Explanipedia

Getting our ducks in a row: The need for data utility comparisons of healthcare systems data for clinical trials Open

Matthew R. Sydes, Macey L Murray, Saiam Ahmed, Sophia Apostolidou, Judith M. Bliss , et al. · 2024

DUCkS could be a valuable tool in assessing where healthcare systems data can be used for trials and in which trial teams can play a leading role. There is a pressing need for trials to be more efficient in their delivery and research wast…

Surveying the landscape of OMOP CDM adoption in the UK: Preliminary report Open

Alex E. Knight, Paola Quattroni, David Seymour, Monica Jones, Geoff Hall , et al. · 2023

<p>A preliminary report summarising some of the results from a questionnaire investigating OMOP adoption across the UK.</p>

Risk factors for forced expiratory volume in 1 s decline in European patients with cystic fibrosis: data from the European Cystic Fibrosis Society Patient Registry Open

Elpis Hatziagorou, Steffen Fieuws, Annalisa Orenti, Lutz Naehrlich, Uroš Krivec , et al. · 2023

Aim To examine the trajectory of forced expiratory volume in 1 s (FEV 1 ) using data from the European Cystic Fibrosis Society patient registry (ECFPR) collected from 2008 to 2016, i.e. the era before highly effective modulator therapy (HE…

The risk of colorectal cancer in individuals with mutations of the cystic fibrosis transmembrane conductance regulator (CFTR) gene: An English population-based study Open

Rebecca Birch, D. Peckham, Henry M. Wood, Philip Quirke, Rob Konstant‐Hambling , et al. · 2022

Studies have demonstrated a higher risk of developing colorectal cancer (CRC) in individuals with Cystic Fibrosis (CF), and also a potentially increased risk in carriers of cystic fibrosis transmembrane conductance regulator (CFTR) mutatio…

Factors associated with clinical progression to severe COVID-19 in people with cystic fibrosis: A global observational study Open

S.B. Carr, Elliot McClenaghan, Alexander Elbert, Albert Faro, Rebecca Cosgriff , et al. · 2022

Exploring the nature of perceived treatment burden: a study to compare treatment burden measures in adults with cystic fibrosis Open

Rana Altabee, S.B. Carr, Janice Abbott, Rory Cameron, Daniel Office , et al. · 2022

Background: Despite the importance of reducing treatment burden for people with cystic fibrosis (CF), it has not been fully understood as a concept. This study aims to quantify the treatment burden perceived by CF adults and explore the a…

Factors for severe outcomes following SARS-CoV-2 infection in people with cystic fibrosis in Europe Open

Andreas Jung, Annalisa Orenti, Fiona Dunlevy, Elīna Aleksejeva, Egil Bakkeheim , et al. · 2021

Background Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection in people with cystic fibrosis (pwCF) can lead to severe outcomes. Methods In this observational study, the European Cystic Fibrosis Society Patient Registry…

Pregnancy rates and outcomes in women with cystic fibrosis in the UK: comparisons with the general population before and after the introduction of disease‐modifying treatment, 2003–17 Open

OB Esan, Daniela K Schlüter, Rhiannon Phillips, Rebecca Cosgriff, Shantini Paranjothy , et al. · 2021

Objective To compare pregnancy rates and outcomes for women with cystic fibrosis in the UK with those of the general population and assess the effect of the introduction of disease‐modifying treatment. Design A population‐based longitudina…

Projecting the impact of triple CFTR modulator therapy on intravenous antibiotic requirements in cystic fibrosis using patient registry data combined with treatment effects from randomised trials Open

Ruth H. Keogh, Rebecca Cosgriff, Eleni‐Rosalina Andrinopoulou, K. Brownlee, S.B. Carr , et al. · 2021

Background Cystic fibrosis (CF) is a life-threatening genetic disease, affecting around 10 500 people in the UK. Precision medicines have been developed to treat specific CF-gene mutations. The newest, elexacaftor/tezacaftor/ivacaftor (ELE…

OP45 Pregnancy and perinatal outcomes for women with cystic fibrosis: a UK population-based registry study, 2003–2017 Open

Oluwaseun B Esan, Daniela K Schlüter, Rhiannon Phillips, Rebecca Cosgriff, Shantini Paranjothy , et al. · 2021

Background Cystic fibrosis (CF) is an inherited, progressive condition affecting over 10 000 individuals in the UK. With advancement in care leading to improved prognosis and survival, women with CF are increasingly considering starting fa…

Pregnancy and perinatal outcomes for women with Cystic Fibrosis: a UK population-based cross-sectional study, 2003-2017 Open

Oluwaseun B Esan, Daniella Schlüter, Rhiannon Phillips, Rebecca Cosgriff, Shantini Parajothy , et al. · 2021

Objective To estimate the pregnancy rates and outcomes for women with cystic fibrosis (wwCF) in the UK compared to the general population and to explore the impact of the introduction of disease modifying treatments on pregnancy rates. Des…

Incidence of SARS-CoV-2 in people with cystic fibrosis in Europe between February and June 2020 Open

Lutz Naehrlich, Annalisa Orenti, Fiona Dunlevy, Irena Kasmi, Satenik Harutyunyan , et al. · 2021

SARS-CoV-2 infection can result in severe illness and death for pwCF, even for younger patients and especially for lung transplant recipients. PwCF should continue to shield from infection and should be prioritized for vaccination.

