The FOrMe Registry (The German Focal Segmental Glomerulosclerosis and Minimal Change Disease Registry)

MI-összefoglaló

A vizsgálat saját részvételi feltételeiből. Gép olvasta ki az oldalon álló regiszterszövegből, ezért tévedhet. Hogy ki vehet részt, azt a lenti regiszterszöveg és a vizsgálat csapata dönti el.

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.

Életkor

Children: 17 years or younger. Adults: 18 years or older.

Nem

All sexes can join.

A betegség stádiuma

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.

Korábbi kezelés

People with a past kidney transplant can join only if a biopsy shows the disease came back.

A részvétel fő kizáró okai

• 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

A regiszter feltételei, szó szerint

Mit akar kideríteni a vizsgálat

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.

A vizsgálat 2 csoportja

• 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.

  Kezelés: Biosampling

• B -Adult Cohort

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

  Kezelés: Biosampling