RARE-X Sponsored Research Projects
The need for effective treatments is too urgent to not embrace more open and collaborative drug development models
Contact UsThe RARE-X platform provides the foundation for robust rare disease research, with its standardized patient-reported and patient-provided data collection. RARE-X can be extended for sponsored programs, enabling deeper data collection for individual disorders, or generating insights based on specific questions of interest.
Disease Community Insights
Develop insights through custom surveys or disease-specific measures, which extend the already rich data collection on RARE-X. Burden of Illness studies can also be developed to support regulatory needs.
Research Consortia
Smaller patient populations in rare disease necessitate new, collaborative models. Multi-stakeholder research consortia including industry, academia and patients can drive rapid progress with shared goals and united efforts.
Natural History Studies
Capture longitudinal patient-reported data in RARE-X as part of a natural history study. Patient-reported and clinical data can be aggregated and shared with researchers through the RARE-X Analytics Platform.
Active Projects
Colorado Children’s Neurogenetics Clinic
Facilitating Open Science for Progress
with Patient-Driven Data
Structured Data
Platform for collecting structured patient data (including PRO, molecular, and study data)
Accelerating Research
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
