What is the Swiss Registry for Neuromuscular Disorders?
The Swiss Registry for Neuromuscular Disorders (Swiss-Reg-NMD) collects medical information from people with a neuromuscular disease. The registry is led by specialized physicians from all over Switzerland.
Why do we need this registry ?
In recent years, great progress has been made in the field of research into neuromuscular diseases. New drugs are constantly being developed and tested. The registry helps patients to access therapeutic trials.
The Swiss-Reg-NMD aims to answer central questions such as “How are people with a neuromuscular disease in Switzerland?”, “How are they treated?”, “Which therapies are effective?” For that purpose, we collect detailed, health-related information from medical records (e.g. on diagnosis, therapies or medications). Additionally, we send questionnaires to the affected families to inquire about their needs, quality of life, education, nutrition, etc. The analysis of this data helps to optimize the treatment and inclusion of people with a neuromuscular disease in Switzerland.
«Our goal is to improve the treatment and social inclusion of people with a neuromuscular disease.»
Who can participate?
All people with a neuromuscular disease who are being treated in Switzerland can participate. Currently, the following diseases are covered:
- Spinal Muscular Atrophy (SMA)
- Duchenne and Becker muscular dystrophy (DMD and BMD)
- Merosin-negative muscular dystrophy (also called LAMA2-associated muscular dystrophy, MDC1A or LAMA2)
Please contact us! We are happy to answer your questions about the Swiss-Reg-NMD:
Dr. Anne Tscherter / Dr. Dominique Baumann
Institut für Sozial- und Präventivmedizin
Tel: +41 31 684 33 95
Dr. med. David Jacquier, chef de clinique
DFME – Service de pédiatrie
Neuroréhabilitation pédiatrique, CHUV
Dr. med. Paolo Ripellino
spec. neuromuscolare e malattie genetiche rare
Neurocentro della Svizzera Italiana, Ospedale Regionale di Lugano
PD Dr. med. Georg M. Stettner
Leiter Neuromuskuläres Zentrum
Neuropädiatrie, Universitäts-Kinderspital Zürich
PD Dr. med. Olivier Scheidegger
Leiter Neuromuskuläres Zentrum
Universitätsklinik für Neurologie, Inselspital Bern
PD Dr. med. Esther Irene Schwarz
Leitung Zentrum für Schlafmedizin und Beatmung
Klinik für Pneumologie, Universitätsspital Zürich
PD Dr. Bettina Schreiner
Stellvertretende Leitung Neuromuskuläre Sprechstunde
Leitung Spezialsprechstunde entzündliche neuromuskuläre Erkrankungen
Klinik für Neurologie, Universitätsspital Zürich
The Swiss-Reg-NMD contributes to the improvement of treatments and the quality of life of people with a neuromuscular disease. Our work is funded exclusively through donations. We are therefore dependent on donations.
Postal account of the University of Bern: 30-6618-3
IBAN: CH90 0900 0000 3000 6618 3
Important: When making a payment, always add the note «Donation 38-247».
For donations over 1000 Fr we need a donation letter, please contact us for this.
Thank you very much for your support!
We thank the following benefactors for their support:
- Muscle Society
- ASRIMM – Association Suisse Romande Intervenant contre les Maladies neuro-Musculaires
- MGR – Associazione malattie genetiche rare della svizzera italiana
- ssem/fsrmm – swiss foundation for research into muscle diseases
- SMA Switzerland
- Duchenne Switzerland
- Avexis, Biogen, Novartis, Pfizer, PTC Therapeutics, Roche, Sarepta