOW PATIENTS GOT UNAFFILIATED

4702
04:15:24,576 --> 04:15:26,144
FROM SICKLE CELL DISEASE CARE 

4703
04:15:26,144 --> 04:15:27,946
AND WHY ARE SO MANY NOT SEEING 

4704
04:15:27,946 --> 04:15:29,114
SPECIALISTS AN FIND THEM AND 

4705
04:15:29,114 --> 04:15:31,783
RECRUIT THEM AND ENSURE THEY 

4706
04:15:31,783 --> 04:15:38,723
HAVE BETTER OUTCOMES.

4707
04:15:38,723 --> 04:15:40,825
AS WE USE DATA WHEN THE PROJECT 

4708
04:15:40,825 --> 04:15:45,897
IS OVER AND THE PROJECT GOES 

4709
04:15:45,897 --> 04:15:47,766
AWAY, THEN WE'LL BE ABLE TO HAVE

4710
04:15:47,766 --> 04:15:49,701
THE DATA EMBEDDED IN GRAN DAD 

4711
04:15:49,701 --> 04:15:54,506
AND IT WON'T GO AWAY WHEN THE 

4712
04:15:54,506 --> 04:15:56,541
PROJECT GOES AWAY.

4713
04:15:56,541 --> 04:15:57,742
I DON'T KNOW IF MY SLIDES 

4714
04:15:57,742 --> 04:15:58,343
DISAPPEARED FOR EVERYBODY OR 

4715
04:15:58,343 --> 04:16:08,486
JUST ME.

4716
04:16:11,323 --> 04:16:11,990
WE HAVE THE CAPTURE POINT OF 

4717
04:16:11,990 --> 04:16:22,200
TRANSITION.

4718
04:16:26,871 --> 04:16:28,773
WE HOPE TO PROVIDE EDUCATION NOT

4719
04:16:28,773 --> 04:16:32,377
JUST FOR PHYSICIANS BUT ADPs AND

4720
04:16:32,377 --> 04:16:33,845
NURSES AND SOCIAL WORKERS AND 

4721
04:16:33,845 --> 04:16:36,281
HAVE AN ACTIVE GROUP OF SOCIAL 

4722
04:16:36,281 --> 04:16:38,616
WORKERS WORKING TO PUT 

4723
04:16:38,616 --> 04:16:39,250
GUIDELINES TOGETHER.

4724
04:16:39,250 --> 04:16:41,386
WE HAVE OUR 2025 MEETING IN 

4725
04:16:41,386 --> 04:16:43,688
JULY, LOCATION TBD AND MORE 

4726
04:16:43,688 --> 04:16:45,890
CENTERS JOINING AND HAVE OTHER 

4727
04:16:45,890 --> 04:16:47,659
IMPROVED ACCESS TO POLICIES, 

4728
04:16:47,659 --> 04:16:51,863
PROCEDURES AND PROTOCOLS 

4729
04:16:51,863 --> 04:16:55,066
AVAILABLE TO MEMBERS.

4730
04:16:55,066 --> 04:17:00,572
WE HAVE OTHER RECOMMENDATIONS IN

4731
04:17:00,572 --> 04:17:01,906
PROJECT.

4732
04:17:01,906 --> 04:17:05,844
HOW TO TREAT IRON OVERLOAD AND 

4733
04:17:05,844 --> 04:17:09,848
RECOMMENDATIONS ARE ALMOST 100% 

4734
04:17:09,848 --> 04:17:11,216
COMPLETE AND EMPHASIS ON WHEN 

4735
04:17:11,216 --> 04:17:12,217
SOMEONE SHOULD BE TRANSFERRED TO

4736
04:17:12,217 --> 04:17:14,819
A HOSPITAL THAT INCLUDES A 

4737
04:17:14,819 --> 04:17:16,321
SPECIALIST AND DEFINING THAT 

4738
04:17:16,321 --> 04:17:16,955
SICKLE CELL DISEASE SPECIALIST 

4739
04:17:16,955 --> 04:17:18,256
AND THEY SHOULD BE COMING OUT 

4740
04:17:18,256 --> 04:17:19,924
FOR FINAL VOTE IN THE NEXT 

4741
04:17:19,924 --> 04:17:21,426
COUPLE MONTHS.

4742
04:17:21,426 --> 04:17:23,395
HOPEFULLY BY THIS TIME NEXT YEAR

4743
04:17:23,395 --> 04:17:24,596
WE'LL BE PUBLISHED.

4744
04:17:24,596 --> 04:17:27,766
WE FOCUSSED ON PALLIATIVE AND 

4745
04:17:27,766 --> 04:17:30,902
CANCER MANAGEMENT IN PEOPLE WITH

4746
04:17:30,902 --> 04:17:32,570
SICKLE CELL DISEASE AND CBO 

4747
04:17:32,570 --> 04:17:32,871
INTEGRATION.

4748
04:17:32,871 --> 04:17:35,306
WE STARTED THE DISCUSSION ABOUT 

4749
04:17:35,306 --> 04:17:37,609
THE RIGHT PATIENT FOR GENE 

4750
04:17:37,609 --> 04:17:37,876
THERAPY.

4751
04:17:37,876 --> 04:17:38,476
THAT'S A MORE COMPLEX 

4752
04:17:38,476 --> 04:17:39,778
CONVERSATION WE PLAN FOR TWO 

4753
04:17:39,778 --> 04:17:44,749
YEARS OF DISCUSSIONS BEFORE WE 

4754
04:17:44,749 --> 04:17:51,489
MOVE IT BACK IN TO THE CONSENSUS

4755
04:17:51,489 --> 04:18:00,932
PLACE.

4756
04:18:00,932 --> 04:18:03,835
AND NOW I TAKE PLEASURE IN 

4757
04:18:03,835 --> 04:18:07,539
INTRODUCING DR. LANZKRON A 

4758
04:18:07,539 --> 04:18:10,074
PROFESSOR IN THE DIVISION HEAD 

4759
04:18:10,074 --> 04:18:13,812
OF HEMATOLOGY AT THOMAS 

4760
04:18:13,812 --> 04:18:15,547
JEFFERSON AND WILL TALK ABOUT 

4761
04:18:15,547 --> 04:18:16,881
SOMEBODY IMPORTANT THAT'S BEEN A

4762
04:18:16,881 --> 04:18:18,349
CENTER POINT THE ANNUAL 

4763
04:18:18,349 --> 04:18:19,751
COMPREHENSIVE CARE VISIT FOR 

4764
04:18:19,751 --> 04:18:30,261
INDIVIDUALS WITH SICKLE CELL.

4765
04:18:43,842 --> 04:18:47,779
>> I'LL TALK WITH THE
VISIT AT 

4766
04:18:47,779 --> 04:18:52,116
OUR CONSENSUS MEETING AND HOW TO

4767
04:18:52,116 --> 04:18:53,218
INTEGRATE ACROSS DATABASES AND 

4768
04:18:53,218 --> 04:19:03,628
USE IT TO IMPROVE CARE.

4769
04:19:05,430 --> 04:19:10,802
WE ALL KNOW PEOPLE WE SEE WITH 

4770
04:19:10,802 --> 04:19:11,703
SICKLE CELL DISEASE IS 

4771
04:19:11,703 --> 04:19:12,370
ASSOCIATED WITH SIGNIFICANT 

4772
04:19:12,370 --> 04:19:13,838
MORBIDITY AND MORTALITY AND THE 

4773
04:19:13,838 --> 04:19:16,941
GOAL OF THE VISIT IS TRYING TO 

4774
04:19:16,941 --> 04:19:19,210
IDENTIFY THE RISK FACTORS AND 

4775
04:19:19,210 --> 04:19:20,245
ACT UPON THEM WHEN THERE'S 

4776
04:19:20,245 --> 04:19:25,950
EVIDENCE TO SUPPORT DOING THAT.

4777
04:19:25,950 --> 04:19:27,018
IT'S INTERESTING THE GENERAL 

4778
04:19:27,018 --> 04:19:31,789
POPULATION AS A WHOLE NOT JUST 

4779
04:19:31,789 --> 04:19:34,125
PEOPLE WITH SICKLE CELL DISEASE 

4780
04:19:34,125 --> 04:19:35,727
AND RECOMMENDS AGAINST HEALTH 

4781
04:19:35,727 --> 04:19:39,731
CHECKS FOR ASYMPTOMATIC ADULTS 

4782
04:19:39,731 --> 04:19:42,200
AND THE PEOPLE WE TAKE CARE OF 

4783
04:19:42,200 --> 04:19:45,770
ARE NOT ASYMPTOMATIC ADULTS FOR 

4784
04:19:45,770 --> 04:19:47,472
THE GENERAL POPULATION THERE 

4785
04:19:47,472 --> 04:19:48,840
SHOULD BE ANNUAL REVIEWS BECAUSE

4786
04:19:48,840 --> 04:19:55,179
THEY PROMOTE TRUST WITH 

4787
04:19:55,179 --> 04:20:05,390
PHYSICIANS.

4788
04:20:29,247 --> 04:20:30,281
SO THE PREVIOUS SLIDES TALKED 

4789
04:20:30,281 --> 04:20:32,717
ABOUT WHERE THERE WERE BENEFITS 

4790
04:20:32,717 --> 04:20:34,118
FOR MORTALITY AND SOME HEALTH 

4791
04:20:34,118 --> 04:20:34,919
BEHAVIORS IMPROVED WHEN YOU TWO 

4792
04:20:34,919 --> 04:20:43,428
AN ANNUAL VISIT.

4793
04:20:43,428 --> 04:20:44,495
THERE'S NO DATA IN SICKLE CELL 

4794
04:20:44,495 --> 04:20:47,131
DISEASE AND I LEARNED HOW I TAKE

4795
04:20:47,131 --> 04:20:51,469
CARE OF PEOPLE NOT FROM A 

4796
04:20:51,469 --> 04:20:53,605
TEXTBOOK FROM MENTORS AND 

4797
04:20:53,605 --> 04:20:56,808
THERE'S SOME DATA IN THE 

4798
04:20:56,808 --> 04:20:57,875
GUIDELINES THE NHLBI GUIDELINES 

4799
04:20:57,875 --> 04:21:04,616
NOW A DECADE OLD.

4800
04:21:04,616 --> 04:21:06,751
A LOT OF THIS IS NOT EVIDENCE 

4801
04:21:06,751 --> 04:21:07,752
BASED AND VARIES ACROSS 

4802
04:21:07,752 --> 04:21:08,219
INSTITUTIONS.

4803
04:21:08,219 --> 04:21:09,887
AS A SICKLE COMMUNITY TO IMPROVE

4804
04:21:09,887 --> 04:21:15,226
CARE WE NEED TO BUILD EVIDENCE 

4805
04:21:15,226 --> 04:21:16,861
BUT CAN'T WAIT FOR THAT EVIDENCE

4806
04:21:16,861 --> 04:21:18,496
WE NEED THE ABILITY TO HELP US 

4807
04:21:18,496 --> 04:21:28,873
DEFINE BEST PRACTICES.

