Lead researcher
|
Summary |
Institution |
Data provided |
Publication |
| Siobhan Carr |
Displacement of CF services in England during the COVID-19 pandemic
|
Royal Brompton Hospital
|
Jun 2020 |
|
Ronan Lyons
|
Utilising routine data and machine learning techniques to discover new multi-morbidity and polypharmacy phenotype's associated with poorer outcomes, health, resilience and wellbeing in the Welsh population
|
SAIL Databank
|
Jun 2020 |
|
| Ruth Keogh |
Assessing the impact of lung transplantation on survival in cystic fibrosis in the UK using linked data from the UK Cardiothoracic Transplant Registry and the UK Cystic Fibrosis Registry
|
LSHTM |
Apr 2020 |
|
| Ruth Keogh |
Potential impact of Trikafta and COVID-19 on hospital bed use by people with cystic fibrosis
|
LSHTM |
Apr 2020 |
|
Freddy Frost
|
Exploring real-world exacerbations in the CFTR modulator era
|
Liverpool Adult CF Centre
|
Apr 2020 |
|
Andrew Lee
|
The long term effects of Ivacaftor and the implications on the burden of care
|
CFT |
Apr 2020 |
|
Ruth Keogh
|
Investigating the impact of ivacaftor on survival
|
LSHTM |
Apr 2020 |
|
Jane Davies
|
Preparing for a first-in-man trial of pseudotyped lentiviral gene therapy for CF
|
Imperial College London/Royal Brompton Hospital
|
Apr 2020 |
|
Fred Piel
|
The role of environmental 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 |
|
| 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
|
Sep 2019 |
|
| Nicola Robotham |
Current antimicrobial use in people with CF who have infection with non-tuberculous mycobacterium (NTM)
|
University of Nottingham |
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 |
|
Gordon MacGregor
|
Horizon scanning assessment
|
NHS GGC
|
Aug 2019 |
|
| Ruth Keogh |
The changing demography of the cystic fibrosis population: Forecasting future numbers of adults in the UK
|
LSHTM
|
Aug 2019 |
Keogh R et al Scientific Reports 2020
|
| Danielle Edwards |
Exploring low bone mineral density (BMD) in cystic fibrosis
|
Imperial College London |
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 |
|
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 |
Aug 2019 |
|
Zhe Hui Hoo
|
Cystic fibrosis clinical characteristics associated with dry powder inhalers and wet nebulisers use
|
Sheffield Teaching Hospitals
|
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 |
May 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
|
May 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
|
Mar 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 |
|
Danielle Edwards
|
Exploring the rate of decline in lung function before and after Cystic Fibrosis Related Diabetes (CFRD) diagnosis |
Imperial College, London |
Jan 2019 |
|
Ruth Keogh
|
Investigating the Effects of Long-Term Dornase Alfa Use on Lung Function Using Registry Data
|
LSHTM |
Jan 2019 |
Newsome SJ et al, J Cyst Fibros 2019
|
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
|
Jan 2019 |
|