Work

O56: The Clinical Genome Resource (ClinGen): Engaging the patient community in ClinGen’s work through Facebook Hereditary Cancer Groups

Year: 2023

Type: article

Abstract: Facebook groups are increasingly being used for rare disease communities, often serving as a platform to connect families and patients, and as a portal for peer-to-peer education. We wanted to explore the landscape of hereditary cancer support groups on Facebook as potential partners in outreach efforts for The Clinical Genome Resource (ClinGen). ClinGen is a multi-center consortium funded in large part through the National Human Genome Research Institute, with a goal to improve genomic medicine including through creating mechanisms of high-quality gene and variant curation.

Source: Genetics in Medicine Open

DOI: 10.1016/j.gimo.2023.100745

Authors: Deborah Ritter, Farid Ali, Sharon Plon

Institution: Baylor College of Medicine

Language: English

Topic: Social Media in Health Education

Subfield: Health

Field: Social Sciences

Domain: Social Sciences

SDG: Good health and well-being

Open Access status: gold

Estimated APC paid: $3,200