Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review.

ABSTRACT:

Purpose

Social media may be particularly valuable in research in rare genetic diseases because of the low numbers of patients and the rare disease community's robust online presence. The goal of this systematic review was to understand how social media is currently used in rare disease research and the characteristics of the participants in these studies.

Methods

We conducted a systematic review of six databases to identify studies published in English between January 2004 and November 2020, of which 120 met inclusion criteria.

Results

Most studies were observational (n = 114, 95.0%) and cross-sectional (n = 107, 89.2%), and more than half (n = 69, 57.5%) utilized only surveys. Only 101 rare diseases were included across all studies. Participant demographics, when rep

SUBMITTER: Miller EG 

PROVIDER: S-EPMC8720387 | biostudies-literature | 2021 Dec

REPOSITORIES: biostudies-literature