PATIENTS' DATA POWERING PROGRESS

A-T Childrens Project

Overview

In June 2016, the A-T Children’s Project launched the Global A-T Family Data Platform, an effort overseen by A-T families to enable researchers and clinicians to mine large data sets and gain new insights about ataxia-telangiectasia. This rare and progressive neurodegenerative disease affects a variety of systems throughout the body. The data platform collects health, genomic, and other data types about children with the condition.

Though it is still in the early days, the data platform has already demonstrated the impact patient controlled data can have on accelerating new treatments for patients.

Special thanks to the following people and organizations for their input and collaboration.

  • Daniel Levine
  • A-T Children’s Project
  • Brad Margus
  • Jennifer Thornton
  • Anthony Philippakis, M.D., Ph.D.
  • The Broad Institute
  • Timothy Yu, M.D., Ph.D.
  • Ethan Perlstein, Ph.D
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