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German registry collecting health data and samples from people with nephrotic kidney diseases

Follows children and adults with FSGS, minimal change disease or nephrotic syndrome, storing samples.

Key facts

Who runs it
Prof. Dr. Paul Brinkkoetter
Where
Germany12 sites in 1 countryChoose a country to see its sites
Trial code
Registry title
The FOrMe Registry (The German Focal Segmental Glomerulosclerosis and Minimal Change Disease Registry)
Status
Recruiting
People taking part
500 people, planned
Started
1 Apr 2018
Expected to end
31 Mar 2033
Type of study
Observational, 2 groups
Treatments tested
  • Biosampling
Record updated
17 September 2025

Who can take part

AI summary

From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.

The trial is looking for children with idiopathic nephrotic syndrome and adults with biopsy-proven FSGS or Minimal Change Disease (MCD). It collects samples such as blood, urine and tissue for research.

Age
Children: 17 years or younger. Adults: 18 years or older.
Sex
All sexes can join.
Disease stage
Children: idiopathic nephrotic syndrome (kidney disease with protein loss, cause unknown). Adults: primary or secondary FSGS or MCD shown by a kidney biopsy, or disease that came back in a kidney transplant, shown by biopsy.
Earlier treatment
People with a past kidney transplant can join only if a biopsy shows the disease came back.

Main reasons for not taking part

  • Past kidney transplant without biopsy-proven return of the disease
  • Another kidney filter (glomerular) disease causing the MCD or FSGS, as judged by the doctors
  • Not giving written consent
  • Expected inability to keep to the visit schedule

The registry criteria, word for word

Show all 10 criteriaShow less

Who can take part

  • written informed consent
  • 17 or less years of age
  • idiopathic nephrotic syndrome
  • written informed consent
  • older or equal to 18 years of age
  • biopsy-proven primary or secondary FSGS or MCD or biopsy-proven recurrence of disease in kidney transplant

Who cannot take part

  • Prior kidney transplant without biopsy-proven recurrence
  • A clinical diagnosis of other glomerular disease resulting in secondary MCD or FSGS as judged by the treating physicians
  • Refusal to provide written informed consent
  • (Anticipated) incompliance with visit schedule

This trial has no sites in United States.

It has sites in one country. Choose a country to see its sites.

About the trial

What the trial wants to find out

In a monocentric, later multicentric prospective approach the FOrMe registry (The German Focal Segmental Glomerulosclerosis and Minimal Change Disease Registry) aims to generate a longitudinal cohort of 150 pediatric cases of idiopathic nephrotic syndrome and 350 adult cases of biopsy-proven Minimal Change Disease (MCD) or Focal and Segmental Glomerular Sclerosis (FSGS) over 10 years. The registry will provide a repository for biomaterials such as blood samples, DNA, urine, feces, and tissue biopsies that will be accessible to collaborators to facilitate future research on pathogenesis, diagnostics, and treatment.

The 2 groups in the trial

  • A - Pediatric Cohort

    Pediatric patients until 18 years of age presenting with or diagnosed with idiopathic nephrotic syndrome or a biopsy-proven diagnosis of MCD or FSGS.

    Treatment: Biosampling

  • B -Adult Cohort

    Adult patients 18 years and above with a biopsy-proven diagnosis of primary or secondary FSGS or MCD.

    Treatment: Biosampling

Questions to ask the study team

  1. How often do I need to come in, and for how long each time?
  2. Are travel costs paid?
  3. Can I keep my own doctor?
  4. What happens if I want to stop?

Contact the study team: see the registry record → Contacts and Locations

Print a page for my doctor

Data and sources

Registry record
Listed on ClinicalTrials.gov.
Official title
The FOrMe Registry (The German Focal Segmental Glomerulosclerosis and Minimal Change Disease Registry)
Plain-language title
German registry collecting health data and samples from people with nephrotic kidney diseasesGenerated from the registry record. The registry title is the official one.
AI summary
From the trial's eligibility criteria. Read by machine on 15 November 2026.
Publications
Record updated
17 September 2025