De-duplicating patient records from three independent data sources reveals the incidence of rare neuromuscular disorders in Germany

De-duplicating patient records from three independent data sources reveals the incidence of rare neuromuscular disorders in Germany

Abstract Background Estimation of incidence in rare diseases is often challenging due to unspecific and incomplete coding and recording systems. Patient- and health care provider-driven data collections are held with different organizations behind firewalls to protect the privacy of patients. They t...

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Bibliographic Details
Main Authors: Kirsten König, Astrid Pechmann, Simone Thiele, Maggie C. Walter, David Schorling, Adrian Tassoni, Hanns Lochmüller, Clemens Müller-Reible, Janbernd Kirschner
Format: Article
Language:English
Published: BMC 2019-06-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Incidence
Neuromuscular disease
Spinal muscular atrophy
Duchenne muscular dystrophy
Online Access:http://link.springer.com/article/10.1186/s13023-019-1125-2

Internet

http://link.springer.com/article/10.1186/s13023-019-1125-2

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