4808
04:21:33,378 --> 04:21:35,179
WE HAVE TO MEASURE AND ANALYZE 

4809
04:21:35,179 --> 04:21:39,751
DATA AGAINST IMPROVEMENTS.

4810
04:21:39,751 --> 04:21:43,054
SO YOU HEARD LATE ABOUT WHY 

4811
04:21:43,054 --> 04:21:44,355
THEY'RE MAKING THE 

4812
04:21:44,355 --> 04:21:45,923
RECOMMENDATIONS IT'S TO 

4813
04:21:45,923 --> 04:21:47,925
FACILITATE PRACTICE 

4814
04:21:47,925 --> 04:21:49,027
HARMONIZATION AND PRACTICE IN A 

4815
04:21:49,027 --> 04:21:58,102
SIMILAR WAY ACROSS SITES.

4816
04:21:58,102 --> 04:22:03,641
 CONSENSUS ON THE 

4817
04:22:03,641 --> 04:22:04,008
RECOMMENDATIONS.

4818
04:22:04,008 --> 04:22:09,547
AND TO REINFORCE THE VOTING 

4819
04:22:09,547 --> 04:22:15,920
PROCESS AND ARE ABLE TO AND THEN

4820
04:22:15,920 --> 04:22:20,692
WE HAVE VOTE AFTER DISCUSSION 

4821
04:22:20,692 --> 04:22:22,126
ABOUT THE RECOMMENDATIONS AND 

4822
04:22:22,126 --> 04:22:22,960
THE STANDARDS AND 

4823
04:22:22,960 --> 04:22:24,529
RECOMMENDATIONS ARE SENT TO ALL 

4824
04:22:24,529 --> 04:22:26,698
THE SITES AND THINGS ARE 

4825
04:22:26,698 --> 04:22:29,033
INCLUDED AS A CONCENSUS 

4826
04:22:29,033 --> 04:22:30,068
RECOMMENDATION ARE STANDARD IF 

4827
04:22:30,068 --> 04:22:38,209
70% OF SITES AGREE.

4828
04:22:38,209 --> 04:22:40,945
THIS INCLUDED THE STANDARDS 

4829
04:22:40,945 --> 04:22:42,613
GOING TO 81 FULL AND ASSOCIATE 

4830
04:22:42,613 --> 04:22:44,215
SITE MEMBERS WHO VOTED ON THESE 

4831
04:22:44,215 --> 04:22:50,588
RECOMMENDATIONS.

4832
04:22:50,588 --> 04:22:54,092
AND TO REMIND YOU FOR ALL THE 

4833
04:22:54,092 --> 04:22:57,361
RECOMMENDATIONS WE BROKE THEM 

4834
04:22:57,361 --> 04:23:03,201
DOWN TO STANDARD FOR SAFE AND 

4835
04:23:03,201 --> 04:23:04,602
ADEQUATE CARE AND RECOMMENDED 

4836
04:23:04,602 --> 04:23:05,636
ARE THOSE BENEFICIAL AND 

4837
04:23:05,636 --> 04:23:10,041
PROVIDERS SHOULD PROBABLY TRY TO

4838
04:23:10,041 --> 04:23:10,742
FOLLOW FOR WHICH THERE'S LESS 

4839
04:23:10,742 --> 04:23:21,185
EVIDENCE TO SUPPORT THEM.

4840
04:23:25,423 --> 04:23:27,658
AND SHOULD INCLUDE ACUTE CARE 

4841
04:23:27,658 --> 04:23:31,496
USE AND TREATMENT SETTINGS AS 

4842
04:23:31,496 --> 04:23:32,563
WELL AS HOSPITALIZATIONS AND 

4843
04:23:32,563 --> 04:23:35,233
ANOTHER STANDARD IS HOW ADULTS 

4844
04:23:35,233 --> 04:23:37,568
WITH SICKLE CELL DISEASE HAVE AN

4845
04:23:37,568 --> 04:23:38,136
ESTABLISHED PRIMARY CARE 

4846
04:23:38,136 --> 04:23:40,571
PROVIDER AND PROVIDE SCREENING 

4847
04:23:40,571 --> 04:23:42,807
IN ADDITION TO THEIR ITEMS I 

4848
04:23:42,807 --> 04:23:48,312
WILL NOW DETAIL.

4849
04:23:48,312 --> 04:23:50,114
ALL ADULTS WITH SICKLE CELL 

4850
04:23:50,114 --> 04:23:52,750
DISEASE SHOULD BE REFERRED TO 

4851
04:23:52,750 --> 04:23:54,051
LOCAL OR NATIONAL SICKLE CELL 

4852
04:23:54,051 --> 04:23:55,119
DISEASE ORGANIZATIONS FOR 

4853
04:23:55,119 --> 04:23:58,289
SUPPORT IF AVAILABLE.

4854
04:23:58,289 --> 04:24:00,792
AS A RECOMMENDATION THOSE ON 

4855
04:24:00,792 --> 04:24:02,260
MODIFYING THERAPY OR REQUIRE 

4856
04:24:02,260 --> 04:24:04,128
PRESCRIPTIONS FOR OPIOIDS SHOULD

4857
04:24:04,128 --> 04:24:05,463
BE SEEN EVERY THREE MONTHS FOR 

4858
04:24:05,463 --> 04:24:09,300
FOLLOW-UP AND ADULTS WITH MORE 

4859
04:24:09,300 --> 04:24:11,769
MILD DISEASE PHENOTYPE EVERY SIX

4860
04:24:11,769 --> 04:24:18,109
MONTHS.

4861
04:24:18,109 --> 04:24:19,710
AND THE ANNUAL COMPREHENSIVE 

4862
04:24:19,710 --> 04:24:20,077
HISTORY.

4863
04:24:20,077 --> 04:24:23,414
IT'S RECOMMENDED ALL ADULTS 

4864
04:24:23,414 --> 04:24:24,782
RECEIVE THE STANDARD ANNUAL 

4865
04:24:24,782 --> 04:24:27,685
VISIT WHICH I'M GOING TO GO IN 

4866
04:24:27,685 --> 04:24:29,053
THE DETAILS FOR AND INTENSE BUT 

4867
04:24:29,053 --> 04:24:32,623
IT'S IMPORTANT.

4868
04:24:32,623 --> 04:24:37,528
AGAIN ONE OF THE MAIN REASONS 

4869
04:24:37,528 --> 04:24:40,031
DEVELOP TRUST AND IMPROVE THE 

4870
04:24:40,031 --> 04:24:41,065
RELATIONSHIP AND HAVE COMPLEX 

4871
04:24:41,065 --> 04:24:44,302
ILLNESSES AND NEED TO DEAL WITH 

4872
04:24:44,302 --> 04:24:46,170
CHRONIC PAIN AND TRACK ACUTE 

4873
04:24:46,170 --> 04:24:48,039
CARE UTILIZATION AND MAKE 

4874
04:24:48,039 --> 04:24:50,007
DECISIONS ABOUT DISEASE 

4875
04:24:50,007 --> 04:24:50,675
MODIFYING THERAPY AND DISCUSS 

4876
04:24:50,675 --> 04:24:56,681
NOVEL THERAPIES AS WELL.

4877
04:24:56,681 --> 04:24:59,450
SO MOVING ON TO CEREBRAL 

4878
04:24:59,450 --> 04:25:00,952
VASCULAR DISEASE.

4879
04:25:00,952 --> 04:25:03,187
THE STANDARDS EVERY PERSON 

4880
04:25:03,187 --> 04:25:04,222
SHOULD UNDER GO AN EVALUATION 

4881
04:25:04,222 --> 04:25:07,792
FOR DEFICITS DURING THE ANNUAL 

4882
04:25:07,792 --> 04:25:09,861
COMPREHENSIVE VISIT.

4883
04:25:09,861 --> 04:25:12,997
EVERY ADULT SHOULD UNDER GO A 

4884
04:25:12,997 --> 04:25:14,832
QUALITATIVE AND FUNCTIONAL 

4885
04:25:14,832 --> 04:25:15,766
ASSESSMENT DURING THE ANNUAL 

4886
04:25:15,766 --> 04:25:19,503
VISIT AND VALIDATED ASSESSMENTS 

4887
04:25:19,503 --> 04:25:23,741
ARE NOT QUITE AVAILABLE BUT 

4888
04:25:23,741 --> 04:25:25,309
HOPEFULLY PENDING AND WE'LL HAVE

4889
04:25:25,309 --> 04:25:27,778
A TOOL FOR THE SCREENING AND 

4890
04:25:27,778 --> 04:25:30,781
RECOMMENDATION WAS TO REFER TO A

4891
04:25:30,781 --> 04:25:33,150
NEUROPSYCHOLOGIST IF 

4892
04:25:33,150 --> 04:25:36,187
ABNORMALITIES IN NEUROLOGIC 

4893
04:25:36,187 --> 04:25:37,355
FUNCTIONS ARE IDENTIFIED.

4894
04:25:37,355 --> 04:25:39,824
ONE OF THE THINGS I DIDN'T 

4895
04:25:39,824 --> 04:25:46,197
MENTION IS WE DON'T GO AGAINST 

4896
04:25:46,197 --> 04:25:50,234
EVIDENCE-BASED GUIDELINES AND 

4897
04:25:50,234 --> 04:25:53,037
WE'RE NOT THROUGH THE SAME 

4898
04:25:53,037 --> 04:25:56,240
RIGOROUS PROCESS USED FOR 

4899
04:25:56,240 --> 04:25:56,741
GUIDELINES.

4900
04:25:56,741 --> 04:25:57,541
SO FOR CARDIOVASCULAR ASSESSMENT

4901
04:25:57,541 --> 04:26:00,011
CONSISTENT WITH ASH GUIDELINES 

4902
04:26:00,011 --> 04:26:02,346
ADULTS WITH SICKLE CELL DISEASE 

4903
04:26:02,346 --> 04:26:05,516
SHOULD BE SCREENED ANNUALLY AND 

4904
04:26:05,516 --> 04:26:07,151
MAY REQUIRE ADDITIONAL TESTING 

4905
04:26:07,151 --> 04:26:09,954
AND CAN YOU WALK FIVE BLOCKS ON 

4906
04:26:09,954 --> 04:26:14,058
A FLAT SURFACE OR CLIMB THREE 

4907
04:26:14,058 --> 04:26:16,193
FLIGHTS OF STAIRS OR EXPERIENCE 

4908
04:26:16,193 --> 04:26:17,728
DIZZINESS WHEN YOU WALK AT NIGHT

4909
04:26:17,728 --> 04:26:20,164
UNABLE TO CATCH YOUR BREATH.

4910
04:26:20,164 --> 04:26:22,133
IF THE ANSWER TO ANY OF THESE IS

4911
04:26:22,133 --> 04:26:27,104
YES ECHO IS RECOMMENDED AND 

4912
04:26:27,104 --> 04:26:29,974
DETERMINATION IS UNCLEAR AND IF 

4913
04:26:29,974 --> 04:26:31,409
THE ANSWER TO ALL IS KNOWN 

4914
04:26:31,409 --> 04:26:32,643
CLINICIAN CAN USE THEIR CLINICAL

4915
04:26:32,643 --> 04:26:35,746
JUNCTION AND REVIEW OF ALL 

4916
04:26:35,746 --> 04:26:38,382
CLINICAL GUIDELINES TO APPROACH 

4917
04:26:38,382 --> 04:26:48,859
CLINICAL DIAGNOSTIC TESTING.

