The proposed research aims to build a network of ADPKD Reference Centres in Europe, with standardized measurements, data collection and storage to establish a large scale pan-European ADPKD cohort of 1.100 adult ADPKD patients.
The multi-centre multi-national EuroCYST ADPKD Cohort will provide a versatile and powerful clinical research platform that enables EU researchers to study the pathogenesis, progression factors, morbidity, co-morbidity, and health economic issues in ADPKD patients over a broad range of renal function and renal volume. It will create a scaffold to facilitate the integration of current and upcoming technologies to ADPKD.
To build a cohort for a longitudinal observational study, 14 centres in 10 countries across Europe will enrol 1,100 adult ADPKD patients until the end of 2015. For optimal utilization of the funding, centres with expertise in ADPKD and already existing local clinical cohorts have been co-opted, so that efforts do not need to focus on recruitment, but can be invested into the establishment of the cohort infrastructure, uniform data recording and in depth analysis of several time and thus resource-consuming aspects, such as assisted patient interviews using standardized questionnaires. The enrolment phase started in summer 2013; within one year, 250 participants will be enrolled. To reach the target number of 1,100 ADPKD patients, each participating ADPKD centre will enrol at least 50 and up to a maximum of 100 patients within two years to ensure a representative distribution of patients across Europe.