ERKNet

The European Rare Kidney Disease Reference Network

  

QoL & Transition

Aims:

To measure and compare quality of life of children and adults PedsQL and HRQoL/KDQL with rare kidney diseases and to develop and validate improvement strategies.

To evaluate the actual situation of transition structures and financing in the ERKNet centers and to develop and implement transition guidelines.


TaskForce Members

Lars Pape  Speaker Hannover, Germany, Hannover Medical School  » Ped. center
Gema Ariceta  Barcelona, Spain, Barcelona Hospital Universitari Vall d'Hebron  » Ped. center
Larissa Kerecuk  Birmingham, United Kingdom, Birmingham Women´s and Children´s Hospital  » Ped. center
Giulia Bassanese  Heidelberg, Germany, University Hospital  » Ped. center
Franz Schaefer  Heidelberg, Germany, University Hospital  » Ped. center
Tanja Wlodkowski  Heidelberg, Germany, University Hospital  » Ped. center
Giovanni Capasso  Naples, Italy, UOC Nephrology and Dialysis - Naples Università della Campania Luigi Vanvitelli  » Adult center
Francesco Trepiccione  Naples, Italy, UOC Nephrology and Dialysis - Naples Università della Campania Luigi Vanvitelli  » Adult center
Natalie Biebuyck  Paris, France, Necker-Enfants Malades University Hospital  » Ped. center
Pietro Manuel Ferraro  Rome, Italy, Gemelli Hospital  » Adult center
Britta Maecker  External MHH, pediatric Oncology 
Brenda de Coninck  Patient representative  
Marieke van Meel  Patient representative