4918
04:26:56,367 --> 04:27:06,610
AND HYPERTENSION.

4919
04:27:07,745 --> 04:27:09,313
AND IF AN ECHO IS PERFORMED 

4920
04:27:09,313 --> 04:27:15,453
ATTENTION SHOULD BE PAID TO ALL 

4921
04:27:15,453 --> 04:27:25,963
ASPECTS OF THE HEART AND ALL 

4922
04:27:27,732 --> 04:27:28,632
ADULTS WITH SICKLE CELL DISEASE 

4923
04:27:28,632 --> 04:27:31,035
SHOULD BE SCREENED FOR SYMPTOMS 

4924
04:27:31,035 --> 04:27:35,873
OF OBSTRUCTIVE SLEEP APNEA AND 

4925
04:27:35,873 --> 04:27:37,842
ROUTINE SCREENING WITH PFTs IS 

4926
04:27:37,842 --> 04:27:40,411
NOT RECOMMENDED AS PER MULTIPLE 

4927
04:27:40,411 --> 04:27:41,612
GUIDELINES BUT PROVIDERS SHOULD 

4928
04:27:41,612 --> 04:27:43,014
HAVE A LOW THRESHOLD FOR 

4929
04:27:43,014 --> 04:27:45,516
PERFORMING THESE WITH RISK 

4930
04:27:45,516 --> 04:27:48,486
FACTORS AS PER THE ASH GUIDELINE

4931
04:27:48,486 --> 04:27:51,789
I'VE LISTED HERE BUT WILL NOT GO

4932
04:27:51,789 --> 04:28:02,066
OVER.

4933
04:28:02,066 --> 04:28:04,235
CAPACITY SHOULD BE PERFORMED AND

4934
04:28:04,235 --> 04:28:06,537
THE FOLLOWING SHOULD PROMPT A 

4935
04:28:06,537 --> 04:28:07,938
REFERRAL TO PULMONARY.

4936
04:28:07,938 --> 04:28:10,941
WE OFTEN DO THE TESTS AND DON'T 

4937
04:28:10,941 --> 04:28:14,712
KNOW WHEN OR REFER TO PULMONARY.

4938
04:28:14,712 --> 04:28:20,518
IF THEY CONNECTED TO AN LUNG 

4939
04:28:20,518 --> 04:28:24,221
CAPACITY OF LESS THAN 70% AND 

4940
04:28:24,221 --> 04:28:26,624
FCV IS LESS THAN 70% OR CONCERN 

4941
04:28:26,624 --> 04:28:29,693
OF ASTHMA OR IF THEIR DIFFUSION 

4942
04:28:29,693 --> 04:28:33,931
IS LESS THAN 60% PREDICT AND 

4943
04:28:33,931 --> 04:28:34,732
INDIVIDUALS WITH INTERSTITIAL 

4944
04:28:34,732 --> 04:28:38,736
LUNG DISEASE IDENTIFIED IN CT 

4945
04:28:38,736 --> 04:28:41,138
IMAGING, THEY SHOULD BE REFERRED

4946
04:28:41,138 --> 04:28:43,774
TO PULMONARY MEDICINE PRIOR TO 

4947
04:28:43,774 --> 04:28:46,277
TESTING AND THIS IS STANDARD OF 

4948
04:28:46,277 --> 04:28:56,754
CARE IN PULMONARY MEDICINE.

4949
04:28:57,755 --> 04:29:01,859
AND SCREENED FOR CONSTIPATION IN

4950
04:29:01,859 --> 04:29:07,364
THE LARGE SPLEEN AND 

4951
04:29:07,364 --> 04:29:09,567
THROMBOCYTOPENIA AND CONFIRMED 

4952
04:29:09,567 --> 04:29:11,769
WITH ULTRASOUND IF THERE'S AN 

4953
04:29:11,769 --> 04:29:16,774
ABSENCE OF SPLENNOMEGGALLY 

4954
04:29:16,774 --> 04:29:19,276
PATIENTS MAY REQUIRE ADDITIONAL 

4955
04:29:19,276 --> 04:29:19,710
WORKUP.

4956
04:29:19,710 --> 04:29:22,246
FOR RENAL THIS SHOULD NOT BE 

4957
04:29:22,246 --> 04:29:23,981
SHOCKING THOSE WITH SICKLE CELL 

4958
04:29:23,981 --> 04:29:28,285
DISEASE SHOULD HAVE A SCREENING 

4959
04:29:28,285 --> 04:29:37,128
OF CREATIN AND WE DID NOT VOTE 

4960
04:29:37,128 --> 04:29:38,496
ON WHEN TO INITIATIVE ARMS BUT 

4961
04:29:38,496 --> 04:29:45,936
THAT WILL BE HAPPENING IN THE 

4962
04:29:45,936 --> 04:29:46,170
FUTURE.

4963
04:29:46,170 --> 04:29:48,539
ALL PEOPLE WITH SICKLE CELL 

4964
04:29:48,539 --> 04:29:52,209
DISEASE SHOULD BE SCREENED FOR 

4965
04:29:52,209 --> 04:29:57,248
HISTORY OF PRIAPISM AND ERECTILE

4966
04:29:57,248 --> 04:30:00,651
DYSFUNCTION AND ACCESS TO 

4967
04:30:00,651 --> 04:30:01,685
CONTRACEPTION IF DESIRED AND 

4968
04:30:01,685 --> 04:30:04,255
THOSE WITH MENSTRUAL ASSOCIATED 

4969
04:30:04,255 --> 04:30:05,923
VOC SHOULD BE CONSIDERED FOR 

4970
04:30:05,923 --> 04:30:08,659
HORMONAL CONTRACEPTION AND 

4971
04:30:08,659 --> 04:30:09,693
DISCUSS FERTILITY OPTIONS 

4972
04:30:09,693 --> 04:30:11,762
INCLUDING THE RISK OF DISEASE 

4973
04:30:11,762 --> 04:30:14,932
MODIFYING MODIFICATIONS AT EACH 

4974
04:30:14,932 --> 04:30:19,770
VISIT AND REFERRALS TO REI IF 

4975
04:30:19,770 --> 04:30:22,573
NEEDED.

4976
04:30:22,573 --> 04:30:26,310
SKIN, ALL PATIENTS SHOULD HAVE A

4977
04:30:26,310 --> 04:30:27,645
DETAILED SKIN EXAM FOR EVIDENCE 

4978
04:30:27,645 --> 04:30:31,515
OF LEG ULCERS.

4979
04:30:31,515 --> 04:30:34,485
IF THERE'S RECURRENT SKIN 

4980
04:30:34,485 --> 04:30:36,987
ULCERATIONS THERE SHOULD BE 

4981
04:30:36,987 --> 04:30:40,424
CONSIDERATIONS OF DISEASE 

4982
04:30:40,424 --> 04:30:47,031
MODIFYING THERAPY.

4983
04:30:47,031 --> 04:30:49,733
ALL ADULTS WITH SICKLE CELL 

4984
04:30:49,733 --> 04:30:51,035
DISEASE SHOULD UNDER GO MEDICAL 

4985
04:30:51,035 --> 04:30:53,370
HEALTH SCREENING FOR ANXIETY AND

4986
04:30:53,370 --> 04:30:56,774
DEPRESSION ON AN ANNUAL BASIS 

4987
04:30:56,774 --> 04:31:02,279
USING TOOLS.

4988
04:31:02,279 --> 04:31:04,181
IRON ASSESSMENTS.

4989
04:31:04,181 --> 04:31:05,382
ALL PEOPLE WITH SICKLE CELL 

4990
04:31:05,382 --> 04:31:07,785
DISEASE RECEIVING LONG TRANS 

4991
04:31:07,785 --> 04:31:09,253
FUSION SHOULD HAVE MONITORING 

4992
04:31:09,253 --> 04:31:13,958
FOR IRON OVERLOAD AND CHELATION 

4993
04:31:13,958 --> 04:31:22,233
THERAPY AND REGULARLY MONITORED 

4994
04:31:22,233 --> 04:31:26,837
FOR EFFECT.

4995
04:31:26,837 --> 04:31:29,840
MANY PATIENTS END UP GOING FROM 

4996
04:31:29,840 --> 04:31:32,476
HOSPITAL TO HOSPITAL OFTEN 

4997
04:31:32,476 --> 04:31:36,213
GETTING INAPPROPRIATELY 

4998
04:31:36,213 --> 04:31:37,915
TRANSFUSED AND IMPORTANT TO 

4999
04:31:37,915 --> 04:31:43,487
ASSESS FOR IRON OVERLOAD.

5000
04:31:43,487 --> 04:31:49,260
THE RECOMMENDATION INCLUDED ALL 

5001
04:31:49,260 --> 04:31:50,561
PATIENTS WITH ON CHRONIC 

5002
04:31:50,561 --> 04:31:53,030
TRANSFUSION SHOULD HAVE 

5003
04:31:53,030 --> 04:31:55,099
MONITORING OF THEIR LIVER IRON 

5004
04:31:55,099 --> 04:32:02,439
CONCENTRATION USING AN MRI.

5005
04:32:02,439 --> 04:32:03,274
BONE HEALTH.

5006
04:32:03,274 --> 04:32:06,644
ANNUAL VITAMIN W TESTING WITH 

5007
04:32:06,644 --> 04:32:07,278
APPROPRIATE SUPPLEMENTATION AS 

5008
04:32:07,278 --> 04:32:13,784
NEEDED.

5009
04:32:13,784 --> 04:32:16,020
RECOMMENDATION FOR AND THAT 

5010
04:32:16,020 --> 04:32:17,655
SHOULD INCLUDE JOINT SYMPTOMS 

5011
04:32:17,655 --> 04:32:22,259
AND IMAGING ONLY BASED ON 

5012
04:32:22,259 --> 04:32:28,499
POSITIVE FINDINGS.

5013
04:32:28,499 --> 04:32:30,301
AND WHAT'S IMPORTANT IS THE 

5014
04:32:30,301 --> 04:32:31,101
RECOMMENDATION THAT IT'S THE 

5015
04:32:31,101 --> 04:32:33,237
SICKLE CELL CENTER THAT SHOULD 

5016
04:32:33,237 --> 04:32:35,739
ENSURE AND IMPLEMENT AND TRACK 

5017
04:32:35,739 --> 04:32:37,908
WHETHER OR NOT PATIENTS ARE 

5018
04:32:37,908 --> 04:32:41,879
GETTING THE IMMUNIZATIONS 

5019
04:32:41,879 --> 04:32:47,384
INCLUDING PNEUMOCOCCAL AND 

5020
04:32:47,384 --> 04:32:51,322
INFLUENZA AND BOOSTING IS NEEDED

5021
04:32:51,322 --> 04:32:52,389
AND HEPATITIS C SCREENING FOR 

5022
04:32:52,389 --> 04:32:58,562
THOSE ON THERAPY.

