Research
RARE-X Research Program
RARE-X enables the collection, structuring, and sharing of critical patient data at scale, to accelerate diagnosis, disease understanding, and development of future treatments and cures.
There are >10,000 rare diseases but fewer than 5% with an approved therapy. We need new, collaborative approaches to accelerate diagnosis and drug development, and speed the drug development process while dramatically driving down costs.
RARE-X is a nonprofit platform for collecting, structuring and sharing rare disease data. We partner with patient advocacy groups to make data collection accessible and easy for rare disease communities — and ensure that the data is high quality and ready to be used to accelerate research and drive forward urgently needed treatments.
RARE-X by the Numbers
Diseases in RARE-X
Patient Advocacy Groups
Countries
Key RARE-X Features
- Symptom-based data collection allows comprehensive disease characterization and cross-disorder research
- Expert working groups including patient advocates, clinicians and researchers select clinical outcome assessments that collect valuable data that is important to patients
- Robust data governance supports compliant international data collection
- Dynamic consent enables participants to update their data sharing preferences over time
RARE-X delivers
Structured Data
Platform for collecting structured patient data — including PRO, molecular, and study data
Open Platform
Open science platform to facilitate sharing of large high quality data sets to accelerate therapeutic research
Patient Engagement
Full-service ongoing patient engagement and program management service to enhance participation & long-term engagement
We partner closely with Patient Advocacy Groups to activate communities and collect rare disease data that is patient-owned. Empowering patient communities as data stewards benefits all rare disease stakeholders.
