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Survey about patients with ectopic kidney phenotype

2.Survey - ECTOPICSR

Background information:
Ectopic kidney tissue, defined as pelvic kidney, horseshoe kidney or crossed fused ectopia, is a common phenotype within the spectrum of congenital anomalies of the kidney and urinary tract (CAKUT), but the reported frequencies of these anomalies vary significantly.
We performed a systematic review of articles to assess the incidence as well as the associated CAKUT phenotype and extra-renal anomalies in patients with renal ectopia. Additionally, we evaluated the incidence of glomerular hyperfiltration injury in these patients.



Objective(s) / Working hypothesis:
The goal is to identify patients within the ERKReg registry with an ectopic kidney phenotype, to further substantiate the prevalence and outcome of this understudied population within pediatric nephrology.
We aim to use these data to come to clinical recommendations for the management of patients. We propose to publish these recommendations within the ERKNet framework.
1.Contact person (name, surname)(Required.)
2.Contact email(Required.)
3.What is your centre and country of recruitment?(Required.)
4.Personal patient identifier
(Please provide a patient pseudonym in case of follow-up questions, and make sure it is kept locally at your centre).(Required.)
5.What is the type of ectopic kidney?(Required.)
6.What side is the ectopic kidney tissue located?(Required.)
7.What was the age at diagnosis (prenatal, postnatal (year))?(Required.)
8.What was the age at the last moment of follow-up (year)?(Required.)
9.What was the reason for clinical follow-up?(Required.)
10.Does this patient have associated CAKUT incl vesicoureteral reflux?(Required.)
11.Does this patient have extrarenal anomalies or a syndrome diagnosis?(Required.)
12.Does this patient have suffered from a febrile UTI?(Required.)
13.Does this patient have proteinuria?(Required.)
14.At what age did this patient develop proteinuria?(Required.)
15.Does this patient have hypertension (>p95 RR for sex/height)?(Required.)
16.At what age did this patient develop hypertension?(Required.)
17.Does this patient has an eGFR <60 ml/min/1.73m²?
18.At what age did this patient develop an eGFR <60 ml/min/1.73m²?
19.Did this patient develop kidney failure that required kidney replacement therapy or transplantation?
20.At what age did this patient develop kidney failure?