Actively Recruiting
Swiss Registry for Neuromuscular Disorders (Swiss-Reg-NMD)
Led by University of Bern · Updated on 2026-01-15
2000
Participants Needed
19
Research Sites
N/A
Total Duration
On this page
Sponsors
U
University of Bern
Lead Sponsor
U
University Children's Hospital Basel
Collaborating Sponsor
AI-Summary
What this Trial Is About
The registry collects medical information from children, adolescents, and adults living or treated in Switzerland who have been diagnosed with neuromuscular disorders such as Duchenne-Becker Muscular Dystrophy (DMD/BMD), Spinal Muscular Atrophy (SMA), merosin-deficient muscular dystrophy (LAMA2-related muscular dystrophy), and Collagen 6 related muscular dystrophy. The purpose is to establish a comprehensive Swiss cohort, provide epidemiological data, support clinical research, and facilitate communication between clinics, researchers, and health authorities. It was reorganized in 2018 to meet legal requirements and expectations of patients and research organizations. Participants diagnosed with these neuromuscular disorders are registered in the Swiss-Reg-NMD after giving informed consent. Data collection includes baseline medical information at diagnosis and follow-up data annually up to 80 years. The registry gathers clinical data, questionnaire responses, and links to routine statistics and other medical registries to cover disease severity, medical care, therapies, hospitalizations, motor function, socio-demographics, quality of life, and more. Participants will be involved through their treating physicians who inform them about the registry during consultations. The registry collects information on diagnosis, symptoms, family history, medical investigations, changes in living status, motor and cognitive functions, therapies, hospitalizations, side effects, and participation in clinical trials. Data protection measures ensure confidentiality and secure handling of personal health information. The study continues to monitor and collect data over many years to support research and patient care.
CONDITIONS
Brief Title
Swiss Registry for Neuromuscular Disorders
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Children, adolescents and adults diagnosed with a neuromuscular disorder
- Living in or treated for a neuromuscular disorder in Switzerland
- Provided informed consent to participate
You will not qualify if you...
- None if diagnosis is confirmed by genetic testing, or at least by biopsy and/or electroneuromyography according to international standards
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person) for consent and registration
Duration - Up to 80 years with at least annual follow-up
Participants with neuromuscular disorders are observed over time with regular collection of medical and questionnaire data to track health status, therapies, and quality of life.
At least 1 visit annually for follow-up data collection
Trial Site Locations
Total: 19 locations
1
Cantonal Hospital Aarau
Aarau, Canton of Aargau, Switzerland
Actively Recruiting
2
Pediatric Institute of Southern Switzerland, Ospedale San Giovanni
Bellinzona, Canton Ticino, Switzerland
Actively Recruiting
3
Neuro Centre of Italian Switzerland, Ospedale Regionale di Lugano
Lugano, Canton Ticino, Switzerland
Actively Recruiting
4
University Hospital Lausanne CHUV, Children's Hospital
Lausanne, Vaude, Switzerland
Actively Recruiting
5
University Hospital Lausanne CHUV
Lausanne, Vaude, Switzerland
Actively Recruiting
6
University Children's Hospital Basel
Basel, Switzerland
Actively Recruiting
7
University Hospital Basel
Basel, Switzerland
Actively Recruiting
8
Inselspital Bern, Children's Hospital
Bern, Switzerland
Actively Recruiting
9
Inselspital Bern
Bern, Switzerland
Actively Recruiting
10
Institute of Social and Preventive Medicine (ISPM), University of Bern
Bern, Switzerland
Actively Recruiting
11
University Hospitals of Geneva, Children's Hospital
Geneva, Switzerland
Actively Recruiting
12
University Hospitals of Geneva
Geneva, Switzerland
Actively Recruiting
13
Cantonal Hospital of Lucerne LUKS
Lucerne, Switzerland
Actively Recruiting
14
Cantonal Hospital of Lucerne, LUKS
Lucerne, Switzerland
Actively Recruiting
15
Private Practice Alpenquai
Lucerne, Switzerland
Actively Recruiting
16
Cantonal Hospital of Eastern Switzerland
Sankt Gallen, Switzerland
Actively Recruiting
17
Children's Hospital of Eastern Switzerland
Sankt Gallen, Switzerland
Actively Recruiting
18
University Hospital Zuerich, Children's Hospital
Zurich, Switzerland
Actively Recruiting
19
University Hospital Zuerich
Zurich, Switzerland
Actively Recruiting
Research Team
C
Claudia E Kuehni, Prof. MD
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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