5023
04:32:58,562 --> 04:33:00,497
SO WHAT'S NEXT FOR THE 

5024
04:33:00,497 --> 04:33:01,965
RECOMMENDATIONS AND HOW IS 

5025
04:33:01,965 --> 04:33:03,801
STANDARDIZING THE ASSESSMENTS 

5026
04:33:03,801 --> 04:33:04,802
HELPED?

5027
04:33:04,802 --> 04:33:07,237
HOPEFULLY BY STANDARDIZING THE 

5028
04:33:07,237 --> 04:33:08,639
ASSESSMENTS THE SITES IN GRAN 

5029
04:33:08,639 --> 04:33:10,741
DAD WILL BEGIN TO ENTER THE DATA

5030
04:33:10,741 --> 04:33:12,042
ON AN ANNUAL BASIS AND WE'LL BE 

5031
04:33:12,042 --> 04:33:14,144
ABLE TO USE THE TOOLS TO ASSESS 

5032
04:33:14,144 --> 04:33:15,779
HOW WE'RE MANAGING PATIENTS.

5033
04:33:15,779 --> 04:33:18,015
WE'VE ALREADY DONE THAT AND HAVE

5034
04:33:18,015 --> 04:33:22,286
HAD A COUPLE ABSTRACTS IN ASH 

5035
04:33:22,286 --> 04:33:23,587
LOOKING HOW NOT WELL WE DO IN 

5036
04:33:23,587 --> 04:33:27,991
THE REAL WORLD SETTING.

5037
04:33:27,991 --> 04:33:30,627
WE LOOKED AT HOW MUCH TIMES THE 

5038
04:33:30,627 --> 04:33:34,732
PATIENTS HAVE BEEN SCREENED AND 

5039
04:33:34,732 --> 04:33:35,833
ONLY THE 37% HAD ANNUAL 

5040
04:33:35,833 --> 04:33:36,367
OBSERVATIONS.

5041
04:33:36,367 --> 04:33:39,236
MORE THAN A THIRD IN GRAN DAD 

5042
04:33:39,236 --> 04:33:42,606
WITH FERRITIN WERE NOT ON IRON 

5043
04:33:42,606 --> 04:33:45,008
CHELATION AND A QUARTER HAD 

5044
04:33:45,008 --> 04:33:48,445
IMAGING STUDIES TO ASSESS.

5045
04:33:48,445 --> 04:33:50,080
AND WE HAVE NOT PUBLISHED WHAT 

5046
04:33:50,080 --> 04:33:52,316
SITES DO BETTER THAN OTHERS.

5047
04:33:52,316 --> 04:33:55,786
IF THERE ARE SITES DOING WELL I 

5048
04:33:55,786 --> 04:33:58,021
KNOW THERE'S AN OVERLOAD CLINIC 

5049
04:33:58,021 --> 04:33:59,790
EMBEDDED IN A PROGRAM.

5050
04:33:59,790 --> 04:34:02,493
IF THE RESULTS ARE GREAT MAYBE 

5051
04:34:02,493 --> 04:34:04,461
IT'S SOMETHING WE CAN LEARN FROM

5052
04:34:04,461 --> 04:34:07,765
AND SEE IF WE CAN'T IMPROVE SOME

5053
04:34:07,765 --> 04:34:14,905
OF THE NUMBERS.

5054
04:34:14,905 --> 04:34:19,543
A

5055
04:34:21,845 --> 04:34:25,983
WE HAVE A HEALTH MAINTENANCE 

5056
04:34:25,983 --> 04:34:30,187
SHEET AND DATA FROM GRAN DAD AND

5057
04:34:30,187 --> 04:34:31,789
INCLUDED THE LABORATORY 

5058
04:34:31,789 --> 04:34:34,525
SCREENING, WHETHER THE PATIENT 

5059
04:34:34,525 --> 04:34:37,628
HAD THE ANNUAL EYE EXAM AND 

5060
04:34:37,628 --> 04:34:39,930
WHETHER KIDS HAVE RECEIVED 

5061
04:34:39,930 --> 04:34:43,100
RECOMMENDED VACCINATIONS AND 

5062
04:34:43,100 --> 04:34:46,537
VERIFIES WHEN PATIENTS ARE NOT 

5063
04:34:46,537 --> 04:34:50,941
ON DISEASE MODIFYING THERAPY.

5064
04:34:50,941 --> 04:34:53,777
AND I FIND IT HELPFUL BEFORE I 

5065
04:34:53,777 --> 04:34:56,713
SEE PATIENTS AND THERE'S IMAGING

5066
04:34:56,713 --> 04:35:04,054
AND IMMUNIZATIONS AND NOTES 

5067
04:35:04,054 --> 04:35:04,688
MOTIVATES ME TO HAVE THE TESTS 

5068
04:35:04,688 --> 04:35:11,261
DONE.

5069
04:35:11,261 --> 04:35:14,865
FINALLY I WANT TO TALK ABOUT 

5070
04:35:14,865 --> 04:35:17,501
PROs AND HOW WE MIGHT BE ABLE TO

5071
04:35:17,501 --> 04:35:20,637
USE THEM IN THE FUTURE.

5072
04:35:20,637 --> 04:35:23,841
THIS IS THE ASK ME DOMAINS.

5073
04:35:23,841 --> 04:35:26,510
THIS HAS BEEN FIELD TESTS IN 

5074
04:35:26,510 --> 04:35:28,212
PEOPLE WITH SICKLE CELL DISEASE 

5075
04:35:28,212 --> 04:35:31,782
AND SCORES HAVE BEEN 

5076
04:35:31,782 --> 04:35:40,524
STANDARDIZED TO A MEAN OF 50 AND

5077
04:35:40,524 --> 04:35:42,926
ASQ ME SCORES ARE REQUIRED IN 

5078
04:35:42,926 --> 04:35:46,897
GRAN DAD AND THEY'RE ASKED TO 

5079
04:35:46,897 --> 04:35:51,535
COMPLETE IT ON THE ANNUAL BASIS.

5080
04:35:51,535 --> 04:35:54,004
WE LOOKED AT THE DATA A YEAR OR 

5081
04:35:54,004 --> 04:35:55,506
TWO AGO WHERE WE LOOKED AT THE 

5082
04:35:55,506 --> 04:35:58,342
RESULTS FOR PEOPLE PARTICIPATING

5083
04:35:58,342 --> 04:36:06,483
IN GRAN DAD AND FILLED OUT THE 

5084
04:36:06,483 --> 04:36:16,994
ASQ ME AND I THINK THE SCORES 

5085
04:36:26,203 --> 04:36:27,704
ARE INTERESTING AND WITH WHAT WE

5086
04:36:27,704 --> 04:36:30,007
CALL SEVERE DISEASE AND WHAT WE 

5087
04:36:30,007 --> 04:36:31,775
DON'T AND I THINK PROs ARE 

5088
04:36:31,775 --> 04:36:37,915
REALLY IMPORTANT TOOLS.

5089
04:36:37,915 --> 04:36:39,750
AND OUR COLLEAGUES WHO TAKE CARE

5090
04:36:39,750 --> 04:36:42,152
OF PEOPLE WITH RHEUMATOID 

5091
04:36:42,152 --> 04:36:43,086
ARTHRITIS THINK THEY'RE 

5092
04:36:43,086 --> 04:36:43,754
IMPORTANT TOOLS.

5093
04:36:43,754 --> 04:36:51,828
I'LL TALK HOW THEY'RE USED IN 

5094
04:36:51,828 --> 04:36:54,331
RHEUMATOID ARTHRITIS AND BASIS 

5095
04:36:54,331 --> 04:36:57,601
ON A REVIEW THAT IDENTIFIED 

5096
04:36:57,601 --> 04:36:58,669
RANDOMIZED CONTROL TRIALS WHERE 

5097
04:36:58,669 --> 04:37:01,138
PROs WERE ASSESSED AS A PRIMARY 

5098
04:37:01,138 --> 04:37:03,240
OUTCOME OF THE STUDIES.

5099
04:37:03,240 --> 04:37:06,310
IT'S NOT DONE FOR SICKLE CELL 

5100
04:37:06,310 --> 04:37:06,910
DISEASE.

5101
04:37:06,910 --> 04:37:08,779
44 OF THE TRIALS USE PROs 

5102
04:37:08,779 --> 04:37:10,781
ASSESSED AT SECONDARY OUTCOMES.

5103
04:37:10,781 --> 04:37:13,016
THE MEASURES THEY USED SOME OF 

5104
04:37:13,016 --> 04:37:14,785
WHICH ARE PROMISED TOOLS ARE 

5105
04:37:14,785 --> 04:37:17,621
USED AND WIDELY AVAILABLE AND 

5106
04:37:17,621 --> 04:37:21,992
PROVIDER IMPORTANT PERSPECTIVES 

5107
04:37:21,992 --> 04:37:23,193
OFTEN NOT CAPTURED IN THE 

5108
04:37:23,193 --> 04:37:24,328
RESPONSE CRITERIA.

5109
04:37:24,328 --> 04:37:27,731
SOUNDS FAMILIAR THEY USE FOR 

5110
04:37:27,731 --> 04:37:33,036
RHEUMATOID ARTHRITIS.

5111
04:37:33,036 --> 04:37:36,607
DIVISION OF RHEUMATOLOGY AT 

5112
04:37:36,607 --> 04:37:39,142
HOPKINS USED COMPUTERS FOR 

5113
04:37:39,142 --> 04:37:40,310
PATIENTS TO COMPLETE THEM WHILE 

5114
04:37:40,310 --> 04:37:43,413
WAITING IN THE WAITING ROOM AND 

5115
04:37:43,413 --> 04:37:48,485
THEY REVIEW THE TOOLS AND SORT 

5116
04:37:48,485 --> 04:37:59,029
OF DEVELOPED THIS IMAGE FOR EACH

5117
04:38:03,567 --> 04:38:03,800
PATIENT.

5118
04:38:03,800 --> 04:38:06,837
SO RED THEY'RE MORE THAN TWO 

5119
04:38:06,837 --> 04:38:08,939
STANDARD DEVIATIONS AWAY FROM 

5120
04:38:08,939 --> 04:38:10,340
THE STANDARD SCORE AND THIS IS 

5121
04:38:10,340 --> 04:38:12,376
SOMETHING THEY CAN TRACK OVER 

5122
04:38:12,376 --> 04:38:14,011
TIME TO ASSESS RESPONSE TO 

5123
04:38:14,011 --> 04:38:14,745
THERAPY.

5124
04:38:14,745 --> 04:38:17,180
AND THEY USE THIS IN THE CLINIC 

5125
04:38:17,180 --> 04:38:19,783
AND USE THIS TOOL TO CHANGE 

5126
04:38:19,783 --> 04:38:25,222
PATIENT'S THERAPIES.

