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: March 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	1301	968	446	1103	82
APRT Deficiency	10	7	2	9	75
Atypical Haemolytic Uraemic Syndrome	346	284	164	292	155
Autosomal Dominant Polycystic Kidney Disease	9450	7707	3712	8168	93
Autosomal Dominant Tubulointerstitial Kidney Disease (FUAN)	283	223	121	231	94
Autosomal Recessive Polycystic Kidney Disease/Nephronophthisis/Ciliopathy	326	258	140	298	125
BK Nephropathy	195	182	160	182	216
Calciphylaxis	83	70	65	71	214
CKD due to Genetic Factors in people of African ancestry	727	268	164	602	67
CMV Post Transplant	704	627	693	677	162
Congenital Anomalies of the Kidneys and Urinary Tracts	566	325	80	396	69
Cystinosis	210	176	112	181	152
Cystinuria	547	366	10	405	29
Fabry Disease	67	54	27	57	90
Fibromuscular Dysplasia	129	68	0	68	15
HNF1b Mutations	137	96	21	104	49
Hyperoxaluria	151	124	43	126	88
Idiopathic Nephrotic Syndrome	5231	3875	1217	4416	87
IgA Nephropathy	5584	4623	2664	4782	119
Inherited Renal Cancer Syndromes	470	24	4	86	20
Lupus Nephritis	340	180	17	196	72
Membranoproliferative Glomerulonephritis	1321	1069	646	1206	134
Membranous Nephropathy	3072	2339	607	2508	84
Mitochondrial Renal Disease	6	2	0	2	79
Monoclonal Gammopathy of Renal Significance	292	216	115	220	130
Pregnancy	861	657	264	750	91
Pure Red Cell Aplasia	9	6	6	6	174
Retroperitoneal Fibrosis	184	121	22	145	71
STEC-associated HUS	204	124	90	140	54
Tuberous Sclerosis	330	227	23	238	41
Tubulopathy	612	392	34	450	45
Vasculitis	6115	4236	1268	4599	90