scholarly journals P071 Linkage of the UK cystic fibrosis Registry with electronic health records in Wales: a new resource for research

2019 ◽  
Vol 18 ◽  
pp. S77
Author(s):  
R. Griffiths ◽  
D.K. Schlüter ◽  
A. Akbari ◽  
R. Cosgriff ◽  
D.F. Tucker ◽  
...  
Author(s):  
Jiao Song ◽  
Elizabeth Elliot ◽  
Andrew D Morris ◽  
Joannes J Kerssens ◽  
Ashley Akbari ◽  
...  

IntroductionDue to various regulatory barriers, it is increasingly difficult to move pseudonymised routine health data across platforms and among jurisdictions. To tackle this challenge, we summarized five approaches considered to support a scientific research project focused on the risk of the new non-vitamin K Target Specific Oral Anticoagulants (TSOACs) and collaborated between the Farr institute in Wales and Scotland. ApproachIn Wales, routinely collected health records held in the Secure Anonymous Information Linkage (SAIL) Databank were used to identify the study cohort. In Scotland, data was extracted from national dataset resources administered by the eData Research & Innovation Service (eDRIS) and stored in the Scottish National Data Safe Haven. We adopted a federated data and multiple analysts approach, but arranged simultaneous accesses for Welsh and Scottish analysts to generate study cohorts separately by implementing the same algorithm. Our study cohort across two countries was boosted to 6,829 patients towards risk analysis. Source datasets and data types applied to generate cohorts were reviewed and compared by analysts based on both sites to ensure the consistency and harmonised output.  DiscussionThis project used a fusion of two approaches among five considered. The approach we adopted is a simple, yet efficient and cost-effective method to ensure consistency in analysis and coherence with multiple governance systems. It has limitations and potentials of extending and scaling. It can also be considered as an initialisation of a developing infrastructure to support a distributed team science approach to research using Electronic Health Records (EHRs) across the UK and more widely. KeywordsTeam science, cross-jurisdictional data linkage, electronic health records


PLoS ONE ◽  
2018 ◽  
Vol 13 (12) ◽  
pp. e0210040
Author(s):  
Hamad Bastaki ◽  
Louise Marston ◽  
Jackie Cassell ◽  
Greta Rait

2019 ◽  
Vol 15 (1) ◽  
Author(s):  
Jennifer F. Summers ◽  
Dan G. O’Neill ◽  
David Church ◽  
Lisa Collins ◽  
David Sargan ◽  
...  

2016 ◽  
Vol 26 (8) ◽  
pp. 1900-1905 ◽  
Author(s):  
Helen P. Booth ◽  
◽  
Omar Khan ◽  
Alison Fildes ◽  
A. Toby Prevost ◽  
...  

2015 ◽  
Vol 84 (4) ◽  
pp. 237-247 ◽  
Author(s):  
Fiona Riordan ◽  
Chrysanthi Papoutsi ◽  
Julie E. Reed ◽  
Cicely Marston ◽  
Derek Bell ◽  
...  

2016 ◽  
Vol 19 (6) ◽  
pp. 687-692 ◽  
Author(s):  
Sara Burke ◽  
Vicki Black ◽  
Fernando Sánchez-Vizcaíno ◽  
Alan Radford ◽  
Angie Hibbert ◽  
...  

Objectives The objective was to use electronic health records to describe the use of cefovecin (Convenia; Zoetis UK), a third-generation long-acting injectable antimicrobial, in a UK population of cats attending first-opinion practices, and to compare the use of Convenia with the licensed uses described on the UK Convenia datasheet. Methods Data were obtained as an Excel database from the Small Animal Veterinary Surveillance Network for all feline consultations containing the word Convenia and/or cefovecin from 1 September 2012 to 23 September 2013 inclusive. Entries were classified according to body system treated, confirmation or suspicion of an abscess, evidence of microbiological evaluation being performed, any concurrent therapies given and whether any reason was given for use of Convenia over alternative antimicrobials. Data were exported to IBM SPSS Statistics and descriptive analysis performed. Results In total, 1148 entries were analysed. The most common body system treated was skin in 553 (48.2%) entries, then urinary (n = 157; 13.7%) and respiratory (n = 112; 9.8%). Microbiological evaluation was recorded in 193 (16.8%) entries, with visible purulent material most commonly cited (in 147 [12.8%] entries). A reason for prescribing Convenia over alternative antimicrobials was given in 138 (12.0%) entries; the most cited was an inability to orally medicate the cat in 77 (55.8%) of these entries. Excluding 131 entries where no body system or multiple body systems were described, the use of Convenia complied with a licensed use in the UK datasheet in 710 (69.8%) of 1017 entries. Conclusions and relevance Most administrations were licensed uses; however, most entries did not describe any microbiological evaluation, or a reason for prescribing Convenia over alternative antimicrobials. Further education of the public and the veterinary profession is needed to promote antimicrobial stewardship in the UK. Health records provide a valuable tool with which to monitor, both locally and at scale, the use of important therapeutics like antimicrobials. Information relevant to decision-making should be recorded in individual animal health records.


