Organisation

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.

Office management:

Dr.Dominique Baumann

Project coordination

 

Nadine Lötscher

Data Management, Assistance project coordination

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.

PD 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

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
Institut für Sozial- und Präventivmedizin, Universität Bern