Taskforce Registries & Outcomes

This Taskforce will work with the Network centers to accomplish two key aims: 

  • The development of a core registry capturing all patients with rare kidney diseases followed in the Network, which will be well interconnected with existing disease specific registries 
  • The identification of key quality and outcome indicators and their continuous monitoring in the Network

The Taskforce will align with the registry and quality initiatives in the other ERNs to achieve the highest possible level of harmonization and interoperability across the European Reference Networks.  

TaskForce Members

Franz Schaefer  Speaker
 Heidelberg, Germany, University Hospital  » Ped. center
Antonia Bouts  Amsterdam, Netherlands, Amsterdam, Academic Medical Center (AMC)  » Ped. center
Jaap Groothoff  Amsterdam, Netherlands, Amsterdam, Academic Medical Center (AMC)  » Ped. center
Gema Ariceta  Barcelona, Spain, Hospital Universitari Vall d'Hebron  » Ped. center
Giuseppe Remuzzi  Bergamo, Italy, Azienda Ospedaliera Papa Giovanni XXIII  » Adult center
Olivier Devuyst  Brussels, Belgium, Cliniques universitaires Saint-Luc - UCL  » Adult center
Jan Ulrich Becker  Cologne, Germany, University Hospital  » Ped. center
Max Liebau  Cologne, Germany, University Hospital  » Ped. center
Francesca Becherucci  Florence, Italy, Meyer Children’s Hospital  » Ped. center
Paola Romagnani  Florence, Italy, Meyer Children’s Hospital  » Ped. center
Aleksandra Zurowska  Gdansk, Poland, University Clinical Centre Gdansk  » Ped. center
Vera Cornelius  Heidelberg, Germany, University Hospital  » Ped. center
Stefanie Haeberle  Heidelberg, Germany, University Hospital  » Ped. center
Clémence Le Cornec  Heidelberg, Germany, University Hospital  » Ped. center
Burkhard Toenshoff  Heidelberg, Germany, University Hospital  » Ped. center
Tanja Wlodkowski  Heidelberg, Germany, University Hospital  » Ped. center
Elke Wühl  Heidelberg, Germany, University Hospital  » Ped. center
Elena Levtchenko  Leuven, Belgium, University Hospitals Leuven  » Ped. center
Aurelia Bertholet-Thomas  Lyon, France, Hôpital Femme Mère Enfant & Université de Lyon  » Ped. center
Lorenzo Calo  Padua, Italy, Azienda Ospedaliera di Padova  » Adult center
Rosa Vargas-Poussou  Paris, France, Hopital Europeen Georges Pompidou  » Ped. center
Laurence Heidet  Paris, France, Necker-Enfants Malades University Hospital  » Ped. center
Aude Servais  Paris, France, Necker-Enfants Malades University Hospital  » Adult center
Laura Massella  Rome, Italy, Rome, Bambino Gesù Children's Hospital  » Ped. center
Maria Evans  Stockholm, Sweden, Karolinska University Hospital  » Adult center
Dario Roccatello  Turin, Italy, University of Torino-Ospedale HUB Torino Nord  » Adult center
Marc Lilien  Utrecht, Netherlands, University Medical Centre  » Ped. center
Albertien vanEerde  Utrecht, Netherlands, University Medical Centre  » Ped. center
Gilvydas Verkauskas  Vilnius, Lithuania, Vilnius University Hospital Santaros Klinikos  » Ped. center
Stephen Walsh  External London, Royal Free Hospital 
Adrian Woolf  External Manchester, Manchester University Foundation Trust