Clinical and Translational Core

The overall goals of the Maryland PKD-RRC Clinical Translational Core are to expand and extend key resources to support the clinical investigation of Polycystic Kidney Disease. These resources will include a robust longitudinal observational study of a broadly representative sample of patients with PKD in the Mid-Atlantic United States. We will collect detailed information on family and personal medical history, kidney and liver imaging, kidney and liver function, patient-reported symptoms, genotype, vascular function, mental function, and medications. Patients will be followed longitudinally, with repeated clinical measures at 3 and 6 years, and with annual telephone visits to determine if end-stage kidney disease or other major PKD-related complications have occurred. Further, we will develop a collaborative Community Advisory Board (CAB) of highly accomplished and experienced patient advocates with training in community engagement, led by an expert in Community-Engaged research methods. This CAB will provide crucial insight and recommendations to ensure that recruitment materials, community outreach, participant education, and patient-reported symptoms and outcome assessments are performed using patient-centered and culturally appropriate methods. The CAB will help ensure that the PKD cohort reflects the range of ADPKD patients in the Mid-Atlantic region. A robust biospecimen repository, with specimens collected at 3- year intervals, will utilize consensus, standardized methods and processes for specimen collection, processing, and storage. Clinical and patient-level data will be incorporated into a Joint Clinical Database using a comprehensive variable-mapping procedure, for use by PKD-RRC investigators and by investigators external to the Consortium. Finally, we will expand and extend a human PKD tissue bank derived from PKD kidney specimens surgically removed at the University of Maryland Medical Center at the time of living donor kidney transplantation, in collaboration with the Mouse Models and Cell Systems Core.