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Cystic Fibrosis Trust

Apply for data from the UK CF Registry

Our registry contains a large amount of clinical and demographic data on cystic fibrosis (CF) in the UK, from 1996 to the present day.

Who can apply for data from the Registry? 

Researchers from recognised institutions can apply for access to aggregated, anonymised, or pseudonymised data from the UK CF Registry to perform their own analysis for the benefit of people with cystic fibrosis.

The UK CF Registry sends annual data to the ECFS Patient Registry.

How to apply for Registry data

Your request will be considered by the Registry Research Committee and a decision will be provided within six weeks. Data requests take a minimum of eight weeks to complete.

Download the demographic template and annual review template to see what is collected in the UK CF Registry.

You can also download our public UK CF Registry Annual Data Reports.

Recent and ongoing Registry data requests

Lead researcher
Summary Institution Data provided
Gordon MacGregor
To see which patients we will be able to treat with tezacaftor/ivacaftor.
Queen Elizabeth University Hospital, Glasgow
Aug 2018 
Gwyneth Davies
Can we reduce the treatment burden for people with CF taking a CFTR modulator by withdrawing a nebulised therapy (e.g. DNase) without adversely affecting lung health?
UCL GOS Institute of Child Health
Aug 2018
Woolf Walker
Comparison of spirometry data of children with CF to children with PCD. 
University Hospital Southampton NHS Foundation Trust
Aug 2018
Eitam Keren  EL-004, Phase 2 study with biweekly ELX-02 in patients with nonsense mutations of cystic fibrosis.
Hadassah University Medical Center, Israel on behalf of Ellox Pharmaceuticals   Jul 2018
Bishal Mahindru  Health Economic modelling of cystic fibrosis. University of East Anglia, Norwich   Jun 2018
Thom Daniels  NHS England Clinical Commissioning Policy Proposition: Levofloxacin nebulizer solution for chronic Pseudomonas lung infection in cystic fibrosis (adults). University Hospitals Southampton & NHS England   Apr 2018
Daniela Schleuter The UK transplant pathway: a descriptive analysis. University of Lancaster

