Register 2 · Ongoing studies updated Aug 2026
Studies our community can join or follow. Each entry shows who runs it, its status, and whom to contact. Associations: tell us about studies in your country.
A five-step research project promoted by DysNet on behalf of Raggiungere, tracking the experiences of patients, families, doctors and researchers through a shared questionnaire, to give families updated medical and scientific knowledge.
ERN BOND ePAG · approved, in progress · contact via info@dysnet.org
An observational study combining MRI and behavioural measures to understand how the central nervous system reorganises in people born with upper-limb amelia, compared with controls. About 70 participants; adults with congenital upper-limb loss can take part in Zurich.
University of Zurich, Switzerland · recruiting until 2027 · ClinicalTrials.gov · NCT06043518 ↗
A DysNet workgroup compares the subsidies each EU country grants for prostheses: amounts due, and which prosthesis technologies qualify. A regional initiative at Regione Lombardia (2026) is the working example other countries can replicate.
DysNet workgroup · data collection open to all member associations
EURORDIS’s survey programme on living with a rare disease. DysNet contributes content and translations and relays each wave to members.
EURORDIS · join the panel
Orphanet catalogues ongoing clinical trials, research projects, registries and biobanks per rare disease. The maintainer screens it for limb-difference studies each quarter.
Orphanet · clinical trials · research projects
A workgroup prepares a European-level survey across cultural, medical, scientific and technological dimensions, drawing on university and research centres, hospitals and orthopaedic units in the countries DysNet represents.
DysNet workgroup · in preparation