Xcelerate RARE

Xcelerate Rare

Getting data to the best people

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 Challenge will launch to researchers on May 31, focused on rare pediatric neurodevelopmental diseases. So between now and March 30th, patients and families affected by these conditions will be encouraged to enter health care information into the data collection program so researchers can start making discoveries!

RARE-X anticipates that 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. Ultimately, the patient groups with the most available data will get the most out of the Xcelerate RARE.

How to participate?

If you’re a Patient… 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. Therefore, it will be important for families battling rare pediatric neurodevelopmental diseases to complete as many surveys as possible, especially Level 2 surveys and the Health & Development Survey by March 30, 2023, and upload genetic test reports by February 28, 2023 (Rare Disease Day).


If you’re an Academic Researcher or Data Scientist…Xcelerate RARE offers your research team access to unique rare disease patient data and offers an opportunity for teams to work on important problems facing rare disease families in a fun, structured environment.  Winning research teams may have opportunities to obtain grant funding or to co-publish the results of their analyses at the conclusion of the challenge. Interested researchers can sign up for updates below. 


If you’re a Researcher working in a Biotech or Pharmaceutical Company… 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 can sign up for updates below.

Are you a researcher interested in participating in Xcelerate RARE?

Sign-up by clicking on the link below for updates.





Sanford Health

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


As a patient, how do I sign up? 

As a researcher, how do I sign up?

Where can I learn more about sponsorship opportunities?

When will the data be locked?

Is there an award or prize money at stake?

As a researcher, how will I access the data?

How much data is available, and for what rare diseases?

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