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iCARE Rare Diseases Dataset

Population Size

Not reported
Population Size statistic card

Years

1996

Years statistic card

Associated BioSamples

DNA

Associated BioSamples statistic card

Geographic coverage

England

Geographic coverage statistic card

Lead time

1-2 months

Lead time statistic card

Summary

Dataset covering care from the foremost service in the UK for patients with Pulmonary Arteriovenous Malformations (PAVMs) and Hereditary Haemorrhagic Telangiectasia (HHT)

Documentation

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

Dataset type

Health and disease

Associated media

https://www.imperial.nhs.uk/our-services/respiratory-medicine/hht-pavms

Keywords

Provenance

Purpose of dataset collection

Disease registry

Source of data extraction

EPR, Paper-based

Collection source setting

Secondary care - Outpatients

Patient pathway description

ICHT care

Image contrast

Not stated

Biological sample availability

DNA

Structural Metadata

Details

Publishing frequency

Quarterly

Version

1.0.0

Modified

24/06/2026

Citation Requirements

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

Coverage

Start date

01/01/1996

Time lag

Variable

Geographic coverage

England

Minimum age range

18

Maximum age range

120

Follow-up

Continuous

Accessibility

Language

en

Alignment with standardised data models

NHS DATA DICTIONARY

Controlled vocabulary

SNOMED CT, OPCS4

Format

Application SQL

Data Access Request

Dataset pipeline status

Not available

Access rights

https://www.imperial.ac.uk/medicine/research-and-impact/groups/icare/icare-facility/information-for-researchers/

Time to dataset access

1-2 months

Access request cost

By request

Access method category

TRE/SDE

Access service description

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.

Jurisdiction

UK

Data use limitation

General research use

Data use requirements

Project-specific restrictions

Data Controller

Imperial College Healthcare NHS Trust

Data Processor

Imperial College Healthcare NHS Trust

Dataset Types: Health and disease

Dataset Sub-types: Rare diseases

Collection Sources: Secondary care - Outpatients