5127
04:38:25,222 --> 04:38:26,990
I THINK A LOT OF THIS COULD BE 

5128
04:38:26,990 --> 04:38:27,691
POTENTIALLY SOMETHING WE CAN 

5129
04:38:27,691 --> 04:38:29,626
TEST AND USE IN THE CLINIC 

5130
04:38:29,626 --> 04:38:34,331
SETTING TO HELP IMPROVE OUTCOMES

5131
04:38:34,331 --> 04:38:39,670
FOR OUR PATIENTS.

5132
04:38:39,670 --> 04:38:41,071
I TALKED ABOUT ANNUAL SCREENING.

5133
04:38:41,071 --> 04:38:43,373
AND THE REAL KEY IS THE 

5134
04:38:43,373 --> 04:38:44,941
IMPORTANCE WE STANDARDIZE CARE 

5135
04:38:44,941 --> 04:38:50,280
ACROSS CENTERS AND TRY TO DO THE

5136
04:38:50,280 --> 04:38:54,351
SAME THINGS AND WE'LL DO QI ON 

5137
04:38:54,351 --> 04:38:59,423
THE RESULTS AND OUTCOMES AND WE 

5138
04:38:59,423 --> 04:39:04,194
ARE USING GRAN DAD FOR QUALITY 

5139
04:39:04,194 --> 04:39:05,228
IMPROVEMENT AND REMIND PEOPLE 

5140
04:39:05,228 --> 04:39:06,663
WHAT NEEDS TO BE DONE ON AN 

5141
04:39:06,663 --> 04:39:06,997
ANNUAL BASIS.

5142
04:39:06,997 --> 04:39:07,397
THAT'S ALL I HAVE.

5143
04:39:07,397 --> 04:39:17,574
THANK YOU.

5144
04:39:19,242 --> 04:39:20,277
>> THANK YOU.

5145
04:39:20,277 --> 04:39:22,012
WE'LL TAKE QUESTIONS AT THE END 

5146
04:39:22,012 --> 04:39:26,183
AND MOVE TO THE THIRD DISCUSSION

5147
04:39:26,183 --> 04:39:30,420
DR. GAURINO A MEDICINE AND 

5148
04:39:30,420 --> 04:39:31,788
PEDIATRIC PHYSICIAN AND WORKING 

5149
04:39:31,788 --> 04:39:33,857
CLOSELY WITH THE NATIONAL 

5150
04:39:33,857 --> 04:39:39,196
ALLIANCE AMONG OTHER GROUPS IN 

5151
04:39:39,196 --> 04:39:41,832
IMPROVE TRANSITION THROUGH 

5152
04:39:41,832 --> 04:39:46,103
DOCUMENTATION AND THE 

5153
04:39:46,103 --> 04:39:46,737
CONSENSUS-BASED RECOMMENDATION 

5154
04:39:46,737 --> 04:39:52,509
AND LET STEPHANIE EXPLAIN MORE.

5155
04:39:52,509 --> 04:40:00,317
>> THANK YOU VERY MUCH.

5156
04:40:00,317 --> 04:40:03,453
WE'LL TALK ABOUT THE TRANSITION 

5157
04:40:03,453 --> 04:40:05,322
OF CARE AND THIS CAN BE 

5158
04:40:05,322 --> 04:40:06,690
CHALLENGING FOR PATIENTS WITH 

5159
04:40:06,690 --> 04:40:07,424
SICKLE CELL DISEASE ON MANY 

5160
04:40:07,424 --> 04:40:08,592
LEVEL AND WE'LL DEFINES 

5161
04:40:08,592 --> 04:40:10,160
TRANSITION OF CARE AND TRANSFER 

5162
04:40:10,160 --> 04:40:11,361
OF CARE IN SICKLE CELL DISEASE 

5163
04:40:11,361 --> 04:40:15,832
AS VOTED UPON BY THE ALLIANCE.

5164
04:40:15,832 --> 04:40:17,367
THEN WE'LL DISCUSS WAYS WE CAN 

5165
04:40:17,367 --> 04:40:20,604
START TO TRACK AND MONITOR THIS.

5166
04:40:20,604 --> 04:40:22,906
WE HEARD A COUPLE TIMES HOW 

5167
04:40:22,906 --> 04:40:24,808
IMPORTANT THE ELECTRONIC HEALTH 

5168
04:40:24,808 --> 04:40:27,244
RECORD FOR INCLUDING ACCURATE 

5169
04:40:27,244 --> 04:40:28,211
COMPREHENSIVE INFORMATION FOR 

5170
04:40:28,211 --> 04:40:29,279
PATIENTS WITH SICKLE CELL 

5171
04:40:29,279 --> 04:40:29,513
DISEASE.

5172
04:40:29,513 --> 04:40:32,182
WE CAN EACH DO A GREAT JOB AT 

5173
04:40:32,182 --> 04:40:34,351
OUR CENTER CREATING 

5174
04:40:34,351 --> 04:40:36,419
INDIVIDUALIZED PAIN PLANS OR 

5175
04:40:36,419 --> 04:40:40,223
CAPTURING SEVERITY BUT WHEN 

5176
04:40:40,223 --> 04:40:43,426
PATIENTS TRANSITION INTO AN 

5177
04:40:43,426 --> 04:40:44,161
ADULT COMPREHENSIVE PROGRAM SOME

5178
04:40:44,161 --> 04:40:45,996
INFORMATION GETS LOST.

5179
04:40:45,996 --> 04:40:49,800
HOW CAN WE HELP THE E.H.R. WORK 

5180
04:40:49,800 --> 04:40:51,034
FOR US WHICH I KNOW IS SOMETIMES

5181
04:40:51,034 --> 04:40:52,936
A NOVEL CONCEPT.

5182
04:40:52,936 --> 04:40:54,371
HOW CAN WE USE E.H.R. TOOLS TO 

5183
04:40:54,371 --> 04:41:03,113
CAPTURE AND SUPPORT TRANSITION.

5184
04:41:03,113 --> 04:41:04,648
I DON'T THINK I HAVE TO SPEND 

5185
04:41:04,648 --> 04:41:07,517
TIME SHARING WITH THE AUDIENCE 

5186
04:41:07,517 --> 04:41:10,353
HOW COMPLEX PROPOSITION 

5187
04:41:10,353 --> 04:41:10,787
TRANSITIONING IS.

5188
04:41:10,787 --> 04:41:12,923
IT INVOLVES CLINICIANS, PATIENT 

5189
04:41:12,923 --> 04:41:15,926
AND HEALTH SYSTEM AT MANY 

5190
04:41:15,926 --> 04:41:16,226
LEVELS.

5191
04:41:16,226 --> 04:41:17,727
EVEN WITHIN THE PATIENT REALM 

5192
04:41:17,727 --> 04:41:19,963
THERE ARE BIOLOGICAL, 

5193
04:41:19,963 --> 04:41:25,135
PSYCHOLOGICAL AND SOCIOLOGICAL 

5194
04:41:25,135 --> 04:41:26,937
FACTORS THAT CAN AFFECT 

5195
04:41:26,937 --> 04:41:27,871
TRANSITION AND WHETHER IT GOES 

5196
04:41:27,871 --> 04:41:28,939
WELL OR NOT WELL.

5197
04:41:28,939 --> 04:41:30,974
SO WE'RE ADDRESSING A COUPLE OF 

5198
04:41:30,974 --> 04:41:35,645
THESE AREAS WITH THIS PROJECT.

5199
04:41:35,645 --> 04:41:40,584
SO I'M GOING TO TALK ABOUT TWO 

5200
04:41:40,584 --> 04:41:41,751
PROJECTS IN PARALLEL.

5201
04:41:41,751 --> 04:41:42,586
THE FIRST THING WE STARTED 

5202
04:41:42,586 --> 04:41:43,753
THINKING ABOUT WAS A PROBLEM 

5203
04:41:43,753 --> 04:41:44,287
STATEMENT.

5204
04:41:44,287 --> 04:41:46,389
YOUNG ADULTS WITH SICKLE CELL 

5205
04:41:46,389 --> 04:41:48,325
DISEASE WHO DO NOT SUCCESSFULLY 

5206
04:41:48,325 --> 04:41:51,728
TRANSITION TO ADULT MEDICAL CARE

5207
04:41:51,728 --> 04:41:55,765
OR TO ANOTHER SICKLE CELL HOME 

5208
04:41:55,765 --> 04:41:57,734
HAVING INCREASED UTILIZATION OR 

5209
04:41:57,734 --> 04:42:00,036
RISK FOR SEVERE DEATH AND HOW 

5210
04:42:00,036 --> 04:42:02,138
CAN WE FACILITATE THAT USING 

5211
04:42:02,138 --> 04:42:02,839
E.H.R. SYSTEMS?

5212
04:42:02,839 --> 04:42:05,709
FIRST WE HAVE TO DEFINE WHAT 

5213
04:42:05,709 --> 04:42:06,509
TRANSITION IS.

5214
04:42:06,509 --> 04:42:11,615
YOU KNOW IT CAN BE CHALLENGING.

5215
04:42:11,615 --> 04:42:13,350
ALSO IF WE'RE GOING TO USE THE 

5216
04:42:13,350 --> 04:42:14,651
E.H.R. TO CAPTURE DATA IMPORTANT

5217
04:42:14,651 --> 04:42:15,719
FOR TRANSITION WHAT SORTS OF 

5218
04:42:15,719 --> 04:42:18,288
THINGS DO WE WANT TO KNOW ABOUT?

5219
04:42:18,288 --> 04:42:20,423
WE STARTED OUT WITH A GROUP OF 

5220
04:42:20,423 --> 04:42:23,760
SIX HEMATOLOGISTS, THREE OF WHOM

5221
04:42:23,760 --> 04:42:26,196
WERE PEDIATRIC, THREE OF WHOM 

5222
04:42:26,196 --> 04:42:28,632
WERE PREDOMINANTLY ADULT AND 

5223
04:42:28,632 --> 04:42:30,300
START TO COME UP WITH SOME OF 

5224
04:42:30,300 --> 04:42:35,572
THE ELEMENTS THAT WOULD BE 

5225
04:42:35,572 --> 04:42:39,743
IMPORTANT TO A TRANSITION 

5226
04:42:39,743 --> 04:42:43,747
SUMMARY AND SENT THEM TO CENTERS

5227
04:42:43,747 --> 04:42:48,718
AND WENT THROUGH THE CONSENSUS 

5228
04:42:48,718 --> 04:42:51,755
PROCESS AND AGGRAVATED THE DATA 

5229
04:42:51,755 --> 04:42:53,323
AND DISCUSSED THE ELEMENTS WHICH

5230
04:42:53,323 --> 04:42:56,192
I'LL TALK ABOUT AND THEN CAME UP

5231
04:42:56,192 --> 04:42:58,028
ONE THE FINALIZED SET OF 

5232
04:42:58,028 --> 04:42:58,929
IMPORTANT TRANSITION ELEMENTS.

