Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 229 days ago
Documentation
Associated Media:
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.
Coverage
Spatial:
United Kingdom
Typical Age Range:
18-100
Follow Up:
Other
Pathway:
Dataset collected during the initial COVID-19 phase with first data collection
phase primarily in April 2020 and second in June 2021. Data collected by survey
from people self-identifying as having a diagnosis of IBD and at risk from
COVID-19 due to a combination of risk factors set out by the BSG
Provenance
Origin
Sources:
Electronic survey
Collection Situations:
Home
Temporal
Accrual Periodicity:
Static
Distribution Release Date:
30 June 2021
Start Date:
01 April 2020
End Date:
30 June 2021
Time Lag:
Not applicable
Accessibility
Access
Access Service:
Data may only be accessed in a Trusted Research Environment (TRE) approved by
the IBD Registry, preferably the IBD Registry’s own TRE.
Access Request Cost:
Delivery Lead Time:
Not applicable
Jurisdictions:
GB
Data Controller:
IBD Registry Ltd
Data Processor:
Data processor is AIMES (https://aimes.uk/) who manage the data platform where
our health data is managed
Usage
Data Use Limitations:
- Research-specific restrictions
- Project-specific restrictions
Data Use Requirements:
- Institution-specific restrictions
- Project-specific restrictions
- User-specific restriction
- Time limit on use
Resource Creators:
IBD Registry Ltd
Format and Standards
Vocabulary Encoding Schemes:
ICD10
Languages:
en
Formats:
- text
- csv
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Events
The medications reported by each participant as being taken at the first timepoint, plus other medications-related data specific to the medication type. This survey was repeated at the second timepoint in June 2021
39800
COUNT OF MEDICATIONS
01 April 2020
Findings
The disease activity measure of control reported by each participant at the second timepoint
9800
COUNT OF ACTIVITY (DISEASE)
30 June 2021
Findings
The work type reported by each participant at the second timepoint, particularly focused on healthcare profession work
9800
COUNT OF WORK
30 June 2021
Findings
The vaccination status reported by each participant as at the second timepoint
9800
COUNT OF VACCINATIONS
30 June 2021
Findings
Experience of healthcare during 2020-21 as judged by the participant, captured at the second timepoint
9800
COUNT OF HEALTHCARE EXPERIENCE
30 June 2021
Findings
The disease measure of control reported by each participant at the second timepoint as captured by the ICHOM-validated IBD-Control 8 instrument
9800
COUNT OF PROMS
30 June 2021
Findings
The responses to questions related to 2021 experiences by the participant captured at the second timepoint
9800
COUNT OF ABOUT 2020
30 June 2021
Persons
9800
WORK
30 June 2021
Persons
Persons (patients) self-identifying as having a confirmed clinical diagnosis of IBD and being resident in the UK at the first timepoint (between April and August 2020) with ethical permission for data inclusion in an ethically approved COVID-19 IBD study
30000
COUNT OF PATIENTS
01 April 2020
Persons
Medications associated with the first timepoint
39800
COUNT OF MEDICATIONS
01 April 2020
Persons
Persons (patients) self-identifying as having a confirmed clinical diagnosis of IBD and being resident in the UK at the first timepoint (between April and August 2020) and consenting to take part in the Registry"s ethically approved COVID-19 IBD study. )
9800
COUNT OF PATIENTS
01 April 2020
Persons
Basic demographic information about the participant captured at the first timepoint. Enhanced demographic information was captured at the second timepoint from the consented group (9,800)
39800
COUNT OF DEMOGRAPHICS
01 April 2020
Persons
9800
COUNT
30 June 2021
Persons
9800
VACCINATIONS
30 June 2021