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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

This table shows all Registry data requests from the past two years. You can also download a full list of Registry data requests dating from 2016.

Lead researcher
Summary Institution Data provided
Freddy Frost Investigating the effects of treatment on long-term outcomes of newly diagnosed CFRD in Germany and UK
Liverpool Adult CF Centre Sep 2019
Imogen Felton Audit of UK National Adult CF Centre Rates of Fungal Airway Isolates 2013 – 2018
Royal Brompton Hospital Sep 2019
Christopher Rounds Review of clinical trial involvement section completion of the Registry.
Cystic Fibrosis Trust Sep 2019
Thom Daniels Prognostic scores for adults with cystic fibrosis.
University Hospital Southampton Sep 2019
Zhe Hui Hoo
Cystic fibrosis clinical characteristics associated with dry powder inhalers and wet nebulisers use
Sheffield Teaching Hospitals
Sep 2019
Paul Tappenden Development and evaluation of an intervention to support adherence to treatment in adults with cystic fibrosis (NIHR funded programme grant – the “ACtiF” study, including the CFHealthHub trial, NIHR project code RP-PG-1212-20015).
School of Health and Related Research (ScHARR), University of Sheffield
Aug 2019
Nicola Robotham Current antimicrobial use in people with CF who have infection with non-tuberculous mycobacterium (NTM)
University of Nottingham Aug 2019
Gordon MacGregor
Horizon scanning assessment
NHS GGC
Aug 2019
Malcolm Brodie
Investigating the incidence and prevalence of non-tuberculous mycobacterial infection in children with cystic fibrosis in the United Kingdom.
Newcastle University/Great North Children’s Hospital
Aug 2019
Freddy Frost Improving lung transplant allocation for patients with Cystic Fibrosis: Validation of the French 3-year prognostic score using the UK CF Registry
Liverpool Heart and Chest Hospital
Aug 2019
Ruth Keogh The changing demography of the cystic fibrosis population: Forecasting future numbers of adults in the UK
LSHTM
May 2019
Danielle Edwards Exploring low bone mineral density (BMD) in cystic fibrosis
Imperial College London May 2019
Andrew Wilfin
Demographic data for UK split by devolved nations: As part of our ongoing discussions on access to medicines for people with cystic fibrosis we need to have accurate information to support all decision makers to define how we can provide access for treatment
Vertex Pharmaceuticals May 2019
Kieran Earlam The aim of the project is to rebuild the interactive population map of the UK on the Cystic Fibrosis Trusts website, to enable members of the CF community and the public to see the distribution of CF across the UK.
Cystic Fibrosis Trust Apr 2019
Daniela Schlueter
Comparison of lung function decline in the US and UK CF populations
Lancaster University
Mar 2019
Andrew Lee & Elliot McClenaghan
Describing the relationship between age, gender, and burden of treatment
Cystic Fibrosis Trust
Jan 2019
Jacqueline Ali & Becky Kilgariff
Employment and Education status of people with CF
Cystic Fibrosis Trust
Jan 2019
Iolo Doull
Should we newborn screen for CFTR mutations of variable consequence?
Children’s Hospital for Wales, Cardiff
Jan 2019
Jennifer Still
Management of CF Diabetes Mellitus
Aberdeen Royal Infirmary
Jan 2019
Laura Caley
The Impact of Gut Dysbiosis on Lung Inflammation in Cystic Fibrosis.
LIMR, School of Medicine, St James's University Hospital, Leeds
Jan 2019
Danielle Edwards
Exploring the rate of decline in lung function before and after Cystic Fibrosis Related Diabetes (CFRD) diagnosis
Imperial College, London
Dec 2018
Patrick Sosnay A Phase 2, Randomized, Double-blind Study to Evaluate the Efficacy and Safety of VX-561 in Subjects Aged 18 Years and Older With Cystic Fibrosis
Vertex Pharmaceuticals
Dec 2018
Iolo Doull
Why are infants with CF not detected through newborn screening?
Children’s Hospital for Wales, Cardiff
Nov 2018
Emma France Is an audio-visual support resource and action plan template effective and cost-effective in increasing adherence to home chest physiotherapy in children with cystic fibrosis aged 0-8 years.
University of Stirling, Scotland
Nov 2018
Peter vanMourik
Hit-CF Study
University Medical Center Utrecht Nov 2018
Anna Evans Number of individuals eligible by genotype for CFTR modulating therapy in each nation of the UK, defined by anonymysied centre attended
Cystic Fibrosis Trust
Nov 2018
Thom Daniels
Cause of death in cystic fibrosis patients and lung transplant referral practices
University Hospitals Southampton & NHS England
Sep 2018
Woolf Walker
Comparison of spirometry data of children with CF to children with Primary Ciliary Dyskinesia
University Hospitals Southampton & NHS England
Sep 2018
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 


Research we're funding

The Trust is committed to funding and supporting cutting-edge research to find new and better treatments for cystic fibrosis. Take a look at some of that work and the progress that is being made.

What is cystic fibrosis?

Find out more about cystic fibrosis, its diagnosis and how it is treated, as well as useful links to our publications and other organisations who can help.

More information

If you would like to find out more about any of our campaigns, publications or anything else, get in touch and we'll be happy to help.