The global ADPedKD initiative aims to characterize in detail the most extensive international pediatric ADPKD cohort reported to date, providing evidence for the development of unified diagnostic, follow-up and treatment recommendations regarding modifiable disease factors. Moreover, this registry will serve as a platform for the development of clinical and/or biochemical markers predicting the risk of early and progressive disease.
Global ADPedKD is an international multicenter observational study focusing on childhood ADPKD. This collaborative project is based on inter-operable web-based databases, comprising 7 regional and independent but uniformly organized chapters, namely Africa, Asia, Australia, Europe, North America, South America and the United Kingdom. In the database, a detailed basic data questionnaire, including genetics, is used in combination with data entry from follow-up visits, to provide both retro- and prospective longitudinal data on clinical, radiologic and laboratory findings, as well as therapeutic interventions.
|Patients enrolled:||354 as of 3/2019, enrolment ongoing (goal: 1.000 patients)|
|Coordinating Center:||Department of Pediatric Nephrology, University Hospitals Leuven|
Currently, there are 70 centers participating, incl.
Active ESCAPE Participants: