adni: a health research network architected for collaboration
TRANSCRIPT
PHOTO: “SEVDA CORDIER-DIRIKOC, BIOALTERNATIVES, FRANCE” © JANUARY 2010 GE HEALTHCARE, USED UNDER A CREATIVE COMMONS ATTRIBUTION 2.0 GENERIC
LEARNING FROM ADNI 1 & ADNI 2
A HEALTH RESEARCH NETWORK ARCHITECTED FOR COLLABORATION[MEDIA EXTRACTIONS] SOLVABLEHEALTH.COM @SOLVABLEHEALTH
HEALTH
THESE SLIDES WERE INSPIRED BY ADNI AS A MODEL FOR PUBLIC-PRIVATE HEALTH RESEARCH COLLABORATION.
WE WELCOME NEW QUOTES AND RESEARCH INSIGHTS. ALL CONTRIBUTIONS WILL BE ATTRIBUTED. PLEASE SEND TO [email protected]
SOLVABLE HEALTH HAS NOT WORKED WITH OR CLAIMED INFLUENCE ON THE ADNI.
“WE FACE A NATIONAL EPIDEMIC OF ALZHEIMER’S DISEASE UNLESS THERE ARE SIGNIFICANT ADVANCES VERY SOON THAT MAKE POSSIBLE EARLY DETECTION OF THE DISEASE AND CREATE EFFECTIVE TREATMENTS. WE DON’T HAVE THESE THINGS NOW, AND MAINTAINING THE STATUS QUO IN RESEARCH METHODS AND FUNDING WILL NOT GIVE US THESE ANSWERS ANYTIME SOON.”
– DR. WILLIAM THIES, ALZHEIMER’S ASSOCIATION CHIEF MEDICAL AND SCIENTIFIC OFFICER, FNIH PRESS RELEASE, OCTOBER 21, 2010
“THE PROBLEM IN THE FIELD WAS THAT YOU HAD MANY DIFFERENT SCIENTISTS IN MANY DIFFERENT UNIVERSITIES DOING THEIR OWN RESEARCH WITH THEIR OWN PATIENTS AND WITH THEIR OWN METHODS...DIFFERENT PEOPLE USING DIFFERENT METHODS ON DIFFERENT SUBJECTS IN DIFFERENT PLACES WERE GETTING DIFFERENT RESULTS, WHICH IS NOT SURPRISING. WHAT WAS NEEDED WAS TO GET EVERYONE TOGETHER AND TO GET A COMMON DATA SET.” – DR. MICHAEL W. WEINER , SHARING OF DATA LEADS TO PROGRESS
ON ALZHEIMER’S, THE NEW YORK TIMES, GINA KOLATA, AUGUST 12, 2010
“COMPANIES WERE CAUGHT IN A PRISONER’S DILEMMA...THEY ALL WANTED TO MOVE THE FIELD FORWARD, BUT NO ONE WANTED TO TAKE THE RISKS OF DOING IT...THIS ONE MAKES SENSE. THE DEVELOPMENT OF RELIABLE AND VALID MEASURES OF ALZHEIMER’S DISEASE REQUIRES SUCH LARGE SCIENCE WITH SUCH LIMITED RETURNS ON THE INVESTMENT THAT IT WAS IN NO ONE COMPANY’S INTEREST TO PURSUE IT.” – DR. JASON KARLAWISH, SHARING OF DATA LEADS TO PROGRESS
ON ALZHEIMER’S, THE NEW YORK TIMES, GINA KOLATA, AUGUST 12, 2010
“MAYBE THIS WAS IMPORTANT ENOUGH TO GET PEOPLE TO WORK TOGETHER AND COORDINATE IN A WAY THAT HADN’T BEEN POSSIBLE BEFORE. THE IDEA, DR. BUCKHOLTZ SAID, WAS THAT THE GOVERNMENT’S NATIONAL INSTITUTES OF HEALTH ‘COULD SERVE AS AN HONEST BROKER BETWEEN THE PHARMACEUTICAL INDUSTRY AND ACADEMIA.’” – SHARING OF DATA LEADS TO PROGRESS ON ALZHEIMER’S, THE
NEW YORK TIMES, GINA KOLATA, AUGUST 12, 2010
“IF THEY [NEIL BUCKHOLTZ & WILLIAM POTTER] COULD CONVINCE THE PLAYERS THAT NO ONE – NO MATTER HOW GREAT THE INDIVIDUAL PAYOFF – COULD DO IT ALONE, THEN MAYBE THEY COULD GET EVERYONE TO DO IT TOGETHER. FROM THAT CONVERSATION WAS BORN A CONSORTIUM BETWEEN THE NIH, INDUSTRY AND ACADEMIA CALLED ADNI”
– INNOVATION GENERATION: HOW TO PRODUCE CREATIVE AND USEFUL SCIENTIFIC IDEAS, ROBERTA B. NESS, 2012
“IT’S NOT SCIENCE THE WAY MOST OF US HAVE PRACTICED IT IN OUR CAREERS. BUT WE ALL REALIZED THAT WE WOULD NEVER GET BIOMARKERS UNLESS ALL OF US PARKED OUR EGOS AND INTELLECTUAL-PROPERTY NOSES OUTSIDE THE DOOR AND AGREED THAT ALL OF OUR DATA WOULD BE PUBLIC IMMEDIATELY.” – DR. JOHN Q. TROJANOWSKI, SHARING OF DATA LEADS TO
PROGRESS ON ALZHEIMER’S, THE NEW YORK TIMES, GINA KOLATA, AUGUST 12, 2010
“THE KEY TO THE ALZHEIMER’S PROJECT WAS AN AGREEMENT AS AMBITIOUS AS ITS GOAL: NOT JUST TO RAISE MONEY, NOT JUST TO DO RESEARCH ON A VAST SCALE, BUT ALSO TO SHARE ALL THE DATA, MAKING EVERY SINGLE FINDING PUBLIC IMMEDIATELY, AVAILABLE TO ANYONE WITH A COMPUTER ANYWHERE IN THE WORLD.”
