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1. National Institute for Health Research Health Informatics Collaborative: development of a pipeline to collate electronic clinical data for viral hepatitis research

Author

Jim Davies, Charles Crichton, Eleanor Barnes, Ben Glampson, Abdulrahim Mulla, Kerrie Woods, Kosh Agarwal, David Anthony Smith, Tingyan Wang, Oliver Freeman, Hizni Salih, Philippa Clare Matthews, Kinga Anna Várnai, Christopher R. Jones, Luca Mercuri, A. Torm Shaw, Lydia N Drumright, Luis Romão, David Ramlakan, Finola Higgins, Alistair Weir, Eleni Nastouli, William Gelson, and Graham S. Cooke

Subjects
Computer applications to medicine. Medical informatics, R858-859.7
Abstract

Objective The National Institute for Health Research (NIHR) Health Informatics Collaborative (HIC) is a programme of infrastructure development across NIHR Biomedical Research Centres. The aim of the NIHR HIC is to improve the quality and availability of routinely collected data for collaborative, cross-centre research. This is demonstrated through research collaborations in selected therapeutic areas, one of which is viral hepatitis.Design The collaboration in viral hepatitis identified a rich set of datapoints, including information on clinical assessment, antiviral treatment, laboratory test results and health outcomes. Clinical data from different centres were standardised and combined to produce a research-ready dataset; this was used to generate insights regarding disease prevalence and treatment response.Results A comprehensive database has been developed for potential viral hepatitis research interests, with a corresponding data dictionary for researchers across the centres. An initial cohort of 960 patients with chronic hepatitis B infections and 1404 patients with chronic hepatitis C infections has been collected.Conclusion For the first time, large prospective cohorts are being formed within National Health Service (NHS) secondary care services that will allow research questions to be rapidly addressed using real-world data. Interactions with industry partners will help to shape future research and will inform patient-stratified clinical practice. An emphasis on NHS-wide systems interoperability, and the increased utilisation of structured data solutions for electronic patient records, is improving access to data for research, service improvement and the reduction of clinical data gaps.

Published
2020
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2. Incidence, Risk Factors, and Effect on Allograft Survival of Glomerulonephritis Post-transplantation in a United Kingdom Population: Cohort Study

Author

Rute Aguiar, Elli Bourmpaki, Catey Bunce, Bola Coker, Florence Delaney, Leonardo de Jongh, Giovani Oliveira, Alistair Weir, Finola Higgins, Anastasia Spiridou, Syed Hasan, Jonathan Smith, Abdulrahim Mulla, Ben Glampson, Luca Mercuri, Rosa Montero, Maria Hernandez-Fuentes, Candice A. Roufosse, Naomi Simmonds, Menna Clatworthy, Adam McLean, Rutger Ploeg, Jim Davies, Kinga Anna Várnai, Kerrie Woods, Graham Lord, Rishi Pruthi, Cormac Breen, Paramit Chowdhury, and Apollo - University of Cambridge Repository

Subjects
2 Aetiology, Transplantation, Rare Diseases, Kidney Disease, 3201 Cardiovascular Medicine and Haematology, Clinical Research, Prevention, Renal and urogenital, 32 Biomedical and Clinical Sciences, Organ Transplantation, 2.4 Surveillance and distribution
Abstract

BackgroundPost-transplant glomerulonephritis (PTGN) has been associated with inferior long-term allograft survival, and its incidence varies widely in the literature.MethodsThis is a cohort study of 7,623 patients transplanted between 2005 and 2016 at four major transplant UK centres. The diagnosis of glomerulonephritis (GN) in the allograft was extracted from histology reports aided by the use of text-mining software. The incidence of the four most common GN post-transplantation was calculated, and the risk factors for disease and allograft outcomes were analyzed.ResultsIn total, 214 patients (2.8%) presented with PTGN. IgA nephropathy (IgAN), focal segmental glomerulosclerosis (FSGS), membranous nephropathy (MN), and membranoproliferative/mesangiocapillary GN (MPGN/MCGN) were the four most common forms of post-transplant GN. Living donation, HLA DR match, mixed race, and other ethnic minority groups were associated with an increased risk of developing a PTGN. Patients with PTGN showed a similar allograft survival to those without in the first 8 years of post-transplantation, but the results suggest that they do less well after that timepoint. IgAN was associated with the best allograft survival and FSGS with the worst allograft survival.ConclusionsPTGN has an important impact on long-term allograft survival. Significant challenges can be encountered when attempting to analyze large-scale data involving unstructured or complex data points, and the use of computational analysis can assist.

Published
2022
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