Description and Cross-Sectional Analyses of 25,880 Adults and Children in the UK National Registry of Rare Kidney Diseases Cohort
Katie Wong, David Pitcher, Fiona Braddon, Lewis Downward, Retha Steenkamp, Sherry Masoud, Nicholas M. P. Annear, Jonathan Barratt, Coralie Bingham, Richard J. Coward, Constantina Chrysochou, David Game, Siân Griffin, Matt Hall, Sally Johnson, Durga Kanigicherla, Fiona Karet Frankl, David Kavanagh, Larissa Kerecuk, Eamonn R. Maher, Shabbir H. Moochhala, Jenny Pinney, John A. Sayer, Roslyn Simms, Smeeta Sinha, Shalabh Srivastava, Frederick W.K. Tam, Kay Thomas, Neil Turner, Stephen B. Walsh, Aoife Waters, Patricia D. Wilson, Edwin Wong, Karla Therese L. Sy, Kui Huang, Jamie Ye, Dorothea Nitsch, Moin Saleem, Detlef Böckenhauer, Kate Bramham, Daniel P. Gale, Sharirose Abat, Shazia Adalat, Joy O. Agbonmwandolor, Zubaidah Ahmad, Abdulfattah Alejmi, Rashid Almasarwah, Nicholas M. P. Annear, Ellie Asgari, Amanda Ayers, Jyoti Baharani, Gowrie Balasubramaniam, Felix Kpodo, Tarun Bansal, Alison Barratt, Jonathan Barratt, Megan Bates, Natalie Bayne, Janet Bendle, Sarah Benyon, Carsten Bergmann, Sunil Bhandari, Coralie Bingham, Preetham Boddana, Sally L. Bond, Fiona Braddon, Kate Bramham, Angela Branson, Stephen Brearey, Vicky Brocklebank, Sharanjit Budwal, Conor Byrne, Hugh Cairns, Brian Camilleri, Gary Campbell, A. Capell, Margaret Carmody, Marion Carson, Tracy Cathcart, Christine Catley, Karine Cesar, Melanie Chan, Houda Chea, James Chess, Chee Kay Cheung, Katy-Jane Chick, Nihil Chitalia, Martin Christian, Constantina Chrysochou, Katherine Clark, Christopher L. Clayton, Rhian Clissold, Helen Cockerill, Joshua Coelho, Elizabeth Colby, Viv Colclough, Eileen Conway, H. Terence Cook, Wendy L. Cook, Theresa Cooper
Abstract
IntroductionThe 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.MethodsRaDaR 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: 1) prevalent RaDaR patients receiving KRT compared with patients with eligible rare disease diagnoses receiving KRT in the UKRR; 2) patients recruited to RaDaR compared with all eligible unrecruited patients at two renal centres; 3) the age-stratified ethnicity distribution of RaDaR patients with Autosomal Dominant Polycystic Kidney Disease was compared to that of the English Census.ResultsWe 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 IMD quintile, p-value < 0.0001).ConclusionWe observed no evidence of systematic biases in recruitment of patients into RaDaR but the data provide empirical evidence of negative economic and social consequences (across all ethnicities) experienced by families with children affected by rare kidney diseases.