– SHARING OF DATA LEADS TO PROGRESS ON ALZHEIMER’S, THE NEW YORK TIMES, GINA KOLATA, AUGUST 12, 2010
“NO ONE WOULD OWN THE DATA. NO ONE COULD SUBMIT PATENT APPLICATIONS, THOUGH PRIVATE COMPANIES WOULD ULTIMATELY PROFIT FROM ANY DRUGS OR IMAGING TESTS DEVELOPED AS A RESULT OF THE EFFORT.”
– SHARING OF DATA LEADS TO PROGRESS ON ALZHEIMER’S, THE NEW YORK TIMES, GINA KOLATA, AUGUST 12, 2010
COLLABORATIVE FUNDING• $40M: NIH/NIA• $1.5M: CIHR• $50M: COMPANIES & FOUNDATIONS
PUBLIC-PRIVATE COOPERATION
ADVISORY BOARD (ISAB)• INDUSTRY SPONSORS APPOINT A REPRESENTATIVE FOR
OVERALL 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, AND
STANDARD OPERATING PROCEDURES
– AS ADNI TURNS FOUR, $64 MILLION DATA START ROLLING IN, ALZHEIMER RESEARCH FORUM, OCTOBER 14, 2008
PUBLIC-PRIVATE COOPERATION
REWRITING SCANNING PULSE SEQUENCES FOR THREE MAJOR MRI VENDORS & PERSUADING VENDORS TO INSTALL THEM
QUALITY CONTROL ON EVERY SCAN
– AS ADNI TURNS FOUR, $64 MILLION DATA START ROLLING IN, ALZHEIMER RESEARCH FORUM, OCTOBER 14, 2008
STANDARDIZATION
“COMPANIES AS WELL AS ACADEMIC RESEARCHERS ARE USING THE DATA. THERE HAVE BEEN MORE THAN 3,200 DOWNLOADS OF THE ENTIRE MASSIVE DATA SET AND ALMOST A MILLION DOWNLOADS OF THE DATA SETS CONTAINING IMAGES FROM BRAIN SCANS.”
MORE THAN 1,700 RESEARCHERS HAVE SIGNED UP FOR ADNI DATABASE ACCESS. – SHARING OF DATA LEADS TO PROGRESS ON ALZHEIMER’S, THE
NEW YORK TIMES, GINA KOLATA, AUGUST 12, 2010
100% ACCURATE SPINAL FLUID DIAGNOSIS TEST
EARLY DETECTION BRAIN IMAGING TECHNIQUE
170 PAPERS PUBLISHED
– SHARING OF DATA LEADS TO PROGRESS ON ALZHEIMER’S, THE NEW YORK TIMES, GINA KOLATA, AUGUST 12, 2010
AFTER DECADES OF FAILURES
ADNI IS A $140M MULTI-YEAR CLINICAL TRIAL INVOLVING MORE THAN 1,000 SUBJECTS AT 57 CENTERS IN THE UNITED STATES AND CANADA LED BY PRINCIPAL INVESTIGATOR DR. MICHAEL WEINER.
ITS MISSION IS TO ESTABLISH BIOMARKERS FOR THE PROGRESSION OF ALZHEIMER’S DISEASE BASED ON MARKERS IN THE BRAIN, SPINAL FLUID AND BLOOD.
