Chartkin

Patient-advocacy foundations often maintain member spreadsheets containing diagnosis dates, treating centers, therapies as reported, trial interest, and consent status. The supplied research confirms a high-touch advocacy partnership company serving more than 100 groups, a large clinical-record network, open healthcare interoperability infrastructure, and a January 1, 2027 payer-interface mandate that may improve patient-authorized retrieval. It found no foundation-owned self-serve registry in the proposed lower price band. Chartkin gives the foundation a governed member registry, but the member—not the foundation—controls each authorization and purpose. Record retrieval must follow the member's exact authorization, identity match, source, scope, and expiry. Structured fields remain candidates linked to original records until member or qualified review; they cannot become diagnosis, treatment history truth, eligibility, trial matching, or clinical advice by inference. The per-member view supports consent administration and member-directed coordination, not medical care. Cohort views require a separately approved purpose, compatible definitions, minimum groups, suppression, privacy and re-identification review, and data-use controls. De-identification reduces risk but does not guarantee anonymity, especially in rare disease. Research, fundraising, advocacy, and commercial or pharmaceutical engagement are separate purposes and cannot share consent by default. Withdrawal stops future use as promised and records what prior lawful uses or derived aggregates can and cannot be reversed.

The executive, registry, research, community, or partnerships owner at a rare-disease or patient-advocacy foundation with member trust and no affordable longitudinal registry.