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

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 tend to b...

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Detalles Bibliográficos
Autores principales: König, Kirsten, Pechmann, Astrid, Thiele, Simone, Walter, Maggie C., Schorling, David, Tassoni, Adrian, Lochmüller, Hanns, Müller-Reible, Clemens, Kirschner, Janbernd
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6591958/
https://www.ncbi.nlm.nih.gov/pubmed/31234869
http://dx.doi.org/10.1186/s13023-019-1125-2