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The IDeaS initiative: pilot study to assess the impact of rare diseases on patients and healthcare systems
BACKGROUND: Rare diseases (RD) are a diverse collection of more than 7–10,000 different disorders, most of which affect a small number of people per disease. Because of their rarity and fragmentation of patients across thousands of different disorders, the medical needs of RD patients are not well r...
Autores principales: | Tisdale, Ainslie, Cutillo, Christine M., Nathan, Ramaa, Russo, Pierantonio, Laraway, Bryan, Haendel, Melissa, Nowak, Douglas, Hasche, Cindy, Chan, Chun-Hung, Griese, Emily, Dawkins, Hugh, Shukla, Oodaye, Pearce, David A., Rutter, Joni L., Pariser, Anne R. |
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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/PMC8532301/ https://www.ncbi.nlm.nih.gov/pubmed/34674728 http://dx.doi.org/10.1186/s13023-021-02061-3 |
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