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The UK Kidney Association

Introduction

{"type":"doc","content":[{"type":"paragraph","content":[{"type":"text","text":"The UK Kidney Association (UKKA) is the oldest continuously active nephrology society in the world, gaining its current name after the merger of the British Renal Society and the Renal Association in 2021. As the leading professional body for the UK kidney community, the UKKA is dedicated to improving lives by supporting professionals in the delivery of kidney care and research. We have over 2,000 doctors, scientists, and multi-professional team members. "}]},{"type":"paragraph","content":[{"type":"text","text":"The UKKA is home to the UK Renal Registry (UKRR). The UKRR was set up in 1995 to record and analyse longitudinal health data about children and adults with kidney disease in the UK for audit, quality improvement and research purposes."}]},{"type":"paragraph","content":[{"type":"text","text":"Clinical data flow predominantly from the UK’s kidney centres and hospital laboratories, and patient-reported data are captured via surveys. The UKRR database is linked with a number of other health databases, including "},{"type":"text","marks":[{"type":"link","attrs":{"href":"https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.nhsbt.nhs.uk%2F&data=05%7C02%7Cclara.fennessy%40hdruk.ac.uk%7C23daef964d044ef3237408dd54e20d07%7C844cacb1702742639d8a18faa5bf0839%7C1%7C0%7C638760052075552803%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=8XrVhMm5EALPtXnokP8HpcQ%2FRHcXiSYzKl7rzKkXEg0%3D&reserved=0","target":"_blank","rel":"noopener noreferrer nofollow","class":null}}],"text":"NHS Blood and Transplant"},{"type":"text","text":", "},{"type":"text","marks":[{"type":"link","attrs":{"href":"https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fdigital.nhs.uk%2F&data=05%7C02%7Cclara.fennessy%40hdruk.ac.uk%7C23daef964d044ef3237408dd54e20d07%7C844cacb1702742639d8a18faa5bf0839%7C1%7C0%7C638760052075574705%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=kE7%2BoJulU9Up7QT41mUarovSfbcXCv0RSCxuHlXqtuY%3D&reserved=0","target":"_blank","rel":"noopener noreferrer nofollow","class":null}}],"text":"NHS Digital"},{"type":"text","text":", "},{"type":"text","marks":[{"type":"link","attrs":{"href":"https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.gov.uk%2Fgovernment%2Forganisations%2Fpublic-health-england&data=05%7C02%7Cclara.fennessy%40hdruk.ac.uk%7C23daef964d044ef3237408dd54e20d07%7C844cacb1702742639d8a18faa5bf0839%7C1%7C0%7C638760052075587147%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=XzDz9IgBAHTy6K2ctmRCOJ4uaC8CvXQTeaFgsdnEFvc%3D&reserved=0","target":"_blank","rel":"noopener noreferrer nofollow","class":null}}],"text":"Public Health England"},{"type":"text","text":" and "},{"type":"text","marks":[{"type":"link","attrs":{"href":"https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fnwis.nhs.wales%2F&data=05%7C02%7Cclara.fennessy%40hdruk.ac.uk%7C23daef964d044ef3237408dd54e20d07%7C844cacb1702742639d8a18faa5bf0839%7C1%7C0%7C638760052075599135%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=as%2BwGo4NbWoTObD6eCMLYta8n0HR24de0zXTZP%2Fjmf0%3D&reserved=0","target":"_blank","rel":"noopener noreferrer nofollow","class":null}}],"text":"NHS Wales Informatics Service"},{"type":"text","text":"."}]},{"type":"paragraph","content":[{"type":"text","text":"The UKRR team manages data collection, analysis, and reporting on 3 main areas:"}]},{"type":"orderedList","attrs":{"start":1,"type":"A"},"content":[{"type":"listItem","content":[{"type":"paragraph","content":[{"type":"text","text":"Children and adults in the UK on Kidney Replacement Therapy (approximately 70,000 people each year)"}]}]},{"type":"listItem","content":[{"type":"paragraph","content":[{"type":"text","text":"Acute Kidney Injury episodes reported in the UK (approximately 500,000 people each year)"}]}]},{"type":"listItem","content":[{"type":"paragraph","content":[{"type":"text","text":"Children and adults with advanced Chronic Kidney Disease in England and Wales."}]}]}]},{"type":"paragraph","content":[{"type":"text","text":"UK Kidney Association Papers: "},{"type":"text","marks":[{"type":"link","attrs":{"href":"https://www.ukkidney.org/audit-research/publications-presentations/papers","target":"_blank","rel":"noopener noreferrer nofollow","class":null}}],"text":"https://www.ukkidney.org/audit-research/publications-presentations/papers"}]}]}

Datasets (5)

UK Renal Registry - COVID-19 dataset

Dataset population size: 20,800

Health and disease

UK Renal Registry - Your Health Survey dataset

Dataset population size: 3,200

Health and disease

UK Renal Registry - AKI Lab Alerts Dataset

Dataset population size: 3,600,000

Health and disease

UK Renal Registry - Kidney PREM dataset

Dataset population size: 60,000

Health and disease

UK Renal Registry - CKD and AKI on Dialysis Dataset

Dataset population size: 300,000

Health and disease

Collections (0)

Analysis Scripts & Software (0)

Data Uses (100)

END STAGE KIDNEY DISEASE FROM GLOMERULONEPHRITIS IN THE UK – A REGISTRY BASED STUDY (GN-UNITY)

Manchester University NHS Foundation Trust, University of Manchester

EMPA-KIDNEY – the study of heart and kidney protection with empagliflozin

Nuffield Department of Population Health, University of Oxford

Pragmatic randomised trial of High Or Standard Phosphate Targets in End-stage kidney disease (PHOSPHATE)

Cambridge University Hospitals Foundation Trust, Cambridge University

Application of machine learning and artificial intelligence for validation of real time data for patients with chronic kidney disease (CKD)

University of Southampton

Defining strategies to address the supply and demand of deceased donor kidney transplantation with optimised equity of access

Liverpool University Hospital NHS Trust, University of Liverpool

Standardisation and description of medication data for patients with chronic kidney disease on kidney replacement therapy (KRT)

University of Southampton

Publications (1)

Evaluation of the effectiveness of remdesivir in severe COVID-19 using observational data from a prospective national cohort study

Arch BN, Kovacs D, Scott JT, Jones AP, Harrison EM, Rosala-Hallas A, Gamble CG, Openshaw PJM, Baillie JK, Semple MG.