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UK Cystic Fibrosis Registry (CYFI)

Population Size

13,000

People

Population Size statistic card

Years

2018 - 2021

Years statistic card

Associated BioSamples

None/not available

Associated BioSamples statistic card

Geographic coverage

United Kingdom

Geographic coverage statistic card

Lead time

2-6 months

Lead time statistic card

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

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

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