UK Cystic Fibrosis Registry (CYFI)
Dataset
Summary
Citation:
CITATION INCOMPLETE
Documentation
Associated Media:
Description:
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.
Coverage
Spatial:
United Kingdom
Typical Age Range:
0-120
Follow Up:
OTHER
Provenance
Origin
Purposes:
ADMINISTRATIVE
Sources:
LIMS
Collection Situations:
OTHER
Temporal
Accrual Periodicity:
CONTINUOUS
Distribution Release Date:
10 June 2020
Start Date:
15 August 2018
End Date:
15 June 2020
Time Lag:
2-6 MONTHS
Accessibility
Access
Access Service:
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.
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.
Jurisdictions:
GB-GBN
Data Controller:
Cystic Fibrosis Trust, with UK National Health Service (NHS)
Data Processor:
SAIL Databank
Usage
Data Use Limitations:
RESEARCH SPECIFIC RESTRICTIONS
Data Use Requirements:
PROJECT SPECIFIC RESTRICTIONS
Resource Creators:
["Cystic Fibrosis Trust, with UK National Health Service (NHS)"]
Format and Standards
Vocabulary Encoding Schemes:
LOCAL
Conforms To:
LOCAL
Languages:
en
Formats:
SQL database table
Enrichment and Linkage
Qualified Relations:
Yes. To any SAIL dataset & reference data.
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
PERSONS
13000
Count
10 June 2020
Origin
Name:
SAIL Databank (Wales)