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CaRE for LUTO-Registry 

Our clinic participates in a clinical registry for children with urinary flow obstruction due to malformations of the urethra (known as LUTO – lower urinary tract obstruction). This registry is called CaRE for LUTO (Cause and Risk Evaluation for lower urinary tract obstruction). The aim of this Germany-wide registry is to record the long-term progression of affected children. It examines important prognostic and risk factors that can influence kidney and other organ functions. The registry is coordinated by the University of Erlangen.

Who can participate?

  • Prenatal: This includes children with fetal megacystis, i.e., significant prenatal enlargement of the bladder (diameter >15 mm in the first trimester or persistent or newly occurring bladder enlargement in the second or third trimester), regardless of the chosen therapy.
  • After birth (postnatal): This includes children diagnosed with posterior urethral valves, urethral atresia, urethral stenosis, or prenatal megacystis, regardless of subsequent diagnosis. This applies to isolated cases as well as children with accompanying malformations or syndromic disorders.

How does participation work?

After providing you with detailed written and verbal information and obtaining your consent, we will register your child with the study management in Erlangen. There, instead of recording the name, a number will be assigned (for each child), under which all data will be recorded. You will also receive this number, which will ensure that participation remains guaranteed even if there is a change in the medical team providing care (e.g., after a move).

What data is collected?

Data collection is carried out by three departments:

  • Prenatal medicine (during pregnancy)
  • Pediatric nephrology, i.e., pediatric kidney medicinePediatric urology (after birth)
  • Pediatric urology (after birth)

Data is collected after birth during the first year of life and then once a year thereafter. This does not result in any additional hospital stays for you.

Further information

The main center for the registry is in Erlangen. You can find detailed information about the study there: www.careforluto.de (GER)

If you are interested, we, the prenatal diagnostics and pediatric nephrology team at UKGM Marburg, are happy to assist you.  You can reach us by email at: Lutoregister.MR@uk-gm.de (GER)