Build­ing Up the Apollo Brain Data Exchange Por­tal

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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)

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Build­ing Up the Apollo Brain Data Exchange Por­tal

  1. 1. Building Up the Apollo Brain Data Exchange Portal
  2. 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. 3. www.1mind4research.org
  4. 4. 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 *New, unpublished number of cases.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?
  5. 5. Now, tell us what the picture is…
  6. 6. Without seeing the picture on the box…
  7. 7. .
  8. 8. 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
  9. 9. We will never see the BIG PICTURE unless we share…
  10. 10. 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
  11. 11.  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?
  12. 12. 50 IN 10
  13. 13. www.1mind4research.org
  14. 14. Q&A 10 minutes (Included in session recording)
  15. 15. Sponsors Partners Thank You for Joining Us!
  16. 16. To Learn More… Summit Recordings Book Market Report sharpbrains. com/book/ sharpbrains. com/summit/ sharpbrains.com /market-report/

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