We will dis­cuss oppor­tu­ni­ties and chal­lenges aris­ing from this core ini­tia­tive, spear­headed by One Mind for Research, to pro­vide open access to vast amounts of data and help close the gap between basic research and health outcomes. - Chair: Alvaro Fer­nan­dez, CEO of SharpBrains - Pete Chiarelli, CEO of One Mind for Research, U.S. Army Gen­eral (Ret)

1. Building Up the Apollo
Brain Data Exchange Portal

2. Chaired by: Alvaro Fernandez,
CEO of Sharp Brains,
YGL Class of 2012
Pete Chiarelli,
CEO of One Mind for Research,
U.S. Army General (Ret)
Building Up the Apollo
Brain Data Exchange Portal

3. www.1mind4research.org

6. TRAUMATIC BRAIN INJURY
RESEARCH FUNDING PER PATIENT
DISEASE # ANNUAL CASES RESEARCH $ $ PER PERSON
WEST NILE VIRUS 13,507 $37 Million $2,739
PARKINSON’S DISEASE 56,280 $230 Million $4,086
HIV/AIDS 41,365 $271 Million $6,551
PEDIATRIC CANCER 10,412 $70 Million $6,723
SPINAL CORD INJURIES 12,100 $89 Million $7,355
ALZHEIMER’S DISEASE 28,140 $647 Million $22,992
ALL TBI CASES* 3.4 MILLION* $80 Million $24
The annual incidence for TBI far exceeds any other disease area,
yet it receives substantially less research funding per capita.
TBI
QUICK
FACTS
• TBI is the #1 CAUSE of DEATH & DISABILITY among CHILDREN.
• 5.3 MILLION Americans live with disabilities from TBI.
• 50,000 Americans DIE EVERY YEAR from TBI.
*New, unpublished number of cases. Even this is believed to be low. Some estimates are as high as 21M per year.
SHOULDN’T WE BE DOING MUCH, MUCH MORE?

8. Now, tell us what the picture is…

9. Without seeing the picture on the box…

10. .

11. 11
GEMINI PROGRAM:
TBI & PTS KNOWLEDGE NETWORK
BIOSENSORS
PLATFORMS
Imaging, ‘OMICS
DATA COLLECTION
BM Large-scale across
domains
DATA STANDARDS
Ontologies
CDE’s
Curation
Expert nets
Repositories
DATA
BASES
OTHER
PROGRAMS
• Biorepositories
• EMR
• Academic
• Industry
TRANSMART
DATA MINING
APOLLO
DATA EXCHANGE
PORTAL
Disease Modeling**
(Simulations)
MOBILE HEALTH
Healthcare
Practice Models
Educational
Programs
BEST PRACTICES
CPG’s
INTEGRATED
SOLUTIONS
Dx-Rx-Devices-Other
TRANSITIONAL TOOLS & MODELS
• IPSC
• Animal Models
• PoC/Adaptive Design
BASIC SCIENCE & PRIORS
The science only matters if PATIENTS benefit… TODAY.
• Preventative
• Curative
• Nutritional
• Exercise
Goal:
Better Diagnostics &
Treatments for TBI & PTS

12. We will never see the BIG PICTURE unless we share…

13. GEMINI OVERVIEW
• To discover new diagnostics and better treatments for TBI
and PTS, we need very large integrated datasets to achieve
sample size/power for Biomarker discovery (e.g. genetics)
and patient stratification/classification
• This will require data sharing models across institutions –
multiple successful precedents exist
– Data policies should foster both team science and investment
– Data should become available to scientists generally, subject to
appropriate terms of use
– Ensure that patients are treated ethically while creating datasets
that may be used broadly
– Create a publication policy that properly acknowledges all
participants

14.  There is no central data repository for researchers
to share -- even if they want to.
 Often there are no data standards and when they
do exist they are disease specific and not compliant
with standards accepted by the FDA (CDISC). The
result is when research makes progress, we cannot
quickly move from the bench (basic research) to the
bedside (better treatments).
 Researchers do not execute standardized protocols
nor do they identify and execute workflows.
WHY ONE MIND?

15. 50 IN
10

16. www.1mind4research.org

17. Q&A
10 minutes
(Included in session
recording)

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