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
This trial does not accept healthy volunteersQualifiers
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 population
All individuals living or treated in Switzerland with a diagnosis of a NMD. Currently, Spinal muscular atrophy, Duchenne muscular dystrophy, Merosin negative congenital muscular dystrophy MDC1A and Collagen 6 related muscular dystrophy are included. In the future, patients with other NMDs (e.g. Charcot-Marie-Tooth neuropathy, Myotonic Dystrophy or rare myopathies) may also be included if it appears relevant to clinicians and researchers active in the field of NMDs, patient organisations, and public health representatives.
Trial design
Design model
Cohort
Time perspective
Other
Treatments tested in this trial
Not listed
Trial groups
2,000 Participants
are grouped into 1 trial groupGroup A: Patient population
Trial outcomes
Primary outcomes
1
Personal data
Registering and updating patients personal data
Time frame
Baseline medical information, follow-up data collection at regular intervals (at diagnosis, then at least annually, up to 80 years)2
Initial symptoms
Initial symptoms
Time frame
At diagnosis3
Age at initial symptoms and diagnosis
Age at initial symptoms and diagnosis
Time frame
At diagnosis4
Family history
Other affected family members
Time frame
At diagnosisSponsors and contacts
Click on the lead sponsor to view all of their trials.
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