The EuroCYST Initiative

• Research type

  Research Study

• Full title

  The EuroCYST Initiative: Building a reference centre network across EUROpe to establish a large-scale longitudinal observational cohort of autosomal dominant polyCYSTic kidney disease patients

• IRAS ID

  124896

• Contact name

  Albert Ong

• Contact email

  a.ong@sheffield.ac.uk

• Sponsor organisation

  University of Zurich

• Research summary

  Autosomal Dominant Polycystic Kidney Disease (ADPKD) is the most common inherited kidney disease affecting approximately 750,000 people in Europe. This study will investigate the natural course of ADPKD with increases in kidney volume and the occurance of different co-morbidities that are related to ADPKD, and the impact disease progression has on health economics and patient outcome across the different stages of disease.

• REC name

  Yorkshire & The Humber - Bradford Leeds Research Ethics Committee

• REC reference

  13/YH/0269

• Date of REC Opinion

  16 Oct 2013

• REC opinion

  Further Information Favourable Opinion