HDR Gateway logo
HDR Gateway logo

Bookmarks

UK Cystic Fibrosis Registry (CYFI)

Population Size

13,000

People

Years

2018 - 2021

Associated BioSamples

None/not available

Geographic coverage

United Kingdom

Lead time

2-6 months

Summary

The UK Cystic Fibrosis Registry is a national, secure, centralized database sponsored and managed by the Cystic Fibrosis Trust, with UK National Health Service (NHS) research ethics approval and consent from each person for whom data are collected.

Documentation

The UK Cystic Fibrosis Registry is a national, secure, centralized database sponsored and managed by the Cystic Fibrosis Trust, with UK National Health Service (NHS) research ethics approval and consent from each person for whom data are collected. First established in 1995, it records longitudinal health data on all people with cystic fibrosis (CF) in England, Wales, Scotland and Northern Ireland, and to date has captured data on over 12,000 individuals.

If you are interested in using the CYFI dataset in the SAIL Databank, please contact SAIL via the website, along with also discussing your project with the Cystic Fibrosis Registry team for further advice via email at: registry@cysticfibrosis.org.uk

Dataset type
Health and disease
Dataset sub-type
Not applicable
Dataset population size
13000
Associated media
https://saildatabank.com/about-us/, https://popdatasci.swan.ac.uk/centres-of-excellence/sail/, https://saildatabank.com/

Keywords

SAIL, Cystic Fibrosis, genotype, CYFI, Health & Wellbeing, Growing Old, Children & Young People

Observations

Observed Node
Disambiguating Description
Measured Value
Measured Property
Observation Date

Persons

13000

Count

09 Jun 2020

Provenance

Purpose of dataset collection
Administrative
Source of data extraction
LIMS
Collection source setting
Other
Image contrast
Not stated
Biological sample availability
None/not available

Structural Metadata

Details

Publishing frequency
Continuous
Version
4.0.0
Modified

08/10/2024

Distribution release date

09/06/2020

Citation Requirements
["Cystic Fibrosis Trust, with UK National Health Service (NHS)"]

Coverage

Start date

14/08/2018

End date

08/09/2021

Time lag
2-6 months
Geographic coverage
United Kingdom
Maximum age range
120
Follow-up
Other

Accessibility

Language
en
Controlled vocabulary
LOCAL
Format
SQL database table

Data Access Request

Dataset pipeline status
Not available
Access rights
https://saildatabank.com/data/apply-to-work-with-the-data/
Time to dataset access
2-6 months
Access request cost
Data provision is free from SAIL. Overall project costing depends on the number of people that require access to the SAIL Gateway, the activities that SAIL needs to complete (e.g. loading non-standard datasets), data refreshes, analytical work required, disclosure control process, and special case technological requirements.
Access method category
TRE/SDE
Access service description
The SAIL Databank is powered by the UK Secure e-Research Platform (UKSeRP). Following approval through safeguard processes, access to project-specific data within the secure environment is permitted using two-factor authentication.
Jurisdiction
GB-GBN
Data use limitation
Research-specific restrictions
Data use requirements
Project-specific restrictions
Data Controller
Cystic Fibrosis Trust, with UK National Health Service (NHS)
Data Processor
SAIL Databank

Dataset Types: Health and disease

Collection Sources: Other