The road to successful people-centric research in rare diseases: the web-based case study of the Immunology and CDG questionnaire (ImmunoCDGQ)
Resource Type
Article
Year
2022
Disorder / CDG Type
All CDGs
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 ofer privileged opportunities for biomedical data gathering, and participant recruitment, particularly in rare diseases. The immunology and CDG electronic (e-) questionnaire (ImmunoCDGQ) explores this paradigm, proposing a people-centric framework to advance health research and participant empowerment.
Authors
Rita Francisco
Sandra Brasil
Carlota Pascoal
Jaak Jaeken
Merell Liddle
Paula A Videira
Vanessa Dos Reis Ferreira
Keywords
CDG
Congenital Disorders of Glycosylation
Rare Diseases
People-centricity
Patient engagement
Patient empowerment
Patient recruitment
Electronic e-questionnaire
Social media
Web-based platforms
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