ERKNet

The European Rare Kidney Disease Reference Network

  

Research Project

Project Title:

Complement abnormalities in primary membranoproliferative glomerulonephritis/C3G

Project Type:

Registry
Adjunct biobank: DNA, Serum, Plasma

Disease group(s):

Hereditary glomerulopathies, Immune glomerulopathies

Project Summary:

Aims of the study
This project is dedicated to improve the knowledge on the epidemiology, pathogenesis and clinical management of primary forms of MPGN I, II and III.
The first aim is to establish an Italian Registry of MPGN, in order to collect a critical mass of clinical data and biological materials from patients with primary MPGN. The establishment of the Registry will also allow the collection of the treatment data which will be used in a retrospective observational analysis in order to evaluate the efficacy of the different therapies in the treatment of MPGN.

Primary outcomes
Genetic counselling.

Secondary outcomes
Improvement of the clinical management.

Inclusion criteria
- Affected subjects (males and females of all ages) with biopsy-proven diagnosis of MPGN, as above defined.
- available unaffected relatives (males and females aged >=18 years) of patients with MPGN.
- for adults: written informed consent according to the guidelines of the Declaration of Helsinki.
- for children: written informed consent of parent(s) or guardian according to the guidelines of the Declaration of Helsinki. Anyway, if the minor is able to understand the informations received from expert personnel in managing minors, it will be considered his willing to refuse the participation in the study or to withdraw at any time.

Exclusion criteria
- Legal incapacity to provide informed consent, except in patients <18 years of age where the consent should be procured from the legal guardian.

Lead principal investigator(s):

Giuseppe Remuzzi, Bergamo

Co-investigator(s):

Daina Erica, Bergamo

Project Period:

07/2008   -   12/2020

Sponsors:

Non-profit foundation

Project web page:

http://registro.marionegri.it/frontend_eng/interno.php?id_studio=67 1 di

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