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Co-designing models for the communication of genomic results for rare diseases: a comparative study in the Czech Republic and the United Kingdom
The communication of genomic results to patients and families with rare diseases raise distinctive challenges. However, there is little evidence about optimal methods to communicate results to this group of service users. To address this gap, we worked with rare disease families and health professio...
Autores principales: | Costa, Alessia, Franková, Věra, Robert, Glenn, Macek, Milan, Patch, Christine, Alexander, Elizabeth, Arellanesova, Anna, Clayton-Smith, Jill, Hunter, Amy, Havlovicová, Markéta, Pourová, Radka, Pritchard, Marie, Roberts, Lauren, Zoubková, Veronika, Metcalfe, Alison |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Springer Berlin Heidelberg
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9075921/ https://www.ncbi.nlm.nih.gov/pubmed/35523996 http://dx.doi.org/10.1007/s12687-022-00589-w |
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