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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,...
| Autores principales: | , , , , , , , , |
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
| Publicado: |
BioMed Central
2021
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| Materias: | |
| 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 |