Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 424 days ago
Cystic Fibrosis Patient Transplants
Dataset
Summary
DOI Name:
10.1093/ije/dyx196
Documentation
Description:
The UK CF Registry is a centralised database of all 60 CF centres across the UK. Data are manually entered in calendar years by CF clinical teams for the 99% of people with a diagnosis of CF who consent to their data being donated to the Registry. Data are entered onto a secure web-portal. For more information please see www.cysticfibrosis.org.uk/registry and "Data Resource Profile: The UK CF Registry" published in the International Journal of Epidemiology (2018 Feb 1;47(1)9-10e).
Coverage
Spatial:
United Kingdom
Typical Age Range:
0-150
Follow Up:
6 - 12 Months
Provenance
Origin
Purposes:
- Research cohort
- Disease registry
- Care
- Study
Sources:
- EPR
- Paper-based
Collection Situations:
- Secondary care - In-patients
- Secondary care - Ambulance
- Clinic
- Patient report outcome
- Prescribing - Hospital
Temporal
Accrual Periodicity:
Annual
Distribution Release Date:
15 February 2020
Start Date:
01 January 1996
End Date:
02 February 2020
Time Lag:
1-2 months
Accessibility
Access
Access Rights:
Access Request Cost:
Whilst the UK CF Registry does not charge for data, it must recoup costs of data
handling (including extract and cleaning), project management, and analysis
(where applicable) on behalf of third parties. The charging structure outlined
below is designed to be fair, proportionate, and transparent whilst furthering
the Registry’s aim of stimulating research use of the data for the benefit of
people with cystic fibrosis.
https://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry
Delivery Lead Time:
1-2 months
Jurisdictions:
GB-GBN
Data Controller:
Cystic Fibrosis Trust
Data Processor:
Cystic Fibrosis Trust
Usage
Data Use Limitations:
- General research use
- Genetic studies only
Data Use Requirements:
Ethics approval required
Resource Creators:
Cystic Fibrosis Trust
Format and Standards
Vocabulary Encoding Schemes:
LOCAL
Languages:
en
Formats:
csv