for Physicians
for Patients

ERKReg Governance

 

ERKReg Board

The registry is governed by a Registry Board composed of the following members:

  • The Chair
    • ERKNet coordinator, who is the custodian and responsible for data protection - Franz Schaefer
  • 5 members of ERKNet representing thematic areas
    • 2 congenital abnormalities – adult: Olivier Devuyst | pediatric: to be elected
    • 1 glomerulopathies + TMA – Marina Vivarelli
    • 1 tubulopathies and metabolic nephropathies – Elena Levtchenko
    • 1 ped CKD/Dialysis and Tx - Gema Ariceta
  • 2 representatives of the associated sub-registries 
    • Elected by all subregistry leads – Aude Servais + 1 to be elected
    • term: 3 years, one-time extension
  • 1 Board member of the ERA Workgroup Genes&Kidneys or Immunonephrology
    • chosen by the ERA WG – Roman-Ulrich Müller
    • watcher function
    • term: 3 years, one-time extension
  • 1 member of the ESPN Working Group for inherited renal disorders (WGIRD)
    • chosen by the ESPN WG – to be chosen
    • watcher function
    • term: 3 years, one-time extension
  • 1 representative of the European Patient Advocacy Group (ePAG) for rare renal diseases
    • chosen by and among the ePAGs - Claudia Sproedt
    • term: 3 years, one-time extension

 

updated: 19.07.2024