Aim of the research

  • Building a large, well-characterized cohort of ADPKD subjects who are followed in a longitudinal observational cohort study has the potential to identify progression factors, and to assess disease stage specific mortality, morbidity and health care costs. This knowledge should translate into new diagnostic and therapeutic modalities.
  • Build a network of ADPKD reference centres across Europe to provide a translational research platform that will enable EU researchers to study the pathogenesis, progression factors, morbidity, co-morbidity and health economic issues in ADPKD patients over a wide range of kidney function and kidney volume.
  • Harmonize and develop common standards for ADPKD related research by a collaborative effort to establish a pan-European ADPKD cohort.
  • Harmonize and develop a common ADPKD biobank that includes standardized, quality-controlled biomaterials for translational research.
  • Create a scaffold to facilitate the integration of current and upcoming technologies to ADPKD practice.
  • Develop evidence-based best practice and needs assessments for ADPKD by utilizing the outcomes of the EuroCYST Initiative and by engaging with relevant stakeholders, including patient organizations, clinical and research networks, legislators, policymakers and the pharmaceutical industry.
  • Serve as an impetus to expand ADPKD training programs at all levels by establishing collaborative and educational liaisons as well as provide standard criteria for effective management protocols in ADPKD.
  • Improve awareness of the relevance of ADPKD including disease-specific complications and socioeconomic consequences of the disease among health care professionals and payers.