UK Cystic Fibrosis Registry

First published 01/02/2024

Last updated 17/10/2024

Data source

Human

Disease registry

Other

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Administrative details

PURI: https://redirect.ema.europa.eu/resource/36763

Data source ID: 36763

Name of data source: UK Cystic Fibrosis Registry

Data source acronym: UK CF Registry

Data holder: Cystic Fibrosis Trust

Data source type: Disease registry
Other

Data source type, other: Prospective studies database, pharmacovigillance Database

Main financial support: Funding by own institution
Funding from industry or contract research

Care setting: Hospital inpatient care
Hospital outpatient care
Primary care – specialist level (e.g. paediatricians)
Secondary care – specialist level (ambulatory)

Data source qualification If the data source has successfully undergone a formal qualification process (e.g., from the EMA, ISO or other certifications), this should be described.: No

Data source website: https://www.cysticfibrosis.org.uk/the-work-we-do/uk-cf-registry

Contact details

Elaine Gunn

Main

elaine.gunn@cysticfibrosis.org.uk

Joanne Osmond

Alternate

joanne.osmond@cysticfibrosis.org.uk

Data source regions and languages

Data source countries: United Kingdom

Data source languages: English

Data source establishment

Data source established: 01/01/1995

Data source time span: First collection: 01/01/1995
The date when data started to be collected or extracted.

Publications

Data source publications