Study Building a Research Group and Samples for Polycystic Kidney Disease
Builds a group of adults with polycystic kidney disease, collecting health information and samples.
Plain-language title generated from the registry record
Registry title: PKD Clinical and Translational Core Study
Key facts
- Where
- Baltimore, United StatesSee the site
Where in United States
- University of Maryland School of Medicine General Clinical Research CenterBaltimore, United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- University of Maryland, Baltimore
- Trial code
- NCT01873235
- Record updated
- 11 September 2025
- Original description
Advances in our understanding of the pathogenesis of autosomal dominant polycystic kidney disease (ADPKD) have opened up possibilities of new therapies to prevent disease progression. High quality clinical investigations in patients with ADPKD, however, pose significant challenges to investigators including limited access to patients with ADPKD,insufficient guidance by experienced investigators and lack of resources to conduct these studies.Read full original descriptionShow less
The Baltimore Polycystic Kidney Disease Clinical and Translational Core Study
Advances in our understanding of the pathogenesis of autosomal dominant polycystic kidney disease (ADPKD) have opened up possibilities of new therapies to prevent disease progression. High quality clinical investigations in patients with ADPKD, however, pose significant challenges to investigators including limited access to patients with ADPKD,insufficient guidance by experienced investigators and lack of resources to conduct these studies.
The Polycystic Kidney Disease Research Clinical and Translational Core (P30) aims to establish an infrastructure that will assist investigators in designing and conducting highest quality clinical and translational research focused on a diverse group of patients with ADPKD.
Objective 1: To establish a Mid-Atlantic cohort of ADPKD patients (N=350) with baseline clinical phenotyping performed at the General Clinical Research Unit of the University of Maryland School of Medicine.
Objective 2: To establish a state-of-the-art biobank of specimens from the ADPKD cohort including serum, plasma,urine and DNA.
Objective 3: To develop a collaborative network of physicians and practices in the Mid-Atlantic region who will contribute to the ADPKD cohort and will be willing to refer patients for future studies and trials.
Objective 4: To establish a web-based registry of ADPKD patients in the Mid-Atlantic area.
Inclusion: Age 18 and older; ADPKD confirmed by genetic testing or ultrasound criteria using modified Ravine criteria: with family history:several cysts per kidney (3 by sonography, 5 if by computerized tomography or MRI)without family history: 10 cysts (by any radiologic method) per kidney and exclusion of other cystic kidney diseases; Ability to provide written informed consent prior to initiation of any study procedures and the ability in the opinion of the investigator to comply with all requirements of the study; Glomerular Filtration Rate (GFR) greater than 15ml/min/1.73m2.
Exclusion: End Stage Renal Disease or presently on dialysis or a prior kidney transplant; --Pregnant, lactating, or intention to get pregnant in next 6 weeks; Current participation in a drug treatment trial; Another systemic disease such as cancer or lupus; Uncontrolled diabetes A1C 7.0 or more within 6 months of study visit; and/or on more than one oral hypoglycemic agent; Life expectancy less than 2 years; Non English speaking; Diabetic nephropathy.