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 Switzerland and a representative of a patient organisation. 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
Abteilungsleiterin Neuropädiatrie, Rehabilitation und Entwicklung
Universitätsklinik für Kinderheilkunde, Inselspital
Konsiliarärztin am UKBB für neuromuskuläre Krankheiten
Dr. med. David Jacquier
Médecin hospitalier, DFME – Service de pédiatrie
Neuroréhabilitation pédiatrique, CHUV Lausanne
PD Dr. med. Paolo Ripellino
Medico specialista, Ente Ospedaliero Cantonale
Istituto di Neuroscienze Cliniche della Svizzera Italiana, Clinica di Neurologia
Ospedale Regionale di Lugano
Prof. Dr. med. Olivier Scheidegger
Leiter Neuromuskuläres Zentrum
Universitätsklinik für Neurologie, Inselspital Bern
PD Dr. med. Bettina Schreiner
Stellvertretende Leiterin Neuromuskuläre Sprechstunde und ENMG Sprechstunde
Klinik für Neurologie, Neuromuskuläres Zentrum
Universitätsspital Zürich
Prof. Dr. med. Esther Irene Schwarz
Stv. Klinikdirektorin
Klinik für Pneumologie
Leiterin Zentrum für Schlafmedizin und Heimventilation
Universitätsspital Zürich
PD Dr. med. Georg M. Stettner
Leiter Neuromuskuläres Zentrum, Abteilung Neuropädiatrie
Universitäts-Kinderspital Zürich
Robert Palm
Président progena – Swiss Duchenne Foundation
Legal representation
Prof. Dr. med. Claudia Kuehni
Leiterin Forschungsgruppe Kinder- und Jugendgesundheit
ISPM, Universität Bern