PATIENTS' DATA POWERING PROGRESS

RARE-X Data Platform and Services

Our work supports the gathering, structuring and sharing of critical patient data at scale, that will accelerate diagnosis, disease understanding, and development of future treatments and cures.

RARE-X is committed to transforming rare disease by ensuring that clinicians, researchers and drug developers have access to ‘The Right Data at the Right Time’, powered by patients’ data.

The RARE-X technology platform will include technology to support four key aims – Accelerating Diagnosis, Scaled and Efficient Patient Owned Data Collection, Increased Data Access, and Broad Analysis;

Future Access to Whole Genome Sequencing and robust Clinical Decision Support technology. New technologies are transforming clinical care and RARE-X will be partnering with leading organizations to ensure that clinicians have access to this pioneering technology that will;

  • Shortening Time to Diagnosis
  • Impacting Clinical Care
  • Improve Patient Outcomes

Patient Stewarded Data Collection – through a best in class, open, patient-owned data collection portal. Platform development through the pilot phase will work towards scale and ease of use for patients, utilizing standardized data modeling. Novel Service and support for patient advocates, including an emphasis on data governance, to ensure successful development and implementation (including access to a tech-enabled data Use Oversight System). Our goal:

  • Supporting thousands of patient stewarded data collection efforts in rare disease
  • Providing proper governance support and
  • Ensuring that the ‘Right Data’ that is fit-for-purpose, will be shared often and broadly to support research acceleration.

Federated Data Access – RARE-X is looking to build the largest rare disease federated data sharing library to support global collaboration. Utilizing an existing technology platform for broad sharing of data, developed at the Broad Institute of MIT and Harvard, and following federated data sharing principles, this platform will support broad data collaborations with strong security and data oversight. Our Goal:

  • Opening up new opportunities to share and access more data for querying
  • Providing the ability to access multi-stakeholder data sets, and support cross-disease research

Expanded Data Analysis – the federated data sharing platform will provide researchers with access to robust analytical tools and libraries of rare disease data. RARE-X will work to interconnect data sets and data collaborators from; patient data portals, academic research, clinical research, biopharma. This will be transformative for biomedical research

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