Wong, K;
Pitcher, D;
Braddon, F;
Downward, L;
Steenkamp, R;
Masoud, S;
Annear, N;
Barratt, J;
Bingham, C;
Coward, RJ;
et al.
Wong, K; Pitcher, D; Braddon, F; Downward, L; Steenkamp, R; Masoud, S; Annear, N; Barratt, J; Bingham, C; Coward, RJ; Chrysochou, T; Game, D; Griffin, S; Hall, M; Johnson, S; Kanigicherla, D; Karet Frankl, F; Kavanagh, D; Kerecuk, L; Maher, ER; Moochhala, S; Pinney, J; Sayer, JA; Simms, R; Sinha, S; Srivastava, S; Tam, FWK; Thomas, K; Turner, AN; Walsh, SB; Waters, A; Wilson, P; Wong, E; Sy, KTL; Huang, K; Ye, J; Nitsch, D; Saleem, M; Bockenhauer, D; Bramham, K; Gale, DP; RaDaR consortium
(2024)
Description and Cross-Sectional Analyses of 25,880 Adults and Children in the UK National Registry of Rare Kidney Diseases Cohort.
Kidney Int Rep, 9 (7).
pp. 2067-2083.
ISSN 2468-0249
https://doi.org/10.1016/j.ekir.2024.04.062
SGUL Authors: Annear, Nicholas Marshall Poon
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Abstract
INTRODUCTION: The National Registry of Rare Kidney Diseases (RaDaR) collects data from people living with rare kidney diseases across the UK, and is the world's largest, rare kidney disease registry. We present the clinical demographics and renal function of 25,880 prevalent patients and sought evidence of bias in recruitment to RaDaR. METHODS: RaDaR is linked with the UK Renal Registry (UKRR, with which all UK patients receiving kidney replacement therapy [KRT] are registered). We assessed ethnicity and socioeconomic status in the following: (i) prevalent RaDaR patients receiving KRT compared with patients with eligible rare disease diagnoses receiving KRT in the UKRR, (ii) patients recruited to RaDaR compared with all eligible unrecruited patients at 2 renal centers, and (iii) the age-stratified ethnicity distribution of RaDaR patients with autosomal dominant polycystic kidney disease (ADPKD) was compared to that of the English census. RESULTS: We found evidence of disparities in ethnicity and social deprivation in recruitment to RaDaR; however, these were not consistent across comparisons. Compared with either adults recruited to RaDaR or the English population, children recruited to RaDaR were more likely to be of Asian ethnicity (17.3% vs. 7.5%, P-value < 0.0001) and live in more socially deprived areas (30.3% vs. 17.3% in the most deprived Index of Multiple Deprivation (IMD) quintile, P-value < 0.0001). CONCLUSION: We observed no evidence of systematic biases in recruitment of patients into RaDaR; however, the data provide empirical evidence of negative economic and social consequences (across all ethnicities) experienced by families with children affected by rare kidney diseases.
Item Type: | Article | ||||||||
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Additional Information: | © 2024 International Society of Nephrology. Published by Elsevier Inc. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/). | ||||||||
Keywords: | RaDaR, ethnicity, rare kidney disease registry, rare kidney diseases, social deprivation, RaDaR consortium, ethnicity, RaDaR, rare kidney disease registry, rare kidney diseases, social deprivation | ||||||||
SGUL Research Institute / Research Centre: | Academic Structure > Institute of Medical & Biomedical Education (IMBE) Academic Structure > Institute of Medical & Biomedical Education (IMBE) > Centre for Clinical Education (INMECE ) |
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Journal or Publication Title: | Kidney Int Rep | ||||||||
ISSN: | 2468-0249 | ||||||||
Language: | eng | ||||||||
Dates: |
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Publisher License: | Creative Commons: Attribution 4.0 | ||||||||
PubMed ID: | 39081723 | ||||||||
Go to PubMed abstract | |||||||||
URI: | https://openaccess.sgul.ac.uk/id/eprint/116717 | ||||||||
Publisher's version: | https://doi.org/10.1016/j.ekir.2024.04.062 |
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