RARE-X Registry Setup
Stand up the Patient Registry program operationally — RARE-X integration + IRB + first cohort.
Stub — full content TBD
Per index mandate. Detailed plan added once incorporation complete and first patron secures the budget.
Plan (high-level)
- RARE-X partnership conversation + agreement
- STRC-specific intake form design
- IRB application (WCG or Advarra)
- Family-onboarding workflow
- First 5 enrollments
Connections
[part-of]index[applies]index[see-also]patient-registry-blueprint