Guide · Two-minute read

What is a patient-owned registry?

Plain language, no jargon. This is the first of a series of short guides that explain one idea at a time.

01 · The idea

A shared, well-kept list.

A registry is a structured list of people who share a condition: which condition, treated where, with what outcome. Kept well, it is the raw material of research; nobody can study what nobody can count.

02 · What “patient-owned” changes

The community holds the keys.

In most registries, a hospital or a company decides what is collected and who may use it. In a patient-owned registry, the patient community governs those decisions. Families contribute on explicit consent, can withdraw at any time, and the data serves care and research only; it is never bought or sold.

03 · For families

Answer questions once, help every family after you.

Every entry makes the picture sharper: how frequent each condition is, which treatments help at which age, where expertise lives. The next family gets better answers because yours were recorded.

04 · For researchers

Comparable data across countries, at last.

Limb-difference research is starved of data because cases are rare and scattered. An interoperable registry pools them across borders in one comparable format, large enough to study.

05 · How DysNet builds it

Association by association, with a technical partner.

Member associations bring their families in, country by country. Health Data Safe, a Swiss non-profit foundation, is proposed as technical and operational partner; the mandate is before the AGM of 26 August 2026. Read more on the registry page.