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, 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 - Università della Campania | » Adult center | |
| Francesco Trepiccione | Naples, Italy, UOC Nephrology and Dialysis - Università della Campania | » 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 |