Insights into rare diseases from social media surveys

Davies, William ORCID: https://orcid.org/0000-0002-7714-2440 2016. Insights into rare diseases from social media surveys. Orphanet Journal of Rare Diseases 11 , 151. 10.1186/s13023-016-0532-x

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Abstract

The internet, and social media platforms, are increasingly being used by substantial sectors of the worldwide population. By engaging effectively with online and social media, scientists and clinicians can obtain unprecedented access to relatively large cohorts of individuals with rare diseases, as well as their relatives, carers and professionals involved in their healthcare. Online surveys of these stakeholder groups may provide important new insights into rare conditions and their management relatively quickly and easily, with the possibility of rapid translation into healthcare interventions and policy. Here, I describe our recent positive experience with the online survey approach to a rare disease (X-linked ichthyosis), and review its advantages and limitations.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Medicine MRC Centre for Neuropsychiatric Genetics and Genomics (CNGG) Neuroscience and Mental Health Research Institute (NMHRI) Psychology
Subjects:	R Medicine > R Medicine (General)
Publisher:	BioMed Central
ISSN:	1750-1172
Funders:	Medical Research Council
Date of First Compliant Deposit:	9 November 2016
Date of Acceptance:	4 November 2016
Last Modified:	28 Sep 2023 20:07
URI:	https://orca.cardiff.ac.uk/id/eprint/95958

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