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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 Publication 
Fred Piel
The role of environmantal factors in cystic fibrosis disease progression
SAHSU, Imperial College London
Mar 2020  
Andrew Lee/Elliot McClenaghan
(Amendment to) Describing the relationship between age, gender, and burden of treatment.
Cystic Fibrosis Trust
Feb 2020  
Daniela Schueter
Identifying policy‐relevant determinants of health inequalities in cystic fibrosis using data linkage
University of Liverpool
Feb 2020  
Alex Horsley
Frequency of specific CFTR genotype
Manchester Adult CF Centre
Feb 2020  
Elizabeth Clarke
Screening for MSK Symptoms in Adults with CF.
Manchester Adult CF Centre
Jan 2020  
Amanda Bevan
Usage of inhaled mucolytics and antibiotics in people with CF in England 2016-2018.
Pharmacist Respiratory CRG (NHSE)
Jan 2020  
Kevin Southern Total number of new diagnosis in CF START sites for 2017/2018/2019
Liverpool Clinical Trials Centre, Alder Hey NHS Foundation Trust, Liverpool
Dec 2019  
 Kieran Earlam Number of individuals eligible by genotype for CFTR modulating therapy in each nation of the UK, defined by centre attended
Cystic Fibrosis Trust  Dec 2019  
Kieran Earlam The Cystic Fibrosis Trust policy team is putting together a document to highlight the future that CF care can play as an exemplar for the NHS. In order to do this, we want to use the figure of the average amount of days that people with CF spend in hospital each year.
Cystic Fibrosis Trust Dec 2019  
Karen Raraigh
The overall goal of this project is to assess the disease liability, functional effect, and potential for therapeutic response of variants in CFTR that have been reported in individuals with CF.  This will also result in our ability to assess the contribution of CFTR genotype to CF-related phenotypes
Johns Hopkins University, Baltimore, USA
Nov 2019  
Kathryn Tanner
 Presentation of survival information for people with cystic fibrosis LSHTM
Nov 2019  
Ruth Keogh The aim of this project is to better understand the impact of CFRD on survival and to quantify how much of the impact of CFRD on mortality is mediated by lung function versus other biologic pathways.
LSHTM
Nov 2019  
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  

Research we fund

We fund research to tackle some of the most pressing issues in CF today. Find out how your donations are making a difference.

What is CF?

Cystic fibrosis, or CF, affects the lungs, digestive system and other organs, and there are around 10,500 people living with it in the UK.

Contact us

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