History of the Swiss-Reg-NMD
The registry for patients with Duchenne/Becker Muscular Dystrophy (DMD/BMD) and patients with Spinal Muscular Atrophy (SMA) was founded in Lausanne in 2008. Ten years later, the registry has been restructured to meet the current needs of patients, researchers and patient organizations. This reorganization was approved by the Ethics Committee Bern on 18.04.2018. This approval allows the collection of data on neuromuscular diseases throughout Switzerland.
Executive Office
The executive office manages the daily tasks of the registry and is located at the University of Bern at the Institute of Social and Preventive Medicine (ISPM).
Project management
Dominique Baumann
Andrea Mathis
Data management
Anna Born
Board of Directors
The Board is the governing body of the registry. It is composed of doctors from the major neuromuscular clinics in all three regions of Switzerland. The Board determines the long-term overall strategy and represents the registry externally. The work of the Board is carried out on a purely voluntary basis.
Prof. Dr. med. Andrea Klein
Neuromuskuläre Sprechstunde UKBB
Leiterin pädiatrisches Muskelzentrum Inselspital Bern
Consultation neuromusculaire pédiatrique – CHUV Neuroréhabilitation pédiatrique
Dr. med. David Jacquier, chef de clinique
DFME – Service de pédiatrie
Neuroréhabilitation pédiatrique, CHUV
PD 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
Legal representation
Prof. Dr. med. Claudia Kuehni
Leiterin Forschungsgruppe Kinder- und Jugendgesundheit
ISPM, Universität Bern