ADNI: A Health Research Network Architected for Collaboration
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ADNI: A Health Research Network Architected for Collaboration

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This presentation looks at the unprecedented public-private health research collaboration - The Alzheimer’s Disease Neuroimaging Initiative (ADNI). We were specifically interested in how the open ...

This presentation looks at the unprecedented public-private health research collaboration - The Alzheimer’s Disease Neuroimaging Initiative (ADNI). We were specifically interested in how the open data approach, wherein all the data and findings had to be made available on a public database, influenced collaboration and innovation. We've pulled extractions from various media and journal articles discussing how the collaboration took shape. We think there are strong lessons with ADNI that can inform the success of other health research networks.

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ADNI: A Health Research Network Architected for Collaboration Presentation Transcript

  • 1. PHOTO: “SEVDA CORDIER-DIRIKOC, BIOALTERNATIVES, FRANCE” © JANUARY 2010 GE HEALTHCARE, USED UNDER ACREATIVE COMMONS ATTRIBUTION 2.0 GENERICLEARNING FROMADNI 1 & ADNI 2A HEALTH RESEARCHNETWORK ARCHITECTEDFOR COLLABORATION[MEDIA EXTRACTIONS]SOLVABLEHEALTH.COM@SOLVABLEHEALTHHEALTH
  • 2. THESE SLIDES WERE INSPIRED BY ADNIAS A MODEL FOR PUBLIC-PRIVATE HEALTHRESEARCH COLLABORATION.WE WELCOME NEW QUOTES ANDRESEARCH INSIGHTS. ALL CONTRIBUTIONSWILL BE ATTRIBUTED. PLEASE SEND TOINFO@SOLVABLE.COSOLVABLE HEALTH HAS NOT WORKED WITHOR CLAIMED INFLUENCE ON THE ADNI.
  • 3. “WE FACE A NATIONAL EPIDEMIC OFALZHEIMER’S DISEASE UNLESS THEREARE SIGNIFICANT ADVANCES VERY SOONTHAT MAKE POSSIBLE EARLY DETECTIONOF THE DISEASE AND CREATE EFFECTIVETREATMENTS. WE DON’T HAVE THESETHINGS NOW, AND MAINTAINING THESTATUS QUO IN RESEARCH METHODSAND FUNDING WILL NOT GIVE US THESEANSWERS ANYTIME SOON.”– DR. WILLIAM THIES, ALZHEIMER’S ASSOCIATION CHIEF MEDICALAND SCIENTIFIC OFFICER, FNIH PRESS RELEASE, OCTOBER 21, 2010
  • 4. “THE PROBLEM IN THE FIELD WAS THATYOU HAD MANY DIFFERENT SCIENTISTSIN MANY DIFFERENT UNIVERSITIES DOINGTHEIR OWN RESEARCH WITH THEIROWN PATIENTS AND WITH THEIR OWNMETHODS...DIFFERENT PEOPLE USINGDIFFERENT METHODS ON DIFFERENTSUBJECTS IN DIFFERENT PLACES WEREGETTING DIFFERENT RESULTS, WHICH ISNOT SURPRISING. WHAT WAS NEEDED WASTO GET EVERYONE TOGETHER AND TO GETA COMMON DATA SET.”– DR. MICHAEL W. WEINER , SHARING OF DATA LEADS TO PROGRESSON ALZHEIMER’S, THE NEW YORK TIMES, GINA KOLATA,AUGUST 12, 2010
  • 5. “COMPANIES WERE CAUGHT IN APRISONER’S DILEMMA...THEY ALL WANTEDTO MOVE THE FIELD FORWARD, BUTNO ONE WANTED TO TAKE THE RISKSOF DOING IT...THIS ONE MAKES SENSE.THE DEVELOPMENT OF RELIABLE ANDVALID MEASURES OF ALZHEIMER’SDISEASE REQUIRES SUCH LARGE SCIENCEWITH SUCH LIMITED RETURNS ON THEINVESTMENT THAT IT WAS IN NO ONECOMPANY’S INTEREST TO PURSUE IT.”– DR. JASON KARLAWISH, SHARING OF DATA LEADS TO PROGRESSON ALZHEIMER’S, THE NEW YORK TIMES, GINA KOLATA,AUGUST 12, 2010
  • 6. “MAYBE THIS WAS IMPORTANT ENOUGHTO GET PEOPLE TO WORK TOGETHERAND COORDINATE IN A WAY THAT HADN’TBEEN POSSIBLE BEFORE. THE IDEA,DR. BUCKHOLTZ SAID, WAS THAT THEGOVERNMENT’S NATIONAL INSTITUTESOF HEALTH ‘COULD SERVE AS AN HONESTBROKER BETWEEN THE PHARMACEUTICALINDUSTRY AND ACADEMIA.’”– SHARING OF DATA LEADS TO PROGRESS ON ALZHEIMER’S, THENEW YORK TIMES, GINA KOLATA, AUGUST 12, 2010
