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Cystic Fibrosis Patient NTM culture

Population Size

Not reported
Population Size statistic card

Years

1996 - 2019

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 NTM culture is made up of many data items relating to NTM cultures grown from samples taken during CF patient encounters at NHS hospitals in UK.

DOI for dataset

https://doi.org/10.1093/ije/dyx196

Documentation

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).

Dataset type

Health and disease, Registry

Keywords

Provenance

Image contrast

Not stated

Biological sample availability

None/not available

Structural Metadata

Details

Publishing frequency

Annual

Version

8.0.0

Modified

08/10/2024

Distribution release date

01/09/2019

Citation Requirements

Cystic Fibrosis Trust

Coverage

Start date

01/01/1996

End date

01/09/2019

Time lag

More than 6 months

Geographic coverage

United Kingdom

Maximum age range

150

Accessibility

Language

en

Controlled vocabulary

LOCAL

Format

csv

Data Access Request

Dataset pipeline status

Not available

Access rights

https://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry/apply-for-data-from-the-uk-cf-registry

Time to dataset access

2-6 months

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

Access method category

Varies based on project

Jurisdiction

GB

Data Controller

Cystic Fibrosis Trust

Data Processor

Cystic Fibrosis Trust

Dataset Types: Health and disease, Registry

Dataset Sub-types: Respiratory

Collection Sources: