Lead researcher
|
Summary |
Institution |
Data provided |
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 |
| 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 |