1 dataset found
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    IBD Registry COVID-19

    • healthdatagateway.org
    unknown
    Updated Jul 31, 2024
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    IBD Registry Ltd (2024). IBD Registry COVID-19 [Dataset]. https://healthdatagateway.org/en/dataset/620
    Explore at:
    unknownAvailable download formats
    Dataset updated
    Jul 31, 2024
    Dataset authored and provided by
    IBD Registry Ltd
    License

    https://ibdregistry.org.uk/analysis-and-research/apply-to-use-our-data/https://ibdregistry.org.uk/analysis-and-research/apply-to-use-our-data/

    Description

    The Registry has captured a consented research dataset from 9,800 patients with a further 30,000 ethically permissioned records for research related to IBD and COVID-19. This includes patient demographics, medications; plus vaccinations, responses and care received during COVID-19 period April 2020-June 2021. The original source of the data was the IBD Registry's COVID-19 IBD Risk Tool, which was launched at the start of the pandemic (1 April 2020) to allow people with IBD to self-assess their risk. It had a high uptake, with over 16,000 people completing it in the first week alone; by the first end of shielding in August 2020 ovr 37,000 people with IBD had completed it. Ethical permission was sought and received to re-contact participants for use of this data in research relate to IBD and COVID-19, along with a follow-on survey to give a second timepoint about one year later, which was by June 2021. 9,800 people consented and completed the follow-on (second timepoint) survey, with the ethical permissions allowing the original dataset (first timepoint only) to also be used in research under more restricted permissions providing all requests for withdrawal fulfilled.

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Share
FacebookFacebook
TwitterTwitter
Email
Click to copy link
Link copied
Close
Cite
IBD Registry Ltd (2024). IBD Registry COVID-19 [Dataset]. https://healthdatagateway.org/en/dataset/620

IBD Registry COVID-19

IBD Registry COVID-19

Explore at:
7 scholarly articles cite this dataset (View in Google Scholar)
unknownAvailable download formats
Dataset updated
Jul 31, 2024
Dataset authored and provided by
IBD Registry Ltd
License

https://ibdregistry.org.uk/analysis-and-research/apply-to-use-our-data/https://ibdregistry.org.uk/analysis-and-research/apply-to-use-our-data/

Description

The Registry has captured a consented research dataset from 9,800 patients with a further 30,000 ethically permissioned records for research related to IBD and COVID-19. This includes patient demographics, medications; plus vaccinations, responses and care received during COVID-19 period April 2020-June 2021. The original source of the data was the IBD Registry's COVID-19 IBD Risk Tool, which was launched at the start of the pandemic (1 April 2020) to allow people with IBD to self-assess their risk. It had a high uptake, with over 16,000 people completing it in the first week alone; by the first end of shielding in August 2020 ovr 37,000 people with IBD had completed it. Ethical permission was sought and received to re-contact participants for use of this data in research relate to IBD and COVID-19, along with a follow-on survey to give a second timepoint about one year later, which was by June 2021. 9,800 people consented and completed the follow-on (second timepoint) survey, with the ethical permissions allowing the original dataset (first timepoint only) to also be used in research under more restricted permissions providing all requests for withdrawal fulfilled.

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