The Joint Clinical Database combines the the following resources:
- Kansas PKD RTCC | Clinical Research Core | Early PKD Observational Cohort Study Adult and Childhood (EPOC)
- Maryland PKD RTCC | Clinical and Translational Core | Adult ADPKD Cohort
- UAB-CHOP PKD RTCC | Clinical and Translational Core | ADPedKD-US Cohort | Pediatric ADPKD
- UAB-CHOP PKD RTCC | Pediatric ADPKD | Biospecimen Core
Contact: info@pkd-rrc.org
Data dictionary representing 501 harmonized PKD variables and accompanying data elements used for the multi-site registry derived from the three PKD-RRC sites. The data dictionary is formatted for, and ready for, import into REDCap, a secure web application for electronic data capture that is available for free and widely used by academic and other non-profit organizations worldwide. An accompanying guide provides metadata including more detailed description and explanation of each variable.
Request Clinical Data and/or Biospecimens Material Transfer Agreement/Data Usage Agreement
