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Patient engagement in the design of clinical research in Noonan syndrome spectrum disorders: a scoping review

BACKGROUND: Noonan syndrome spectrum disorders are a group of disorders caused by mutations in several genes of the RAS/MAPK pathway. Because of a highly heterogeneity and variable phenotypical manifestations of the disorders, these children and adults have a variable number of symptoms. Inclusion o...

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Detalles Bibliográficos
Autores principales: Tiemens, Dagmar K., Nugteren, Jacqueline, Leenders, Erika, Wingbermühle, Ellen, Pittens, Carina A. C. M., Draaisma, Jos M. Th.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8549341/
https://www.ncbi.nlm.nih.gov/pubmed/34702330
http://dx.doi.org/10.1186/s13023-021-02083-x