A systematic overview of rare disease patient registries: challenges in design, quality management, and maintenance

Patient registries serve to overcome the research limitations inherent in the study of rare diseases, where patient numbers are typically small. Despite the value of real-world data collected through registries, adequate design and maintenance are integral to data quality. We aimed to describe an ov...

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Detalles Bibliográficos
Autores principales: Hageman, Isabel C., van Rooij, Iris A.L.M., de Blaauw, Ivo, Trajanovska, Misel, King, Sebastian K.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Review
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10163740/
https://www.ncbi.nlm.nih.gov/pubmed/37147718
http://dx.doi.org/10.1186/s13023-023-02719-0

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10163740/
https://www.ncbi.nlm.nih.gov/pubmed/37147718
http://dx.doi.org/10.1186/s13023-023-02719-0

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