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
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
Mario Schiffer  Hannover, Germany, Hannover Medical School  » Adult center
Burkhard Toenshoff  Heidelberg, Germany, University Hospital  » Ped. center
Elke Wühl  Heidelberg, Germany, University Hospital  » Ped. center
Elena Levtchenko  Leuven, Belgium, University Hospitals Leuven  » Ped. center
Stephen Walsh  London, United Kingdom, Royal Free Hospital  » Adult center
Aurelia Bertholet-Thomas  Lyon, France, Hôpital Femme Mère Enfant & Université de Lyon  » Ped. center
Adrian Woolf  Manchester, United Kingdom, Manchester University Foundation Trust  » Ped. center
Lorenzo Calo  Padova, Italy, Azienda Ospedaliera di Padova  » Adult center
Laurence Heidet  Paris, France, Necker-Enfants Malades University Hospital  » Ped. center
Aude Servais  Paris, France, Necker-Enfants Malades University Hospital  » Adult center
Rosa Vargas-Poussou  Paris, France, Necker-Enfants Malades University Hospital  » Ped. center
Laura Massella  Rome, Italy, Rome, Bambino Gesù Children's Hospital  » Ped. center
Maria Evans  Stockholm, Sweden, Karolinska University Hospital  » Adult center
Dario Roccatello  Torino, Italy, San Giovanni Bosco Hospital and University of Torino  » 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
Jan Ulrich Becker  External Institute of Pathology, University of Cologne 
Karolina Pawlak  External Children's HealthIreland (CHI) at Temple Street 
Arrigo Schieppati  External Mario Negri Institute 

European Reference Networks
ERKNet is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Commission.
For more information about the ERNs and the EU health strategy, please visit http://ec.europa.eu/health/ern