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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