SF-36 quality of life
Nine dimensions, sample size, distribution statistics and comparisons, published only above a minimum cohort size.
Research collaboration
Connect rare-disease questions with real community evidence
DiseaseMaps currently connects active members across 1099 conditions. The new research layer turns their voluntary contributions into governed aggregate evidence and reviewed study opportunities.
Available aggregate assets
Patient-reported treatments
Structured, traceable treatment experiences with efficacy distributions; descriptive experience, never comparative clinical evidence.
Symptoms and severity
Deduplicated symptom reports with privacy suppression and explicit voluntary-sample bias warnings.
Community capacity
Counts of members, associations, professionals, resources and hub maturity without disclosing identities or contact data.
A reviewed path from registry to community
DiseaseMaps can match official study records to a disease hub conservatively, preserve the source and require review before showing an opportunity.
- Import the official study record and retain its registry identifier and update history.
- A human approves both the study and its disease match; names alone never verify a researcher.
- Interested members opt in, confirm separately and can withdraw without losing access to the community.
Governance boundaries
No automated microdata delivery. Public interfaces expose aggregates only. Any justified access to individual-level data needs a separate legal, ethical and security review.
Human review before publication. Registry imports, disease matches and professional identities remain pending until their stated verification path is completed.
Specific and withdrawable consent. Joining a community is not consent to research. Interest in a study is a separate, versioned, double-confirmed choice.