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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...
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Formato: | Online Artículo Texto |
Lenguaje: | English |
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BioMed Central
2016
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Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5103451/ https://www.ncbi.nlm.nih.gov/pubmed/27829465 http://dx.doi.org/10.1186/s13023-016-0532-x |
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author | Davies, William |
author_facet | Davies, William |
author_sort | Davies, William |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-5103451 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2016 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-51034512016-11-10 Insights into rare diseases from social media surveys Davies, William Orphanet J Rare Dis Letter to the Editor 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. BioMed Central 2016-11-09 /pmc/articles/PMC5103451/ /pubmed/27829465 http://dx.doi.org/10.1186/s13023-016-0532-x Text en © The Author(s). 2016 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
spellingShingle | Letter to the Editor Davies, William Insights into rare diseases from social media surveys |
title | Insights into rare diseases from social media surveys |
title_full | Insights into rare diseases from social media surveys |
title_fullStr | Insights into rare diseases from social media surveys |
title_full_unstemmed | Insights into rare diseases from social media surveys |
title_short | Insights into rare diseases from social media surveys |
title_sort | insights into rare diseases from social media surveys |
topic | Letter to the Editor |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5103451/ https://www.ncbi.nlm.nih.gov/pubmed/27829465 http://dx.doi.org/10.1186/s13023-016-0532-x |
work_keys_str_mv | AT davieswilliam insightsintorarediseasesfromsocialmediasurveys |