Swiss Registry for Neuromuscular Disorders
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age0+
SponsorUniversity of Bern
About this trial
The Swiss Patient Registry for DMD/BMD and SMA was launched in 2008 in order to give Swiss patients access to new therapies. It was founded with the financial support of several patient organizations and research foundations. Since 2008, children, adolescents and adults with DMD, BMD and SMA are registered with the help of all major muscle centers in Switzerland. After nearly ten years of activity, the Swiss Patient Registry for DMD/BMD and SMA implemented several adaptations in 2018 to meet current and future expectations of patient's organizations, health authorities and research organizations.
Eligibility criteria
Qualifiers
Children, adolescents and adults diagnosed with a NMD
Who are living or treated for a NMD in Switzerland, and
Who gave informed consent
Disqualifiers
None if diagnosis is confirmed, whenever possible, by genetic testing, or at least by biopsy and/or electroneuromyography, according to international standards for the diagnosis of the given NMD.
Trial design
Treatments tested in this trial
- Not listed
Trial groups
2,000 Participants
are grouped into 1 trial groupSponsors and collaborators
University of Bern
Lead sponsor
University Children's Hospital Basel
Collaborator
Insel Gruppe AG, University Hospital Bern
Collaborator
University of Lausanne Hospitals
Collaborator
Ente Ospedaliero Cantonale, Bellinzona
Collaborator
University Children's Hospital, Zurich
Collaborator
University Hospital, Zürich
Collaborator
SwissPedNet
Collaborator
Source ClinicalTrials.gov