Documentation
Description:
Dataset covering care from the foremost service in the UK for patients with Pulmonary Arteriovenous Malformations (PAVMs) and Hereditary Haemorrhagic Telangiectasia (HHT)
Capturing digital assessment form for new patients, SNOMED CT coding system for improved diagnosis mapping, combining patient data from over 40 years with prospective patient data collected via the EPR
Coverage
Spatial:
England
Typical Age Range:
18-120
Follow Up:
Continuous
Pathway:
ICHT care
Provenance
Origin
Purposes:
Disease registry
Sources:
- EPR
- Paper-based
Collection Situations:
Secondary care - Outpatients
Temporal
Accrual Periodicity:
Quarterly
Start Date:
01 January 1996
Time Lag:
Variable
Accessibility
Access
Access Rights:
Access Service:
We have set up a single route for applications to access Imperial College
Healthcare NHS Trust's (ICHT) de-identified patient data. Please read all the
information to
https://www.imperial.ac.uk/medicine/research-and-impact/groups/icare/icare-facility/information-for-researchers/
before applying to access data. The iCARE team are happy to support applications
for all types of studies requiring access to routine data, however some types of
studies may require further approvals or review by other committees, for
example: Transfer of data outside of the Trust Projects that involve contact
with patients (e.g. clinical trials) Projects that require access to
identifiable data We can provide details of these further approvals as part of
the application process.
Access Request Cost:
By request
Delivery Lead Time:
1-2 months
Jurisdictions:
UK
Data Controller:
Imperial College Healthcare NHS Trust
Data Processor:
Imperial College Healthcare NHS Trust
Usage
Data Use Limitations:
General research use
Data Use Requirements:
Project-specific restrictions
Resource Creators:
This research was enabled by the iCARE Digital Collaboration Space & Secure Data Environment and used the iCARE & WSIC team and data resources. Infrastructure support for this research was provided by the National Institute for Health Research (NIHR) Imperial Biomedical Research Centre (NIHR203323) and the NIHR North-West London Patient Safety Research Collaboration (NIHR NWL PSRC, Ref. NIHR204292). The iCARE database was given favourable ethics approval by the South West Central Bristol Research Ethics Committee (reference 21/SW/0120; IRAS project ID 282093). The Whole System Integrated Care (WSIC) database was given favourable ethics approval by the West Midlands Solihull Research Ethics Committee (reference 18/WM/0323; IRAS project ID 252449). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care
Format and Standards
Vocabulary Encoding Schemes:
- SNOMED CT
- OPCS4
Conforms To:
NHS DATA DICTIONARY
Languages:
en
Formats:
Application SQL