5233
04:42:58,929 --> 04:43:01,264
I THINK IT REFLECTS SOME GOOD 

5234
04:43:01,264 --> 04:43:04,234
FEEDBACK FROM PEDIATRIC AND 

5235
04:43:04,234 --> 04:43:06,236
ADULT SICKLE CELL CLINICIANS AND

5236
04:43:06,236 --> 04:43:09,372
POTENTIALLY SOME OF THE ADULT 

5237
04:43:09,372 --> 04:43:11,775
CLINICIANS WERE SURPRISED OR THE

5238
04:43:11,775 --> 04:43:13,009
PEDIATRIC CLINICIANS WERE 

5239
04:43:13,009 --> 04:43:14,644
SURPRISED SOME OF THE DETAILS 

5240
04:43:14,644 --> 04:43:15,912
THE ADULT CLINICIANS DIDN'T FEEL

5241
04:43:15,912 --> 04:43:17,614
WERE AS PERTINENT.

5242
04:43:17,614 --> 04:43:20,016
WHAT WE HAVE COME UP WITH TRIES 

5243
04:43:20,016 --> 04:43:22,385
TO CAPTURE BOTH GROUPS NEEDS.

5244
04:43:22,385 --> 04:43:30,827
WE TOOK THE SETS OF ELEMENTS AND

5245
04:43:30,827 --> 04:43:41,338
I WORKED WITH TWO EHRs AND WE 

5246
04:43:46,910 --> 04:43:51,247
PILOT THE TEMPLATES AND ARE 

5247
04:43:51,247 --> 04:43:58,388
COLLECTING DATA ON FEASIBILITY 

5248
04:43:58,388 --> 04:44:05,128
A

5249
04:44:05,128 --> 04:44:11,234
AND THINGS FOR WHICH WE HAVE THE

5250
04:44:11,234 --> 04:44:13,636
BEST EVIDENCE AND HOPE SOME MAY 

5251
04:44:13,636 --> 04:44:15,038
SEEM LIKE COMMON SENSE BUT IT'S 

5252
04:44:15,038 --> 04:44:17,340
IMPORTANT TO WRITE THEM DOWN AND

5253
04:44:17,340 --> 04:44:23,780
HAVE THEM AS OUR GO-TO 

5254
04:44:23,780 --> 04:44:30,020
DOCUMENTS.

5255
04:44:30,020 --> 04:44:31,621
AND WE HAVE ADDITIONAL 

5256
04:44:31,621 --> 04:44:32,622
RECOMMENDATIONS FOR WHICH WE 

5257
04:44:32,622 --> 04:44:35,325
FEEL STRONGLY BUT THERE'S LESS 

5258
04:44:35,325 --> 04:44:35,825
EVIDENCE.

5259
04:44:35,825 --> 04:44:40,263
SO REFERRING COMPREHENSIVE 

5260
04:44:40,263 --> 04:44:43,767
PEDIATRIC AND CLINICIANS 

5261
04:44:43,767 --> 04:44:45,635
PREFERABLY THE ENTIRE TEAM 

5262
04:44:45,635 --> 04:44:49,773
SHOULD HAVE JOINT MEETINGS TO 

5263
04:44:49,773 --> 04:44:50,540
DISCUSS PATIENTS NEAR TRANSITION

5264
04:44:50,540 --> 04:44:54,411
AND JOINT PEDIATRIC TO ADULT 

5265
04:44:54,411 --> 04:44:56,746
TRANSITION SERVICE SHOULD BE 

5266
04:44:56,746 --> 04:44:57,113
AVAILABLE.

5267
04:44:57,113 --> 04:45:00,183
THE PERCENTAGES ARE THE NUMBER 

5268
04:45:00,183 --> 04:45:02,152
OF SICKLE CELL CENTERS THAT 

5269
04:45:02,152 --> 04:45:05,588
AGREED WITH EACH OF THESE 

5270
04:45:05,588 --> 04:45:06,990
STATEMENTS FOR REFERENCE.

5271
04:45:06,990 --> 04:45:08,525
AND EVERY COMPREHENSIVE SICKLE 

5272
04:45:08,525 --> 04:45:10,794
CELL PROGRAM SHOULD HAVE A 

5273
04:45:10,794 --> 04:45:13,897
UNIVERSAL CARE PLAN IN THE 

5274
04:45:13,897 --> 04:45:18,735
E.H.R. TO TRACK SERVICES 

5275
04:45:18,735 --> 04:45:20,036
RELEVANT WHICH IS SOMETHING 

5276
04:45:20,036 --> 04:45:22,372
WE'LL TALK ABOUT LATER AND 

5277
04:45:22,372 --> 04:45:23,773
PEDIATRIC SUMMARY E.H.R. 

5278
04:45:23,773 --> 04:45:26,276
TRANSITION OF CARE HANDOFF NOTE 

5279
04:45:26,276 --> 04:45:28,945
SHOULD BE UTILIZED TO FACILITATE

5280
04:45:28,945 --> 04:45:32,082
HANDOFF BETWEEN PEDIATRIC AND 

5281
04:45:32,082 --> 04:45:33,016
ADULT CARE TRANSITION.

5282
04:45:33,016 --> 04:45:38,221
THESE ARE SOME OF THE WORK 

5283
04:45:38,221 --> 04:45:40,924
YOU'LL SEE LATER IT CAN BE 

5284
04:45:40,924 --> 04:45:42,058
UPDATED FOR THE TRANSITION OF 

5285
04:45:42,058 --> 04:45:42,258
CARE.

5286
04:45:42,258 --> 04:45:43,726
THE GOAL IS NOT TO CREATE MORE 

5287
04:45:43,726 --> 04:45:48,364
WORK BUT CREATE DOCUMENTS THAT 

5288
04:45:48,364 --> 04:45:50,200
CAPTURE IMPORTANT INFORMATION 

5289
04:45:50,200 --> 04:46:00,477
HELP CLINICIANS.

5290
04:46:00,910 --> 04:46:02,579
THERE'S A PROGRESS REPORT AFTER 

5291
04:46:02,579 --> 04:46:04,447
THE INITIAL ADULT VISIT TO SEND 

5292
04:46:04,447 --> 04:46:06,583
BACK TO THE REFERRING CLINICIAN 

5293
04:46:06,583 --> 04:46:09,719
SO THE PEDIATRIC TEAM AND 

5294
04:46:09,719 --> 04:46:10,320
PRIMARY CARE CLINICIAN KNOWS 

5295
04:46:10,320 --> 04:46:10,687
WHAT HAPPENED.

5296
04:46:10,687 --> 04:46:12,722
THIS IS A STANDARD THAT ALL 

5297
04:46:12,722 --> 04:46:15,792
COMPREHENSIVE PEDIATRIC AND 

5298
04:46:15,792 --> 04:46:18,228
ADULT SICKLE CELL CENTERS SHOULD

5299
04:46:18,228 --> 04:46:20,196
TRACK TRANSITION OF CARE AND ALL

5300
04:46:20,196 --> 04:46:22,999
CENTERS SHOULD HAVE A TRANSITION

5301
04:46:22,999 --> 04:46:25,735
COORDINATOR OR PROGRAM DESIGNEE 

5302
04:46:25,735 --> 04:46:28,371
TO FOLLOW PATIENTS FROM 

5303
04:46:28,371 --> 04:46:31,074
PEDIATRIC TO ADULT CARE UNTIL 

5304
04:46:31,074 --> 04:46:31,774
TRANSITION AND PROGRAMS HAVE 

5305
04:46:31,774 --> 04:46:34,377
DIFFERENT WAYS OF DOING THIS OR 

5306
04:46:34,377 --> 04:46:37,614
SUPPORTING PATIENTS AS THEY 

5307
04:46:37,614 --> 04:46:39,782
TRANSITION SO IT WAS LEFT TO BE 

5308
04:46:39,782 --> 04:46:40,416
ABLE TO ACCOMMODATE THE WAY 

5309
04:46:40,416 --> 04:46:43,086
EVERYBODY DOES TRANSITION.

5310
04:46:43,086 --> 04:46:45,755
THE TIME GAP BETWEEN THE LAST 

5311
04:46:45,755 --> 04:46:47,557
CLINICAL VISIT AND THE FIRST 

5312
04:46:47,557 --> 04:46:49,592
CARE VISIT TO ESTABLISH CARE 

5313
04:46:49,592 --> 04:46:51,494
SHOULD BE LESS THAN THREE MONTHS

5314
04:46:51,494 --> 04:46:54,097
AND TRYING TO MINIMIZE THE TIME 

5315
04:46:54,097 --> 04:46:56,432
WHERE PATIENTS CAN GET LOST IN 

5316
04:46:56,432 --> 04:46:58,168
FOLLOW-UP OR HAVE NEEDS NOT 

5317
04:46:58,168 --> 04:47:01,070
BEING MET AND A FORMAL SYSTEM TO

5318
04:47:01,070 --> 04:47:02,672
IDENTIFY TRANSITIONING 

5319
04:47:02,672 --> 04:47:04,574
ADOLESCENT OR PATIENTS NOT 

5320
04:47:04,574 --> 04:47:06,409
HAVING AN INITIAL ADULT VISIT 

5321
04:47:06,409 --> 04:47:10,947
WITHIN THE SIX MONTHS OF THE 

5322
04:47:10,947 --> 04:47:12,515
LAST PEDIATRIC VISIT ESTABLISHED

5323
04:47:12,515 --> 04:47:14,651
AT BOTH CENTERS.

5324
04:47:14,651 --> 04:47:15,752
RELYING ON CENTERS TO BE SURE 

5325
04:47:15,752 --> 04:47:18,421
THE PATIENTS GET TO WHERE THEY 

5326
04:47:18,421 --> 04:47:19,022
NEED TO GO.

5327
04:47:19,022 --> 04:47:23,793
AND IT'S IMPORTANT TO REMEMBER 

5328
04:47:23,793 --> 04:47:25,528
AS PATIENTS TRANSITION THEIR 

5329
04:47:25,528 --> 04:47:26,663
INFORMATION ON THEIR TRANSFUSION

5330
04:47:26,663 --> 04:47:27,997
HISTORY SHOULD FOLLOW THEM.

5331
04:47:27,997 --> 04:47:31,134
SO THE INITIAL ADULT VISIT 

5332
04:47:31,134 --> 04:47:32,502
SHOULD INCLUDE SOME 

5333
04:47:32,502 --> 04:47:33,570
COMMUNICATION BETWEEN BLOOD 

5334
04:47:33,570 --> 04:47:34,671
BANKS WITHOUT GENOTYPES OR 

5335
04:47:34,671 --> 04:47:36,039
PHENOTYPING OR TRANSFUSION 

5336
04:47:36,039 --> 04:47:40,376
HISTORY.

