Co-creating a knowledge base in the “22q11.2 deletion syndrome” community

22q11.2 DS is characterised by its variability, rarity and variety of features ranging from congenital heart conditions to psychiatric and behavioural issues. As a result, health information–seeking behaviour is different from other more common conditions. An exploratory study was carried out to und...

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Detalles Bibliográficos
Autores principales: Rizzo, Roberta, Van den Bree, Marianne, Challenger, Aimee, Cuthbert, Andrew, Ayllon, Michael Arribas, Clarke, Angus, Thompson, Rose
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Berlin Heidelberg 2019
Materias:
Original Article
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6962416/
https://www.ncbi.nlm.nih.gov/pubmed/31129779
http://dx.doi.org/10.1007/s12687-019-00425-8

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