Insights into rare diseases from social media surveys.
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.
Medical Research Council Centre for Neuropsychiatric Genetics and Genomics and Division of Psychological Medicine and Clinical Neurosciences, School of Medicine Cardiff University, Cardiff, UK. daviesw4@cardiff.ac.uk.|School of Psychology, Cardiff University, Tower Building, 70, Park Place, Cardiff, CF10 3AT, UK. daviesw4@cardiff.ac.uk.|Neuroscience and Mental Health Research Institute, Cardiff University, Cardiff, UK. daviesw4@cardiff.ac.uk.
William
0000-0002-7714-2440
W
Davies
D006801:Humans; D007057:Ichthyosis; D035583:Rare Diseases; D061108:Social Media; D011795:Surveys and Questionnaires
Facebook; Response bias; Social media; Survey; Twitter; X-linked ichthyosis