Xcelerate RARE: Rare Disease Open Science Data Challenge

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The Xcelerate RARE: A Rare Disease Open Science Data Challenge is bringing together researchers and data scientists in a collaborative and competitive environment to make the best use of patient-provided data to solve big unknowns in healthcare.

The Open Science Data Challenge will launch to researchers May 17, and will focus on rare pediatric neurodevelopmental diseases.

We anticipate some of the outcomes of Xcelerate RARE might be:

  • Shortening the diagnostic odyssey with predicted diagnosis 
  • Identifying previously unrecognized symptoms associated with some of these rare diseases
  • Generating useful insights for advancing therapeutic research

Thousands of researchers worldwide – clinician-researchers, basic science researchers, and data scientists – will have the opportunity to study the data.

open science life cycle

How To Participate

Patients & Caregivers

It all starts with you and your de-identified health data from the Data Collection Program. The data collected in the program is openly available to researchers to advance therapeutic research. It is important for families battling rare pediatric neurodevelopmental diseases to complete as many surveys as possible, especially Level 2 and the Health & Development Survey, by March 30.

Academic Researchers & Data Scientists

Xcelerate RARE offers your research team access to rare disease patient data and an opportunity for teams to work on important problems facing rare disease families in a fun, structured environment. Winning teams may have opportunities to obtain grant funding or co-publish the results of their analyses at the conclusion of the challenge.

Researchers in Biotech / Pharma Companies

Xcelerate RARE offers you access to rare disease patient data in a pre-competitive, open environment. This data can help your team to better understand disease biological mechanisms to develop hypotheses to advance your therapeutic research pipeline. Interested researchers & teams can sign up for updates below.

Are you a researcher interested in participating in the Xcelerate RARE Open Science Data Challenge?

Sign up to receive updates & be notified when the challenge opens

Thank You To Our Sponsors & Partners



Planning Committee and Advisors

  • Fanny Sie, MS – Head of Artificial Intelligence & Digital Health, Roche
  • Mariam Ahmed, PMP, LSPO, CSM – Informatics Business Partner, Roche
  • Ravi Bhargava, MD – AIDH Partner / Medical Director One Roche Global, Roche
  • Joshua Hoang, MS – AI & Digital Healthcare Partner- Data Network Enablement, Roche
  • Kristoph Klein-Panneton, MS – Integrated Evidence Generation Lead, Roche
  • Ramanandan Prabhakaran- Roche
  • Andrew Nguyen, PhD –  Data Working Group Co-Chair, Section Head, Medical Informatics, AAIH, Roche
  • Jennifer Tjernagel, MS – Senior Project Manager, Simons Foundation
  • Joseph Geraci, PhD –  Chief Scientific Officer, Netramark
  • Anne O’Donnell-Luria, MD, PhD
  • Glenn Morrison, PhD
  • Harsha K. Rajasimha, PhD
  • Marinka Zitnik, PhD
  • Ran Naot
  • Elaine Johanson