5337
04:47:40,376 --> 04:47:45,548
ONE OF THE MOST IMPORTANT THINGS

5338
04:47:45,548 --> 04:47:48,918
TO COME OUT OF THIS WORK IS 

5339
04:47:48,918 --> 04:47:53,756
DEFINING TRANSITION OF WORK AND 

5340
04:47:53,756 --> 04:47:55,325
TRANSFER OF CARE THE TWO 

5341
04:47:55,325 --> 04:47:56,793
HALLMARKS OF THE PERIOD AND 

5342
04:47:56,793 --> 04:48:00,997
DEFINE A TRANSFER OF CARE AS TWO

5343
04:48:00,997 --> 04:48:02,865
VISITS WITH THE SICKLE CELL 

5344
04:48:02,865 --> 04:48:04,200
VISIT IN THE FIRST YEAR AND THEY

5345
04:48:04,200 --> 04:48:06,002
CAN BE IN PERSON OR TELEMEDICINE

5346
04:48:06,002 --> 04:48:08,571
TO ACCOMMODATE THE WAY HEALTH 

5347
04:48:08,571 --> 04:48:11,241
CARE IS DELIVERED AND TO IMPROVE

5348
04:48:11,241 --> 04:48:12,442
UPTAKE AND MAYBE MORE RURAL 

5349
04:48:12,442 --> 04:48:14,277
AREAS OR PLACES THAT DON'T HAVE 

5350
04:48:14,277 --> 04:48:15,211
A SICKLE CELL CENTER WHERE 

5351
04:48:15,211 --> 04:48:21,417
PATIENTS CAN PHYSICALLY GO.

5352
04:48:21,417 --> 04:48:24,087
INTEGRATION TO ADULT CARE WAS 

5353
04:48:24,087 --> 04:48:26,623
DEFINED AS COMPLETION OF AT 

5354
04:48:26,623 --> 04:48:29,325
LEAST 50% OF THE COMPREHENSIVE 

5355
04:48:29,325 --> 04:48:30,893
VISITS IN THE FIVE YEAR PERIOD 

5356
04:48:30,893 --> 04:48:32,295
AFTER TRANSFER OF CARE.

5357
04:48:32,295 --> 04:48:35,231
THIS MAY BE ONE OF THE MOST 

5358
04:48:35,231 --> 04:48:38,167
IMPORTANT POINTS TO MAKE.

5359
04:48:38,167 --> 04:48:40,069
THE OTHER CRUCIAL PIECE IS THE 

5360
04:48:40,069 --> 04:48:43,139
PATIENT IDENTIFIES THE CENTER AS

5361
04:48:43,139 --> 04:48:44,140
THEIR MEDICAL HOME HELPING THEM 

5362
04:48:44,140 --> 04:48:46,276
FEEL THEY'RE INTEGRATED INTO THE

5363
04:48:46,276 --> 04:48:47,243
NEW CARE TEAM.

5364
04:48:47,243 --> 04:48:52,415
THE DEFINITIONS ALLOW US TO 

5365
04:48:52,415 --> 04:48:53,950
TRACK SUCCESSFUL PROGRAMS OR 

5366
04:48:53,950 --> 04:48:54,717
HELP US TRACK QUALITY OF 

5367
04:48:54,717 --> 04:48:58,221
DIFFERENT INTERVENTIONS OR 

5368
04:48:58,221 --> 04:48:59,088
METRICS OR UNDERSTAND HOW 

5369
04:48:59,088 --> 04:49:02,492
PROGRAMS WORK OR WHERE THERE'S 

5370
04:49:02,492 --> 04:49:03,793
OPPORTUNITIES FOR IMPROVEMENT 

5371
04:49:03,793 --> 04:49:14,203
FOR TRANSITION OF CARE.

5372
04:49:19,842 --> 04:49:22,712
THESE ARE MOST THE ELEMENTS WE 

5373
04:49:22,712 --> 04:49:25,014
DISCUSSED IN THE CONSENSUS 

5374
04:49:25,014 --> 04:49:25,248
PROCESS.

5375
04:49:25,248 --> 04:49:26,916
THE ONES IN GREEN REACHED 

5376
04:49:26,916 --> 04:49:28,418
CONSENSUS AND THE ONES IN RED 

5377
04:49:28,418 --> 04:49:29,952
ARE NOT.

5378
04:49:29,952 --> 04:49:33,456
YOU CAN SEE IT INCLUDES A LOT OF

5379
04:49:33,456 --> 04:49:33,956
PERTINENT INFORMATION.

5380
04:49:33,956 --> 04:49:38,995
SOME OF WHAT THE ELEMENTS ARE 

5381
04:49:38,995 --> 04:49:41,130
EASILY PUT INTO THE E.H.R. AS 

5382
04:49:41,130 --> 04:49:43,433
DISCREET DATA ELEMENTS AND SOME 

5383
04:49:43,433 --> 04:49:46,235
REQUIRE MORE FREE TEXT AND 

5384
04:49:46,235 --> 04:49:47,236
NARRATIVE BOXES WHICH MAKES 

5385
04:49:47,236 --> 04:49:49,038
THINGS HARDER IN TERMS OF DATA 

5386
04:49:49,038 --> 04:49:50,807
COLLECTION OR POPULATING OR 

5387
04:49:50,807 --> 04:50:01,117
CARRYING FORWARD.

5388
04:50:05,321 --> 04:50:09,859
AND LABS ON RECORD, VITAL SIGNS 

5389
04:50:09,859 --> 04:50:11,761
AND HYDROXYUREA LABS AND DISEASE

5390
04:50:11,761 --> 04:50:13,796
MODIFYING THERAPY SECTION, GENE 

5391
04:50:13,796 --> 04:50:15,598
THERAPY OR TRANSPLANT 

5392
04:50:15,598 --> 04:50:17,934
INFORMATION FOR PATIENTS WHO HAD

5393
04:50:17,934 --> 04:50:19,869
UNDER GONE TRANSFORMATIVE 

5394
04:50:19,869 --> 04:50:20,503
THERAPY.

5395
04:50:20,503 --> 04:50:21,771
THERE WAS SPECIFIC TRANSFUSION 

5396
04:50:21,771 --> 04:50:25,808
ELEMENTS IMPORTANT TO CONVEY AND

5397
04:50:25,808 --> 04:50:28,111
A VARIETY OF COMPLICATIONS SOME 

5398
04:50:28,111 --> 04:50:34,450
OF WHICH SHOWN HERE AND SPACES 

5399
04:50:34,450 --> 04:50:39,155
FOR THE ACUTE PAIN PLAN AND 

5400
04:50:39,155 --> 04:50:41,257
INPATIENT ADMISSIONS FOR 

5401
04:50:41,257 --> 04:50:46,863
PATIENTS WITH NUANCED THINGS TO 

5402
04:50:46,863 --> 04:50:49,866
CONVEY.

5403
04:50:49,866 --> 04:50:58,908
AND MEDICATIONS INCLUDED.

5404
04:50:58,908 --> 04:51:01,844
HOW DO YOU CAPTURE THE 

5405
04:51:01,844 --> 04:51:03,579
INFORMATION IN THE E.H.R.?

5406
04:51:03,579 --> 04:51:06,082
THIS IS ONE OF MANY WAYS AND 

5407
04:51:06,082 --> 04:51:07,784
MANY HAVE IMPLEMENTED SOLUTIONS 

5408
04:51:07,784 --> 04:51:08,618
SIMILAR OR DIFFERENT IN YOUR 

5409
04:51:08,618 --> 04:51:12,288
E.H.R.s BUT THE IDEA BEHIND THIS

5410
04:51:12,288 --> 04:51:15,158
PROJECT WITH THE NATIONAL 

5411
04:51:15,158 --> 04:51:19,762
ALLIANCE IS TO COLLABORATE NOT 

5412
04:51:19,762 --> 04:51:23,065
DUPE  -- DUPLICATE AND CREATING 

5413
04:51:23,065 --> 04:51:24,801
THE TOOLS IN ANY E.H.R. WE CAN 

5414
04:51:24,801 --> 04:51:25,735
REFINE THEM AND DISTRIBUTE THEM 

5415
04:51:25,735 --> 04:51:35,778
TO OUR CENTERS AND CREATE MORE 

5416
04:51:35,778 --> 04:51:40,116
UNIFORMITY.

5417
04:51:40,116 --> 04:51:42,051
THERE'S ONE THE THINGS YOU CAN 

5418
04:51:42,051 --> 04:51:43,453
USE TO CHART INFORMATION 

5419
04:51:43,453 --> 04:51:46,022
CARRYING FORWARD THROUGH 

5420
04:51:46,022 --> 04:51:48,658
DIFFERENT ENCOUNTERS AND THE 

5421
04:51:48,658 --> 04:51:49,725
DIFFERENT TABS ON THE SIDE 

5422
04:51:49,725 --> 04:51:51,694
REFLECT THE DIFFERENT SECTIONS 

5423
04:51:51,694 --> 04:51:54,430
IN THE E.H.R. TRANSITION HANDOFF

5424
04:51:54,430 --> 04:51:54,664
ELEMENT.

5425
04:51:54,664 --> 04:51:58,000
THIS HAS INFORMATION ABOUT 

5426
04:51:58,000 --> 04:51:58,668
RESEARCH PARTICIPATION REFERRING

5427
04:51:58,668 --> 04:52:04,307
CLINICIANS WHETHER OR NOT THEY 

5428
04:52:04,307 --> 04:52:07,743
COMPLETED A TRANSITION 

5429
04:52:07,743 --> 04:52:11,747
CURRICULUM THE DISEASE MODIFYING

5430
04:52:11,747 --> 04:52:15,918
THERAPIES AND SPECIFIC DOSES AND

5431
04:52:15,918 --> 04:52:21,224
DETAILS OF MEDICATIONS AS WELL 

5432
04:52:21,224 --> 04:52:28,564
AS PAIN HISTORY.

5433
04:52:28,564 --> 04:52:33,035
AND MATRIX FOR THE SICKLE CELL 

5434
04:52:33,035 --> 04:52:34,437
COMPLICATIONS AND MARK OFF THE 

5435
04:52:34,437 --> 04:52:35,338
ONES PATIENTS EXPERIENCED WITH 

5436
04:52:35,338 --> 04:52:44,447
DATES AND DETAILS.

5437
04:52:44,447 --> 04:52:46,115
THAT GOES IN THE FLOW SHEET TO 

5438
04:52:46,115 --> 04:52:47,984
REVIEW DURING ANY ENCOUNTER.

5439
04:52:47,984 --> 04:52:50,820
THIS IS THE WAY OUR ED 

5440
04:52:50,820 --> 04:52:53,155
CLINICIANS CAN ACCESS THE 

5441
04:52:53,155 --> 04:52:54,257
PATIENT PAIN PLANS AND THAT'S 

5442
04:52:54,257 --> 04:52:56,292
HOW WE STARTED TO DISSEMINATE 

5443
04:52:56,292 --> 04:52:57,493
THAT INFORMATION.

5444
04:52:57,493 --> 04:53:03,866
YOU CAN ALSO TRACK SOME OF THESE

5445
04:53:03,866 --> 04:53:09,805
VALUES OVER TIME.

5446
04:53:09,805 --> 04:53:11,908
YOU CAN USE THIS TO POPULATE THE

5447
04:53:11,908 --> 04:53:14,477
CLINIC NOTE AND COMES UP AS A 

5448
04:53:14,477 --> 04:53:16,345
SPECIFIC SICKLE CELL CLINIC NOTE

5449
04:53:16,345 --> 04:53:18,014
WHERE PRIOR MY NOTES WENT IN AS 

5450
04:53:18,014 --> 04:53:19,415
PRIMARY CARE AND SEPARATES THEM 

5451
04:53:19,415 --> 04:53:21,284
OUT AND ALLOWS CLINICIANS TO 

5452
04:53:21,284 --> 04:53:23,152
LOOK AT THEM SPECIFICALLY FOR 

5453
04:53:23,152 --> 04:53:28,457
THE SICKLE CELL PAIN PLAN.