COVID-19 vaccine prioritisation for people with cystic fibrosis Open

S.B. Carr, Rebecca Cosgriff, Satenik Harutyunyan, Peter G. Middleton, Rasa Ruseckaite , et al. · 2021

P083 Clinical progression of SARS-CoV-2 infection in people with cystic fibrosis: a global observational study Open

Elliot McClenaghan, Rebecca Cosgriff, K. Brownlee, Stéphane P. Ahern, Pierre‐Régis Burgel , et al. · 2021

WS08.1 Pregnancy and perinatal outcomes in women with cystic fibrosis in the UK: a population-based study using UK Registry data, 2003–2017 Open

Oluwaseun B Esan, Daniela K Schlüter, Robert A. Phillips, Rebecca Cosgriff, Shantini Paranjothy , et al. · 2021

Factors Associated With Clinical Progression to Severe COVID-19 in People With Cystic Fibrosis: A Global Observational Study Open

S.B. Carr, Elliot McClenaghan, Alexander Elbert, Albert Faro, Rebecca Cosgriff , et al. · 2021

Clinical characteristics of SARS-CoV-2 infection in children with cystic fibrosis: An international observational study Open

Robert Bain, Rebecca Cosgriff, Marco Zampoli, Alexander Elbert, Pierre‐Régis Burgel , et al. · 2020

SARS-CoV-2 infection in children with CF is usually associated with a mild illness in those who do not have pre-existing severe lung disease.

The global impact of SARS-CoV-2 in 181 people with cystic fibrosis Open

Elliot McClenaghan, Rebecca Cosgriff, K. Brownlee, Susannah Ahern, Pierre‐Régis Burgel , et al. · 2020

Re: The outcome of pregnancy in women with cystic fibrosis: a UK population based descriptive study. (First comment on BJOG-20-0094.R1) Open

J. Duckers, Daniella Schlueter, Rhiannon Phillips, Rebecca Cosgriff, O Esan , et al. · 2020

Peer reviewed

Identifying children with Cystic Fibrosis in population-scale routinely collected data in Wales Open

Rowena Griffiths, Daniela K Schlüter, Ashley Akbari, Rebecca Cosgriff, David Tucker , et al. · 2020

Introduction The challenges in identifying a cohort of people with a rare condition can be addressed by routinely collected, population-scale electronic health record (eHR) data, which provide large volumes of data at a national level. Th…

P072 Using Registry data to investigate differences in casemix and health indicators at an adult centre versus national peers Open

Andrew Jones, Rebecca Cosgriff, A. Lee, Susan C. Charman, Pennan Barry · 2020

P066 Development of an online tool to provide accessible and personalised information on life expectancy in cystic fibrosis Open

K. Tanner, F MALIK, Ted Smith, Rebecca Cosgriff, N. Medhurst , et al. · 2020

P065 Perspectives on personalised life expectancy information and how it should be presented: a qualitative study Open

Farah Malik, K. Tanner, Tristen Smith, Rebecca Cosgriff, N. Medhurst , et al. · 2020

P067 Using a national cystic fibrosis Registry to explore longitudinal outcome measures at an adult cystic fibrosis centre in comparison with other centres Open

Peter Barry, Alice Lau Aai Lee, S. Charman, Rebecca Cosgriff, Andrew Jones · 2020

WS23.4 Investigating associations between air pollution and the severity of cystic fibrosis in Great Britain Open

M. Saleem Khan, Nicholas J. Simmonds, Mireille B. Toledano, Rebecca Cosgriff, Frédéric B. Piel · 2020

A multinational report to characterise SARS-CoV-2 infection in people with cystic fibrosis Open

Rebecca Cosgriff, Susannah Ahern, Scott C. Bell, K. Brownlee, Pierre‐Régis Burgel , et al. · 2020

Changing epidemiology of the respiratory bacteriology of patients with cystic fibrosis–data from the European cystic fibrosis society patient registry Open

Elpis Hatziagorou, Annalisa Orenti, Pavel Dřevı́nek, N. Kashirskaya, Meir Mei‐Zahav , et al. · 2019

Fair selection of participants in clinical trials: The challenge to push the envelope further Open

Jane C. Davies, Sandra Scott, Rebecca Dobra, R. Brendell, K. Brownlee , et al. · 2019

P408 Patient preferences regarding lung transplant referral Open

N. Medhurst, Rebecca Cosgriff, R. Dunk, Anne Evans, Charlie Francis , et al. · 2019

P082 UK Cystic Fibrosis Registry data validation programme Open

E. Gunn, N Caine, Rebecca Cosgriff, Susan C. Charman, S.B. Carr · 2019

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