Early stages of building a rare disease registry, methods and 2010 data from the Belgian Neuromuscular Disease Registry (BNMDR)

The Belgian Neuromuscular Disease Registry, commissioned in 2008, aims to collect data to improve knowledge on neuromuscular diseases and enhance quality health services for neuromuscular disease patients. This paper presents a clear outline of the strategy to launch a global national registry. All patients diagnosed with one of the predefined 62 neuromuscular disease groups and living in Belgium may be included in the yearly updated Registry. Basic core data is harvested through a newly designed web application by the six accredited neuromuscular reference centres. In 2010, 3,424 patients wit... Mehr ...

Verfasser: Roy, Anna J
Van den Bergh, Peter
Van Damme, Philip
Doggen, Kris
Van Casteren, Viviane
BNMDR Scientific Committee, the
De Bleecker, Jan
Van Coster, Rudy
Dokumenttyp: journalarticle
Erscheinungsdatum: 2015
Schlagwörter: Medicine and Health Sciences / CHARCOT-MARIE-TOOTH / EPIDEMIOLOGY / POPULATION / PREVALENCE / NEUROPATHY / DISORDERS / BRAIN / Neuromuscular / Diseases / Registry / Belgium
Sprache: Englisch
Permalink: https://search.fid-benelux.de/Record/base-27304366
Datenquelle: BASE; Originalkatalog
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Link(s) : https://biblio.ugent.be/publication/8525487