2020 ◽  
Author(s):  
Jemma L Walker ◽  
Daniel J Grint ◽  
Helen Strongman ◽  
Rosalind M Eggo ◽  
Maria Peppa ◽  
...  

Background This study aimed to describe the population at risk of severe COVID-19 due to underlying health conditions across the United Kingdom in 2019. Methods We used anonymised electronic health records from the Clinical Practice Research Datalink GOLD to describe the point prevalence on 5 March 2019 of the at-risk population following national guidance. Prevalence for any risk condition and for each individual condition is given overall and stratified by age and region. We repeated the analysis on 5 March 2014 for full regional representation and to describe prevalence of underlying health conditions in pregnancy. We additionally described the population of cancer survivors, and assessed the value of linked secondary care records for ascertaining COVID-19 at-risk status. Findings On 5 March 2019, 24.4% of the UK population were at risk due to a record of at least one underlying health condition, including 8.3% of school-aged children, 19.6% of working-aged adults, and 66.2% of individuals aged 70 years or more. 7.1% of the population had multimorbidity. The size of the at-risk population was stable over time comparing 2014 to 2019, despite increases in chronic liver disease and diabetes and decreases in chronic kidney disease and current asthma. Separately, 1.6% of the population had a new diagnosis of cancer in the past five years. Interpretation The population at risk of severe COVID-19 (aged ≥70 years, or with an underlying health condition) comprises 18.5 million individuals in the UK, including a considerable proportion of school-aged and working-aged individuals.


2021 ◽  
Author(s):  
Gita A Pathak ◽  
Antonella De Lillo ◽  
Frank Wendt ◽  
Flavio De Angelis ◽  
Dora Koller ◽  
...  

Background: Transthyretin (TTR) is a multi-function protein involved in the systemic transport of retinol and thyroxine. It also participates in the neuronal response to stress and proteolysis of few specific substrates. TTR is also the precursor of the fibrils that compromise organ function in the familial and sporadic systemic amyloidoses (ATTR). RNA-interference and anti-sense therapeutics targeting TTR hepatic transcription have been shown to reduce TTR amyloid formation. The goal of our study was to investigate the role of genetic regulation of TTR transcriptomic variation in human traits and diseases. Methods and Findings: We leveraged genetic and phenotypic information from the UK Biobank and transcriptomic profiles from the GTEx (Genotype-Tissue Expression) project to test the association of genetically regulated TTR gene expression with 7,149 traits assessed in 420,531 individuals. We conducted a joint multi-tissue analysis of TTR transcription regulation and identified an association with a specific operational procedure related to secondary open reduction of fracture of bone (p=5.46x10-6, false discovery rate q=0.039). Using tissue-specific TTR cis expression quantitative trait loci, we demonstrated that the association is driven by the genetic regulation of TTR hepatic expression (odds ratio [OR] = 3.46, 95% confidence interval [CI] = 1.85-6.44, p = 9.51x10-5). Although there is an established relationship of retinol and thyroxine abnormalities with bone loss and the risk of bone fracture, this is the first evidence of a possible effect of TTR transcriptomic regulation. Investigating the UK Biobank electronic health records available, we investigated the comorbidities affecting individuals undergoing the specific surgical procedure. Excluding medical codes related to bone fracture events, we identified a pattern of health outcomes that have been previously associated with ATTR manifestations. These included osteoarthritis (OR=3.18, 95%CI=1.93-4.25, p=9.18x10-8), carpal tunnel syndrome (OR=2.15, 95%CI=1.33-3.48, p=0.002), and a history of gastrointestinal diseases (OR=2.01, 95%CI=1.33-3.01, p=8.07x10-4). Conclusions: The present study supports the notion that TTR hepatic expression can affect health outcomes linked to physiological and pathological processes presumably related to the encoded protein. Our findings highlight how the integration of omics information and electronic health records can successfully dissect the complexity of multi-function proteins such as TTR.


2016 ◽  
Vol 179 (14) ◽  
pp. 358-358 ◽  
Author(s):  
F. Sánchez-Vizcaíno ◽  
M. Wardeh ◽  
B. Heayns ◽  
D. A. Singleton ◽  
J. S. P. Tulloch ◽  
...  

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