5454
04:53:28,457 --> 04:53:34,530
THAT THE HOW WE ADDRESSED IT IN 

5455
04:53:34,530 --> 04:53:35,264
SERNER.

5456
04:53:35,264 --> 04:53:39,635
AND IN EPIC WE CREATED A SMART 

5457
04:53:39,635 --> 04:53:40,770
FORM FOR SICKLE CELL DISEASE.

5458
04:53:40,770 --> 04:53:44,106
ALL THE ELEMENTS HERE YOU SEE 

5459
04:53:44,106 --> 04:53:47,843
ARE INDIVIDUAL DATA ELEMENTS IN 

5460
04:53:47,843 --> 04:53:50,379
A SMART FORM.

5461
04:53:50,379 --> 04:53:52,114
EACH CLINICIAN UPDATES THE SMART

5462
04:53:52,114 --> 04:53:57,887
FORM AND USES IT TO POPULATE 

5463
04:53:57,887 --> 04:54:08,097
THEIR NOTE.

5464
04:54:08,798 --> 04:54:10,299
THIS AVAILABLE IN EPIC AS A 

5465
04:54:10,299 --> 04:54:10,933
WHOLE BASED ON THE MOST RECENT 

5466
04:54:10,933 --> 04:54:17,773
UPDATE.

5467
04:54:17,773 --> 04:54:24,647
INSTITUTIONS HAVE TO OPT IN AND 

5468
04:54:24,647 --> 04:54:27,116
UPLOAD THE SMART FORM BUT IT'S 

5469
04:54:27,116 --> 04:54:28,618
THERE AND THERE MAY BE TWEAKING 

5470
04:54:28,618 --> 04:54:30,353
SITES HAVE TO DO FOR THE DATA 

5471
04:54:30,353 --> 04:54:31,687
ELEMENTS THAT MAY BE SLIGHTLY 

5472
04:54:31,687 --> 04:54:34,590
DIFFERENT IN YOUR VERSION OF 

5473
04:54:34,590 --> 04:54:34,890
EPIC.

5474
04:54:34,890 --> 04:54:38,094
SO THIS THEN USES THOSE SAME 

5475
04:54:38,094 --> 04:54:42,365
TRANSITION ELEMENTS TO CREATE A 

5476
04:54:42,365 --> 04:54:43,532
SENDING NOTE OR PEDIATRIC NOTE.

5477
04:54:43,532 --> 04:54:45,801
ONE THING WE'RE LOOKING TO WORK 

5478
04:54:45,801 --> 04:54:50,439
OUT IS HOW TO DEAL WITH THE 

5479
04:54:50,439 --> 04:54:51,607
PROTECTED HEALTH INFORMATION 

5480
04:54:51,607 --> 04:54:55,878
ELEMENTS FOR MINORS OR 

5481
04:54:55,878 --> 04:54:59,849
ADOLESCENTS RELATED TO OBSTETRIC

5482
04:54:59,849 --> 04:55:01,951
HISTORY OR SEXUALLY TRANSMITTED 

5483
04:55:01,951 --> 04:55:02,885
DISEASE HISTORY OR OTHER ITEMS 

5484
04:55:02,885 --> 04:55:06,322
OFTEN PROTECTED.

5485
04:55:06,322 --> 04:55:09,392
WE WANT TO BE COGNIZANT AND 

5486
04:55:09,392 --> 04:55:11,427
STILL RELAY INFORMATION.

5487
04:55:11,427 --> 04:55:14,263
WHEN WE BUILT THE TEMPLATE WE 

5488
04:55:14,263 --> 04:55:16,899
DIDN'T INCLUDE THEM TO AVOID 

5489
04:55:16,899 --> 04:55:18,034
INFORMATION BEING INADVERTENTLY 

5490
04:55:18,034 --> 04:55:19,835
RELAYED OR DISSEMINATED TO 

5491
04:55:19,835 --> 04:55:30,379
PEOPLE TO WHOM IT SHOULD NOT GO.

5492
04:55:37,453 --> 04:55:38,587
THIS IS INFORMATION AVAILABLE 

5493
04:55:38,587 --> 04:55:46,896
FOR PATIENTS.

5494
04:55:46,896 --> 04:55:48,898
THE CLINICAL TEAMS AT OUR 

5495
04:55:48,898 --> 04:55:51,567
PEDIATRIC AND ADULT SICKLE CELL 

5496
04:55:51,567 --> 04:55:54,704
CENTERS BEGAN USING THESE AND 

5497
04:55:54,704 --> 04:55:56,706
WE'VE DONE REVISION BASED ON 

5498
04:55:56,706 --> 04:55:58,908
CLINICIAN FEEDBACK AND 

5499
04:55:58,908 --> 04:55:59,575
EXPERIENCING THINGS THAT WEREN'T

5500
04:55:59,575 --> 04:56:06,215
IN THERE OR NEEDED TO BE DONE 

5501
04:56:06,215 --> 04:56:06,716
DIFFERENTLY.

5502
04:56:06,716 --> 04:56:13,255
WE ARE NOW GOING TO AND AFTER WE

5503
04:56:13,255 --> 04:56:15,257
TAKE THAT WE ARE ABLE TO 

5504
04:56:15,257 --> 04:56:18,060
DISSEMINATE THE CODING THE FORMS

5505
04:56:18,060 --> 04:56:19,695
TO OTHER SITES TO CONTINUE TO 

5506
04:56:19,695 --> 04:56:22,531
USE AND IMPROVE THEM AND THEN I 

5507
04:56:22,531 --> 04:56:25,401
THINK LIKE MANY OF YOU KNOW THE 

5508
04:56:25,401 --> 04:56:28,904
END STAGE GOAL IS TO CREATE A 

5509
04:56:28,904 --> 04:56:31,140
NOTE OR SYSTEM WHERE THIS 

5510
04:56:31,140 --> 04:56:32,508
INFORMATION CAN BE TRANSFERRED 

5511
04:56:32,508 --> 04:56:34,877
ACROSS E.H.R.s SO THAT 

5512
04:56:34,877 --> 04:56:35,544
REGARDLESS OF WHETHER A PATIENT 

5513
04:56:35,544 --> 04:56:40,516
IS SEEN IN EPIC OR SERNER OR 

5514
04:56:40,516 --> 04:56:44,887
ANOTHER E.H.R. PLATFORM YOU'RE 

5515
04:56:44,887 --> 04:56:46,889
ABLE TO CONVEY THIS DATA SO IT'S

5516
04:56:46,889 --> 04:56:53,629
NOT LOST.

5517
04:56:53,629 --> 04:56:55,831
I HAVE TO THANK THE TEAMS AND 

5518
04:56:55,831 --> 04:57:02,004
THOSE WHO CODED ALL THIS WORK 

5519
04:57:02,004 --> 04:57:06,575
AND CELT WITH MYSELF AND ME IS 

5520
04:57:06,575 --> 04:57:08,277
INFORMATICS CURIOUS BUT NOT VERY

5521
04:57:08,277 --> 04:57:09,578
SKILLED AND WERE HELPFUL AND THE

5522
04:57:09,578 --> 04:57:11,547
NATIONAL ALLIANCE FOR THE WORK 

5523
04:57:11,547 --> 04:57:13,249
AND TRANSITION TEMPLATE TEAM.

5524
04:57:13,249 --> 04:57:15,384
THANK YOU SO MUCH FOR ALLOWING 

5525
04:57:15,384 --> 04:57:21,924
ME TO SHARE THIS WITH YOU TODAY.

5526
04:57:21,924 --> 04:57:23,692
>> THANK YOU SO MUCH AND
WE'RE 

5527
04:57:23,692 --> 04:57:34,170
HAPPY TO TAKE ANY QUESTIONS.

5528
04:57:37,540 --> 04:57:39,842
ANY QUESTIONS ONLINE?

5529
04:57:39,842 --> 04:57:42,578
NO QUESTIONS IN PERSON?

5530
04:57:42,578 --> 04:57:43,879
I GUESS YOU'VE BEEN CLEAR.

5531
04:57:43,879 --> 04:57:54,390
>> THERE WAS A QUESTION
ABOUT 

5532
04:57:55,825 --> 04:57:57,927
VACCINES AND WHETHER IT NEEDED 

5533
04:57:57,927 --> 04:57:59,728
TO BE TRACKED BY THE ADULT 

5534
04:57:59,728 --> 04:58:00,396
SICKLE CELL PROGRAM.

5535
04:58:00,396 --> 04:58:02,531
THERE WAS LOTS OF DISCUSSION 

5536
04:58:02,531 --> 04:58:06,202
ABOUT THE NEED FOR ONGOING 

5537
04:58:06,202 --> 04:58:09,972
PNEUMOCOCCAL VACCINES IN OUR 

5538
04:58:09,972 --> 04:58:10,272
POPULATION.

5539
04:58:10,272 --> 04:58:11,173
THE BASIC RECOMMENDATION IS TO 

5540
04:58:11,173 --> 04:58:14,376
STICK WITH THE CDC GUIDELINE.

5541
04:58:14,376 --> 04:58:15,878
>> GREAT.

5542
04:58:15,878 --> 04:58:17,012
THANK YOU AGAIN FOR 

5543
04:58:17,012 --> 04:58:20,916
ACCOMMODATING AND COMING IN 

5544
04:58:20,916 --> 04:58:21,884
EARLY.

5545
04:58:21,884 --> 04:58:25,321
SO WE GIVE 20 MINUTES BACK TO 

5546
04:58:25,321 --> 04:58:27,189
EVERYBODY FOR THE DAY AND THANK 

5547
04:58:27,189 --> 04:58:31,227
YOU AGAIN FOR COMING TO THIS 

5548
04:58:31,227 --> 04:58:32,528
WONDERFUL SICKLE CELL MEETING 

5549
04:58:32,528 --> 04:58:35,764
FOR THE LAST THREE DAYS.

5550
04:58:35,764 --> 04:58:38,334
WE'VE TOUCHED FROM BONE MARROW 

5551
04:58:38,334 --> 04:58:40,803
TRANSPLANT TO GENE THERAPY TO 

5552
04:58:40,803 --> 04:58:44,540
SYSTEMS BIOLOGY AND ALL THE 

5553
04:58:44,540 --> 04:58:47,776
NETWORKS AND ASH UPDATES AND CDC

5554
04:58:47,776 --> 04:58:51,413
UPDATES AND LOOK FORWARD TO HOUR

5555
04:58:51,413 --> 04:58:52,781
NEXT YEAR'S ANNUAL SICKLE CELL 

5556
04:58:52,781 --> 04:58:53,015
MEETING.

5557
04:58:53,015 --> 04:59:03,392
UNTIL THEN, GOOD-BYE.