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Data Coverage

These figures summarise the number of participants in each RaDaR cohort and the availability of selected clinical information, including laboratory results and recorded kidney replacement therapy.

They provide an initial guide to the data held. The suitability of the available records for a particular study is assessed through the research application process.

Data updated: November 2026

Rare Disease Cohort Cohort Size Lab results via data feed Patients recorded as being on RRT Number of patients with Creatinine readings Mean number of Creatinine readings per patient
Alport Syndrome 1407 1061 448 1200 82
APRT Deficiency 10 7 2 10 70
Atypical Haemolytic Uraemic Syndrome 359 299 170 311 156
Autosomal Dominant Polycystic Kidney Disease 9859 8115 3743 8592 95
Autosomal Dominant Tubulointerstitial Kidney Disease (FUAN) 303 242 122 250 94
Autosomal Recessive Polycystic Kidney Disease/Nephronophthisis/Ciliopathy 394 336 147 365 113
BK Nephropathy 210 198 171 199 217
Calciphylaxis 87 75 67 75 224
CKD due to Genetic Factors in people of African ancestry 776 713 166 714 84
CMV Post Transplant 709 695 696 702 166
Congenital Anomalies of the Kidneys and Urinary Tracts 830 549 126 638 71
Cystinosis 210 201 116 200 148
Cystinuria 570 434 11 471 28
Early onset Hypertension 8 0 0 0
Fabry Disease 70 59 28 64 88
Fibromuscular Dysplasia 166 77 1 76 17
HNF1b Mutations 157 110 22 121 53
Hyperoxaluria 160 135 45 137 86
Idiopathic Nephrotic Syndrome 5439 4090 1231 4629 90
IgA Nephropathy 5945 5009 2701 5204 118
Inherited Renal Cancer Syndromes 490 127 4 127 17
Lupus Nephritis 483 277 26 298 78
Membranoproliferative Glomerulonephritis 1367 1121 655 1253 136
Membranous Nephropathy 3152 2448 611 2598 87
Mitochondrial Renal Disease 9 4 0 4 44
Monoclonal Gammopathy of Renal Significance 313 238 115 240 132
Pregnancy 898 682 270 789 94
Pure Red Cell Aplasia 9 6 6 6 179
Retroperitoneal Fibrosis 190 132 22 151 77
STEC-associated HUS 215 141 101 161 51
Tuberous Sclerosis 355 247 24 261 41
Tubulopathy 656 434 34 499 46
Vasculitis 6446 4659 1288 4986 90