Mar 2018

Eitan Kerem Phase 2, pilot study in patients carrying nonsense CFTR mutations to assess safety and pharmacokinetics. Hadassah University Medical Center, Israel Mar 2018 
Dan Beever
This research seeks to find out more about the experiences of men with CF around fertility issues and treatment, and staff that care for them. This will include exploring when men find out about their own fertility situation, as well as considering and undergoing treatment. The research will seek to identify ways that the fertility care process can be improved, to better support men with CF.
School of Health and Related Research (ScHARR), The University of Sheffield Mar 2018 
 Kathy Wogan & Laura Butler Comparison of local data to national data for our primary airway clearance with new born screened infants. Heartlands Hospital Birmingham  Jan 2018 
Dominic Hughes  Pseudomonas aeruginosa and Aspergillus fumigatus: inhibitory competition for a niche in the cystic fibrosis airway.  NHLI, Imperial College London  Jan 2018
Daniela Schleuter  Identifying policy‐relevant determinants of health inequalities in cystic fibrosis using data linkage. Lancaster University  Jan 2018 
Ursula Peaple  In 2012 £30 million was spent on high-cost inhaled drugs in the UK CF population. High-cost inhaled drugs should deliver high value benefits in terms of preventing. NHS England Specialised commissioning  Jan 2018 
 Fred Piel The role of environmental factors in cystic fibrosis disease progression. Department of Epidemiology & Biostatistics, Imperial College London  Jan 2018 
Freddy Frost  An anti-microbial effect of ivacaftor? A case-control study utilizing data from the UK CF Registry. Liverpool Heart and Chest Hospital  Jan 2018 
Julian Legg  Evaluating bone health assessment in children and adolescents with cystic fibrosis. Southampton General Hospital  Jan 2018 
 Dominique Limoli Influence of chronic suppressive anti-Staphylococcal therapies on acquisition of Pseudomonas aeruginosa in pediatric patients. The Geisel School of Medicine at Dartmouth USA   Jan 2018
 Jessica Barrett Comparing different statistical methods for risk prediction. MRC Biostatistics Unit  Jan 2018 
 Michael Griffin This project is part of an NHS England programme looking at activity planning and outcome variation analysis across Specialised Services.
Solutions for Public Health, part of NHSArden & GEM CSU 
Oct 2017 
Bishal Mahindru Improving access/reimbursement decision making for Cystic Fibrosis treatment through the evaluation and incorporation of health economic evidence around the cost and effectiveness of interventions.    University of East Anglia, Norwich
Sep 2017
Jonathan Jones
Demographic data for UK split by devolved nations: We need to have accurate information to support all decision makers to define how we can provide access for treatment. (AGGREGATE DATA ONLY)
Vertex Pharmaceuticals, London
Sep 2017 
Matthew Hurley
The efficacy of antibiotic prophylaxis for the prevention of infection in young children with cystic fibrosis – a Registry study. University of Nottingham & Nottingham University Hospitals NHS Trust
Aug 2017 
Martin Wildman
An intervention to help adult patients with Cystic Fibrosis see how much treatment they use.
Sheffield Teaching Hospitals NHS Foundation Trust
Aug 2017
Annie Jeffery
Analyses of treatment outcomes for difficult-to-eradicate pulmonary infections caused by non-tuberculous mycobacteria (NTM) in people with in cystic fibrosis (PWCF) in the UK.
Cystic Fibrosis Trust  Jun 2017
Thom Daniels
Aim to develop a prognostic score for patients with cystic fibrosis.
University Hospital Southampton
Jun 2017
Zhe Hui Hoo
Understanding the stability of “chronic P. aeruginosa” status in the UK CF Registry.
Sheffield University Teaching Hospital
May 2017
Freddy Frost
Stenotrophomonas maltophilia and cystic fibrosis related diabetes.
Liverpool Heart and Chest Hospital
Mar 2017
Sarah Collins
The use of supplementary enteral feeding in the UK.
Royal Brompton Hospital, London
Mar 2017
Carol Drydon
Ethnicity in the UK for 2015.
Wishaw General Hospital, Glasgow
Mar 2017
Olia Archandelida
Cancer events in UK population with Cystic Fibrosis.
NHLI, Imperial College London
Mar 2017
Olga Archangelidi
Living with Cystic Fibrosis - aims at linking three patient reported outcome (PRO) measures with disease status at annual review.
NHLI, Imperial College London
Jan 2017
Rusha Saha
How does the prevalence of obesity in patients with Cystic Fibrosis in the UK differ between the years 2008 and 2015?
School of Medicine and Surgery, University of Leeds
Jan 2017
Vian Rajabzadeh-Heshejin
Lung function in cystic fibrosis: the impact of seasonality in the UK.
NHLI, Imperial College London Dec 2016
Rami Cosulich
A systematic review on prevalence of complications of CF, including the prevalence of malnutrition.
National Guideline Alliance, Royal College of Obstetricians and Gynaecologists
Dec 2016
Gwyneth Davies
The impact of spirometry reference equations on interpretation of longitudinal changes in lung function in individuals with CF: Analysis of UK CF Registry data.
Great Ormond Street Institute of Child Health and Great Ormond Street Hospital for Children NHS Foundation Trust
Nov 2016
Olga Archangelidi
Quality of Life in Cystic Fibrosis patients and its associations with various epidemiological factors.
NHLI, Imperial College London
Nov 2016
Hayley Wickens
Comparing the use of antimicrobials in our CF units at UHS with other centres in England/the UK.
University Hospital Southampton NHS Foundation Trust
Oct 2016
Stephanie MacNeill
Quality improvement in CF: What can we learn from each other?
University of Bristol
Oct 2016
Amy McDougall
Towards understanding the causal mechanisms driving growth and nutrition in early Cystic Fibrosis disease. This project will model early growth in children with CF and investigate the effect on subsequent lung function and survival.
NHLI, Imperial College London
Oct 2016
Jane Davies
A detailed mapping process of babies with eligible mutations and their months of birth, will we be able to optimally co-ordinate this process for participation in a trial.
Imperial College London
Oct 2016
Nick Medhurst
Number of individuals with at least one copy of (1) G551D and (2) another gating mutation covered by the European marketing authorisation for ivacaftor use in age ranges: <2; 2-5; and ≥6 in each nation of the UK, by centre attended.
Cystic Fibrosis Trust
Oct 2016
Omni Narayan
Use of a national database to find out how many UK children are on home oxygen and Non invasive ventilation.
Royal Manchester Children's Hospital
Oct 2016
Herbert & Caster
A comparison of the median age of death of cystic fibrosis (CF) patients with class 1 mutations vs cystic fibrosis patients with a homozygous delta f508 mutation.
University of Leeds
Aug 2016
Grace Bowmer
Number of children under 10 years of age who are diagnosed with CFRD and their clinical characteristics.
Leeds Teaching Hospitals NHS Trust
Jun 2016
Frank Edenborough
BTS talk on Pregnancy - data on pregnancies in years 2012-14.
Northern General Hospital, Sheffield
Jun 2016
David Taylor-Robinson, Epinet
Identifying policy‐relevant determinants of health inequalities in cystic fibrosis using data linkage.
University of Liverpool/ Lancaster University/ Lancaster University
Jun 2016
Stephen Nyangoma
Regional and National variations in clinical outcomes in patients with cystic fibrosis.
Imperial College, London
May 2016
Nick Medhurst
Supporting information for NICE technology appraisal of ataluren (Translarna®). Cystic Fibrosis Trust providing evidence to support topic selection. NICE estimates that 5-10% of people with CF have at least one nonsense mutation.
Cystic Fibrosis Trust
May 2016
Fiona Cathcart
Inhaled dry powder mannitol in adults with cystic fibrosis – a real world study.
Brompton Adult CF Centre
May 2016
Gemma Marciniuk
The most cost-effective immunomodulatory agents in the management of lung disease and the most cost-effective antimicrobial agents to suppress chronic infection with Pseudomonas Aeruginosa.
Royal College of Obstetricians and Gynaecologists, London
May 2016
Zhe Hui Hoo
The epidemiologic study of cystic fibrosis group found that the US and Canadian centres with the best FEV1 tend to use more IV antibiotics. These results have never been replicated in outher countries and we plan to repeat the same analysis using the UK CF registry dataset.
Northern General  Hospital, Sheffield
May 2016
Simon Piggott
Request for UK Cystic Fibrosis F508del homozygous and heterozygous epidemiological data. (AGGREGATE DATA ONLY)
Vertex Pharmaceuticals, USA
May 2016
Martin Wildmnan
Using Registry data to identify patient’s eligible to enter the CFHealthHub AcTIF trial.
Northern General Hospital, Sheffield
Apr 2016

Research we're funding

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