How to design a registry for undiagnosed patients in the framework of rare disease diagnosis: suggestions on software, data set and coding system

BACKGROUND: About 30 million people in the EU and USA, respectively, suffer from a rare disease. Driven by European legislative requirements, national strategies for the improvement of care in rare diseases are being developed. To improve timely and correct diagnosis for patients with rare diseases,...

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Detalles Bibliográficos
Autores principales: Berger, Alexandra, Rustemeier, Anne-Kathrin, Göbel, Jens, Kadioglu, Dennis, Britz, Vanessa, Schubert, Katharina, Mohnike, Klaus, Storf, Holger, Wagner, Thomas O. F.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8088651/
https://www.ncbi.nlm.nih.gov/pubmed/33933089
http://dx.doi.org/10.1186/s13023-021-01831-3

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8088651/
https://www.ncbi.nlm.nih.gov/pubmed/33933089
http://dx.doi.org/10.1186/s13023-021-01831-3

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