The primary challenge influencing the speed and productivity of innovation in rare disease is cost and the lack of reliable or open access to comprehensive patient data.
This is because…
The data exists, but is captive within a silo, institutional or company-owned, because of institutional / technological constraints, or is being held for exclusive commercial purpose
The data may exist, but not in a structure/form where it is available, visible or useful to researchers or patient communities.
The data doesn’t yet exist (because patients can’t access genomic or other testing, there is not a way to effectively collect patient-reported information, etc.).
To address these needs and challenges RARE-X is building a platform that breaks down barriers to access ‘the right data’ while supporting the open sharing of this data at ‘the right time’, to accelerate advancements in rare disease understanding and therapy development.
The RARE-X technology platform will include:
The Technology Platform of RARE-X includes:
Federated Data Capabilities and a Rare Disease Federated Data Library
Data Collection Platform and portal development built to scale
Federating Data has been desired for years within the research community. The reason it hasn’t happened yet is that it is hard to do, and industry has been trying to monetize it. Bringing forward an open federated data sharing effort is the right thing to do for rare disease patients and researchers, and having it be driven by a patient focused non-profit is the right approach. This will be transformative.John Wilbanks, Chief Commons Officer, Sage Bionetworks