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UK Cystic Fibrosis Registry (CYFI)

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.

Description

More detailed information about this field from each metasource.

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.

metasource: HDR UK
version: extracted_at: 2022-09-05T08:28:24.125862

Webpage:

https://www.healthdatagateway.org/dataset/b43309eb-7860-49b7-9f11-1a7a0fd5532e

Webpage

More detailed information about this field from each metasource.

https://www.healthdatagateway.org/dataset/b43309eb-7860-49b7-9f11-1a7a0fd5532e

metasource: HDR UK
version: extracted_at: 2022-09-05T08:28:24.125862

Licence:

Name: HDR UK Innovation Gateway Access

Licence name

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HDR UK Innovation Gateway Access

metasource: HDR UK
version: extracted_at: 2022-09-05T08:28:24.125862

URL: https://www.hdruk.ac.uk/infrastructure/gateway/terms-and-conditions/

Licence URL

More detailed information about this field from each metasource.

https://www.hdruk.ac.uk/infrastructure/gateway/terms-and-conditions/

metasource: HDR UK
version: extracted_at: 2022-09-05T08:28:24.125862

Tags:

Tags
More detailed information about this field from each metasource.

SAIL
metasource: HDR UK
version: extracted_at: 2022-09-05T08:28:24.125862

Cystic Fibrosis
metasource: HDR UK
version: extracted_at: 2022-09-05T08:28:24.125862

genotype
metasource: HDR UK
version: extracted_at: 2022-09-05T08:28:24.125862

cystic fibrosis genotype

More to explore:

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Cystic Fibrosis Patient CFQ-R

The UK Cystic Fibrosis Registry CFQ-R is made up of many data items relating to the quality of life tool 'Cystic Fibrosis Questionnaire - Revised' captured for CF patients. The UK CF Registry is a cen ...

Cystic Fibrosis Patient Demographics

The UK Cystic Fibrosis Registry Demographic is made up of data items relating key demographic information about CF patients, relating to their diagnosis and genotype. The UK CF Registry is a centralis ...

Cystic Fibrosis Patient Transplants

The UK Cystic Fibrosis Registry Transplants is made up of many data items relating to transplant journey(s) taken by CF patients at NHS hospitals in UK. The UK CF Registry is a centralised database of ...

Cystic Fibrosis Patient Liver Enzyme

The UK Cystic Fibrosis Registry Liver Enzymes is made up of data items relating to liver enzyme tests taken during CF patient encounters at NHS hospitals in UK. The UK CF Registry is a centralised dat ...

Cystic Fibrosis Patient Microbiology Cultures

The UK Cystic Fibrosis Registry Culture is made up of many data items relating to microbiology and cultures grown from samples taken during CF patient encounters at NHS hospitals in UK. The UK CF Regi ...

Cystic Fibrosis Patient NTM culture

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. The UK CF Registry is a ...

Cystic Fibrosis Patient Chronic Medication

The UK Cystic Fibrosis Registry Chronic Medications is made up of data relating to chronic medications taken by CF patients (taken for more than 3 months.). Medications have been entered by CF centres ...

Cystic Fibrosis Patient Tendon Rupture

The UK Cystic Fibrosis Registry Tendon Rupture is made up of data items relating to patient tendon rupture with reference to treatment and location of the ruptured tendon. The UK CF Registry is a cent ...

Cystic Fibrosis Patient Annual Review Encounters

The UK Cystic Fibrosis Registry Annual Review Encounters is made up data recorded at the CF Centre: height, weight, lung function tests, respiratory cultures, x-ray results, and the results of other t ...

Cystic Fibrosis Mutation Database

The Cystic Fibrosis Mutation Database (CFTR1) was initiated by the Cystic Fibrosis Genetic Analysis Consortium in 1989 to increase and facilitate communications among CF researchers, and is maintained ...

Cystic Fibrosis Patient Sweat Tests

The UK Cystic Fibrosis Registry Sweat Chloride Tests is made up of data items relating to sweat chloride tests taken during CF patients encounters at NHS hospitals in UK. The UK CF Registry is a centr ...

Ontological Knowledge Base Model for Cystic Fibrosis

OntoKBCF is an ontological knowledge base model for cystic fibrosis. There are molecular genetic information (i.e. gene mutations) and health information included in OntoKBCF. The purposes of OntoKBCF ...

National Vascular Registry - Organisational Audit dataset

The NVR organisational audit dataset includes data collected between 9 July and 8 October 2018 on hospital vascular services in England, Wales, Scotland and Northern Ireland. It includes data on the a ...

MR measures of liver fibrosis (MRker)

Single centre prospective comparison of MRI and liver biopsy

National Vascular Registry Audit - Carotid Endarterectomy Clinical Dataset

The dataset contains continuously ascertained patient-level data for patients undergoing carotid endarterectomy in NHS hosptials in England, Wales, Scotland and Northern Ireland. It includes referral, ...

Its Not JUST Idiopathic pulmonary fibrosis Study (INJUSTIS)

The Its Not JUST Idiopathic pulmonary fibrosis Study (INJUSTIS) is a multicentre, prospective, observational cohort study aiming to identify genetic, serum and other biomarkers that are shared among p ...

NHS Data

NHS is the national health provider of UK. Our national data sets collect information from care records, systems and organisations on specific areas of health and care. This is used to inform policy a ...

National Vascular Registry Audit - Lower Limb Amputation clinical dataset

The dataset contains continuously ascertained patient-level data for patients undergoing lower limb amputation in NHS hosptials in England, Wales, Scotland and Northern Ireland. It includes informatio ...

National Vascular Registry - Lower Limb Angioplasty clinical dataset

The dataset contains continuously ascertained patient-level data for patients undergoing lower limb angioplasty in NHS hosptials in England, Wales, Scotland and Northern Ireland. It includes informati ...

National Vascular Registry Audit - Lower Limb Bypass clinical dataset

The dataset contains continuously ascertained patient-level data for patients undergoing lower limb vascular bypass in NHS hosptials in England, Wales, Scotland and Northern Ireland. It includes infor ...

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Data is amalgamated and only retrieved periodically.
Some of the resources used by the system:

® FAIRsharing.org
® Bioontology/Bioportal Terms
® Nucleic Acid Research - Database
® re3data.org
® bio.tools
® PubMed - Courtesy of the U.S. National Library of Medicine