A Global Online Platform on the Management of Children with Autosomal Dominant Polycystic Kidney Disease
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.
Kim Rowan (study secretariat)
Active ESCAPE Participants: