The Eurocyst Initiative: Building a Network of ADPKD Reference Centers Across Europe
Autosomal Dominant Polycystic Kidney DiseaseEuroCYST initiative aims to build a large, well-characterized cohort of Autosomal Dominant polyCYSTic Kidney Disease (ADPKD) subjects who are followed in a longitudinal observational cohort study has the potential to identify progression factors and biomarkers, and to assess disease stage specific mortality, morbidity and health care costs.
Repository Study of Autosomal Dominant Polycystic Kidney Disease
Autosomal Dominant Polycystic Kidney DiseaseThe design and establishment of the Polycystic Kidney Disease (PKD) Data Repository does not require, and may be constrained by, a narrowly conceived hypothesis. However, the PKD Repository has been designed to include demographic, clinical, biochemical, and genetic data that will further explore the natural history of the disorder and assess the factors that are likely to be associated with the progression of disease and the incidence of complications including renal failure, cardiovascular disease, and stroke.
Lixivaptan in a Single Subject With Intractable Pain Due to Polycystic Kidney Disease
Polycystic KidneyAbdominal pain, sometimes severe, is a known symptom of polycystic kidney disease (PKD) related to the cystic expansion. This study will investigate whether the vasopressin V2 receptor antagonist lixivaptan can alleviate intractable pain in a pediatric PKD patient who cannot tolerate the related vasopressin V2 receptor antagonist tolvaptan.
Analysis of Clinical and Molecular Genetic Data Influencing the Evolution and Response to Therapy...
Autosomal Dominant Polycystic Kidney DiseaseGenkyst is a regional cohort involving up to nephrologists working in private and public nephrology centers in the West of France. It registers clinical and molecular genetic data of all consenting patients with ADPKD from this area.
A Study Measuring Quality of Life, Treatment Preference and Satisfaction of ADPKD Patients in Europe...
Autosomal Dominant Polycystic Kidney DiseaseThis is a prospective, non-interventional study (NIS) measuring health-related quality of life (HRQoL), treatment satisfaction, and other patient-reported outcomes (PROs) of ADPKD patients in Europe.