The document discusses the Alzheimer's Disease Neuroimaging Initiative (ADNI), a large collaborative research study involving the NIH, academic researchers, and private companies. ADNI was established to standardize data collection and share all data publicly to advance the development of biomarkers for Alzheimer's. By pooling resources and data across institutions, ADNI has led to significant progress in early detection techniques and understanding of Alzheimer's disease after decades of failures under the traditional research model with each group working independently.

1. 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]
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2. 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
INFO@SOLVABLE.CO
SOLVABLE HEALTH HAS NOT WORKED WITH
OR CLAIMED INFLUENCE ON THE ADNI.

3. “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

4. “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

5. “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

6. “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

7. “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

8. “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

9. “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

10. “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

11. COLLABORATIVE FUNDING
• $40M: NIH/NIA
• $1.5M: CIHR
• $50M: COMPANIES FOUNDATIONS
PUBLIC-PRIVATE COOPERATION

12. 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

13. 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

14. “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

15. 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

16. 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.

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