  • 7. “IF THEY [NEIL BUCKHOLTZ & WILLIAMPOTTER] COULD CONVINCE THE PLAYERSTHAT NO ONE – NO MATTER HOW GREATTHE INDIVIDUAL PAYOFF – COULD DOIT ALONE, THEN MAYBE THEY COULDGET EVERYONE TO DO IT TOGETHER.FROM THAT CONVERSATION WAS BORNA CONSORTIUM BETWEEN THE NIH,INDUSTRY AND ACADEMIA CALLED ADNI”– INNOVATION GENERATION: HOW TO PRODUCE CREATIVE ANDUSEFUL SCIENTIFIC IDEAS, ROBERTA B. NESS, 2012
  • 8. “IT’S NOT SCIENCE THE WAY MOST OFUS HAVE PRACTICED IT IN OUR CAREERS.BUT WE ALL REALIZED THAT WE WOULDNEVER GET BIOMARKERS UNLESS ALL OFUS PARKED OUR EGOS AND INTELLECTUAL-PROPERTY NOSES OUTSIDE THE DOOR ANDAGREED THAT ALL OF OUR DATA WOULD BEPUBLIC IMMEDIATELY.”– DR. JOHN Q. TROJANOWSKI, SHARING OF DATA LEADS TOPROGRESS ON ALZHEIMER’S, THE NEW YORK TIMES, GINA KOLATA,AUGUST 12, 2010
  • 9. “THE KEY TO THE ALZHEIMER’S PROJECTWAS AN AGREEMENT AS AMBITIOUS ASITS GOAL: NOT JUST TO RAISE MONEY,NOT JUST TO DO RESEARCH ON A VASTSCALE, BUT ALSO TO SHARE ALL THE DATA,MAKING EVERY SINGLE FINDING PUBLICIMMEDIATELY, AVAILABLE TO ANYONE WITHA COMPUTER ANYWHERE IN THE WORLD.”– SHARING OF DATA LEADS TO PROGRESS ON ALZHEIMER’S, THENEW YORK TIMES, GINA KOLATA, AUGUST 12, 2010
  • 10. “NO ONE WOULD OWN THE DATA. NO ONECOULD SUBMIT PATENT APPLICATIONS,THOUGH PRIVATE COMPANIES WOULDULTIMATELY PROFIT FROM ANY DRUGS ORIMAGING TESTS DEVELOPED AS A RESULTOF THE EFFORT.”– SHARING OF DATA LEADS TO PROGRESS ON ALZHEIMER’S, THENEW YORK TIMES, GINA KOLATA, AUGUST 12, 2010
  • 11. COLLABORATIVE FUNDING• $40M: NIH/NIA• $1.5M: CIHR• $50M: COMPANIES & FOUNDATIONSPUBLIC-PRIVATE COOPERATION
  • 12. ADVISORY BOARD (ISAB)• INDUSTRY SPONSORS APPOINT A REPRESENTATIVE FOROVERALL STUDY & CORES• MEET BY PHONE ONCE A MONTH• MEET IN-PERSON TWICE A YEAR• ADVISES ON DESIGN AND EXECUTION OF STUDIES• EXPANDED CSF SAMPLE PARTICIPATION: 1/5TH -> HALF• HELPED DEVELOP BEST PRACTICES, GUIDELINES, ANDSTANDARD OPERATING PROCEDURES– AS ADNI TURNS FOUR, $64 MILLION DATA START ROLLING IN, ALZHEIMER RESEARCHFORUM, OCTOBER 14, 2008PUBLIC-PRIVATE COOPERATION
  • 13. REWRITING SCANNING PULSE SEQUENCESFOR THREE MAJOR MRI VENDORS &PERSUADING VENDORS TO INSTALL THEMQUALITY CONTROL ON EVERY SCAN– AS ADNI TURNS FOUR, $64 MILLION DATA START ROLLING IN,ALZHEIMER RESEARCH FORUM, OCTOBER 14, 2008STANDARDIZATION
  • 14. “COMPANIES AS WELL AS ACADEMICRESEARCHERS ARE USING THE DATA.THERE HAVE BEEN MORE THAN 3,200DOWNLOADS OF THE ENTIRE MASSIVEDATA SET AND ALMOST A MILLIONDOWNLOADS OF THE DATA SETSCONTAINING IMAGES FROM BRAIN SCANS.”MORE THAN 1,700 RESEARCHERS HAVESIGNED UP FOR ADNI DATABASE ACCESS.– SHARING OF DATA LEADS TO PROGRESS ON ALZHEIMER’S, THENEW YORK TIMES, GINA KOLATA, AUGUST 12, 2010
  • 15. 100% ACCURATE SPINAL FLUIDDIAGNOSIS TESTEARLY DETECTION BRAIN IMAGINGTECHNIQUE170 PAPERS PUBLISHED– SHARING OF DATA LEADS TO PROGRESS ON ALZHEIMER’S, THENEW YORK TIMES, GINA KOLATA, AUGUST 12, 2010AFTER DECADES OF FAILURES
  • 16. ADNI IS A $140M MULTI-YEAR CLINICALTRIAL INVOLVING MORE THAN 1,000SUBJECTS AT 57 CENTERS IN THE UNITEDSTATES AND CANADA LED BY PRINCIPALINVESTIGATOR DR. MICHAEL WEINER.ITS MISSION IS TO ESTABLISH BIOMARKERSFOR THE PROGRESSION OF ALZHEIMER’SDISEASE BASED ON MARKERS IN THEBRAIN, SPINAL FLUID AND BLOOD.
  • 17. SOLVABLEHEALTH.COM@SOLVABLEHEALTHINFO@SOLVABLE.COHEALTH