Sickle cell research depends on patients who were left out
Your records hold answers researchers need — and when they're used, you share in what they're worth. Free to try, Epic-approved, takes about 60 seconds.
Why this matters
About 100,000 Americans live with sickle cell disease. The community with the most at stake has been the least represented. Sickle cell predominantly affects Black Americans and has been historically underfunded and under-represented in research — even as new gene therapies create urgent demand for patient data. Roughly 1 in 365 Black newborns is affected.
Sickle cell records are exactly what today's research is missing
- Crisis & transfusion history — longitudinal records of pain crises and treatment over time.
- Imaging & organ-damage data — critical for studying long-term complications.
- Genomic & treatment response — high demand in the gene-therapy era.
Three steps. You stay in control.
- Connect your records — link your MyChart in about 60 seconds. No paperwork.
- We identity-protect & match — your name is removed before sharing, then your data is matched to sickle cell and gene-therapy studies.
- You get paid when it's used — every time your identity-protected data is licensed for a study, you share in what it earns.
Your privacy is the foundation
- Researchers never see your name — identity-protected before sharing.
- You control what's shared — toggle data types anytime.
- Epic-approved — connects securely via MyChart.
- HIPAA-aligned — consent at every step.
No catch — here's how it works
Researchers pay licensing fees for identity-protected data. CureCollab shares that revenue with you: 50% goes directly to study participants, 20% to all qualifying members as a recurring share, 30% keeps the platform running. Paid in U.S. dollars.