NCT05102916 Swiss Registry for Neuromuscular Disorders
| NCT ID | NCT05102916 |
| Status | Recruiting |
| Phase | — |
| Sponsor | University of Bern |
| Condition | SMA |
| Study Type | OBSERVATIONAL |
| Enrollment | 2,000 participants |
| Start Date | 2018-06-20 |
| Primary Completion | 2071-01-01 |
Eligibility & Interventions
Eligibility Fast-Check
Enter your details for a quick preliminary check. This does not replace medical advice.
What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 2,000 participants in total. It began in 2018-06-20 with a primary completion date of 2071-01-01.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief Summary
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
Inclusion Criteria: * Children, adolescents and adults diagnosed with a NMD * Who are living or treated for a NMD in Switzerland, and * Who gave informed consent Exclusion Criteria: * 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.
Contact & Investigator
Claudia E Kuehni, Prof. MD
PRINCIPAL INVESTIGATOR
Institute of Social and Preventive Medicine (ISPM), University of Bern
Frequently Asked Questions
Who can join the NCT05102916 clinical trial?
This trial is open to participants of all sexes, aged 0 Years or older, studying SMA. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT05102916 currently recruiting?
Yes, NCT05102916 is actively recruiting participants. Contact the research team at swiss-reg-nmd.ispm@unibe.ch for enrollment information.
Where is the NCT05102916 trial being conducted?
This trial is being conducted at Aarau, Switzerland, Bellinzona, Switzerland, Lugano, Switzerland, Lausanne, Switzerland and 11 additional locations.
Who is sponsoring the NCT05102916 clinical trial?
NCT05102916 is sponsored by University of Bern. The principal investigator is Claudia E Kuehni, Prof. MD at Institute of Social and Preventive Medicine (ISPM), University of Bern. The trial plans to enroll 2,000 participants.