ERKNet Survey | Outcome idiopathic nephrotic syndrome

The ERKNet working group on immune glomerulopathies is pleased to present a survey on the long-term outcome of childhood idiopathic nephrotic syndrome.
We are interested in studying the long-term outcomes of adult patients affected by idiopathic nephrotic syndrome from childhood. The purpose of this survey is to collect data that will improve the understanding of the natural history of idiopathic nephrotic syndrome.

Therefore we ask you to complete a 2-minute survey asking for the numbers of patients under your care.

Data submission will be open until 15th October 2021.

If you have any problems with filling in the data, please do not hesitate to contact Tanja Wlodkowski (tanja.wlodkowski@med.uni-heidelberg.de) or Giulia Bassanese(giulia.bassanese@med.uni-heidelberg.de).

Thank you very much!

Question Title

* 1. Please, indicate your name, surname, hospital affiliation, and your email address

Name and Surname

Hospital affiliation

Email Address

Question Title

* 2. How many patients with childhood-onset idiopathic nephrotic syndrome are following in your adult unit?

Please pay attention to the following eligibility criteria:

Inclusion criteria:
- Patients must be adult (>18 years old) with a documented diagnosis of idiopathic nephrotic syndrome with onset in childhood (<18 years at the time of first symptoms).
- Patients must have had at least one relapse or persistent proteinuria after the 18th birthday.

Exclusion criteria :
- Patients affected by genetic nephrotic syndrome.
- Patients who attained end-stage renal disease (ESRD) and/or were started on renal replacement therapy before age 18 years.

Question Title

* 3. Are you potentially interested in taking part in a second survey, where you will be asked to provide more detailed information about these patients?

Yes