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=200) 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.
Biosamples will be collected and stored (plasma, serum, urine, and DNA)
- 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) less than 20ml/min/1.73m2
- End Stage Renal Disease or presently on dialysis or a prior kidney transplant
- Pregnant, lactating, or intention to get pregnant in next 6 weeks
- Another systemic disease such as cancer or lupus
- Life expectancy less than 2 years
- Current participation in a drug treatment trial
- Non English speaking
- Uncontrolled diabetes A1C 7.0 or more within 6 months of study visit; and/or on more than one oral hypoglycemic agent
- Diabetic nephropathy
Charalett E. Diggs, RN MSN