Davies, William ![]() ![]() |
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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 |
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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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