ADPedKD

ADPedKD

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.
 

    Design:

    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
    Participating Centers:

    Currently, there are 70 centers participating, incl.

    • Division of Pediatric Nephrology, Centre for Pediatrics and Adolescent Medicine, Heidelberg University Medical Centre, Heidelberg, Germany
    • Department of Pediatrics and Center for Molecular Medicine, University Hospital of Cologne, Cologne, Germany
     
    Contact Information:

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    Kim Rowan (study secretariat)
    Djalila Mekahli (study lead)
    Department of Pediatric Nephrology, University Hospitals Leuven
    Herestraat 49, 3000 Leuven, Belgium
    Tel: +32 16 343822
    Fax: +32 16 343842

     

    Active ESCAPE Participants:

    Bruno Ranchin