CYSTic I
Research type
Research Study
Full title
CYSTic 1: An international consortium to build a longitudinal observational cohort of patients with Autosomal Dominant PolyCYSTic Kidney Disease (ADPKD)
IRAS ID
241461
Contact name
Albert C M Ong
Contact email
Sponsor organisation
Sheffield Teaching Hospitals NHS Foundation Trust
Duration of Study in the UK
1 years, 6 months, 0 days
Research summary
Autosomal dominant polycystic kidney disease (ADPKD) is the most common inherited kidney disease and the fourth most common cause for renal replacement therapy (RRT). ADPKD occurs in all ethnicities and affects both sexes although the incidence of end stage renal disease (ESRD), due to ADPKD, is reported to be higher in men than women. ADPKD is characterised by the development and growth of cysts within the kidney and other organs especially the liver. Currently, there is no cure for ADPKD and treatments have aimed to treat the signs and symptoms of the disease when they occur.
CYSTic I is an international research initiative designed as an observational study to investigate the cause, development and effects of ADPKD by exploring disease biomarkers, morbidity and mortality at different stages of ADPKD throughout its natural history. The CYSTic I study has been designed to build on previous research from the EuroCYST study (IRAS ID no. 124896, REC reference: 13/YH/0269) that recruited approximately 650 participants diagnosed with ADPKD, were 18yrs+ and were not receiving RRT. In this study participants provided blood, urine, and DNA samples, radiological imaging and health related quality of life information. The CYSTic I study will enable the management and analysis of previously unexplored data to produce outcomes that are of importance to patients with ADPKD. The study involves nine sites across the European community including; Germany (2), Belgium, the Netherlands, Italy, Spain, France, Czech Republic and the UK, whose investigators are experts in the field of ADPKD.
It is hoped that CYSTic I will be a precursor to a CYSTic II study that will continue with this research and enable the creation of an international data and sample bank to inform and facilitate further research to study the presentation, symptomatology and complications typical of the natural history of the disease.REC name
East of England - Cambridgeshire and Hertfordshire Research Ethics Committee
REC reference
18/EE/0247
Date of REC Opinion
24 Jul 2018
REC opinion
Favourable Opinion