Lead researcher
|
Summary |
Institution |
Data provided |
Publication |
| 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 |
Mohindru B, JCF 2019(18): 452-460
|
| 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
|
Schlueter DK, JCF; 2019(18):S19 |
| 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 |
Schlueter DK, JCF; 2019(18):390-395 |
| 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 |
Frost F, Annals ATS 2019; 16(11): 1375-1382 |
| Julian Legg |
Evaluating bone health assessment in children and adolescents with cystic fibrosis. |
Southampton General Hospital |
Jan 2018 |
Legg J, Endocrine Abstracts 2018; 58: P010
|
| 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 |
|