The road to successful people-centric research in rare diseases: the web-based case study of the Immunology and Congenital Disorders of Glycosylation questionnaire (ImmunoCDGQ)

Abstract Background Congenital Disorders of Glycosylation (CDG) are a complex family of rare metabolic diseases. Robust clinical data collection faces many hurdles, preventing full CDG biological and clinical comprehension. Web-based platforms offer privileged opportunities for biomedical data gathe...

Ful tanımlama

Detaylı Bibliyografya

Asıl Yazarlar:	Rita Francisco, Sandra Brasil, Carlota Pascoal, Jaak Jaeken, Merell Liddle, Paula A. Videira, Vanessa dos Reis Ferreira
Materyal Türü:	Artigo
Dil:	Inglês
Baskı/Yayın Bilgisi:	BMC 2022-03-01
Seri Bilgileri:	Orphanet Journal of Rare Diseases
Konular:	Congenital Disorders of Glycosylation (CDG) Rare diseases People-centricity Patient engagement Patient empowerment Patient recruitment
Online Erişim:	https://doi.org/10.1186/s13023-022-02286-w
Etiketler:	Etiketle Etiket eklenmemiş, İlk siz ekleyin!