Abstract: INFO06-SA
ADPKD Registry: Researcher Portal
Session Information
- Informational Posters - 3
November 08, 2025 | Location: Exhibit Hall, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Genetic Diseases of the Kidneys
- No subcategory defined
Authors
- Westerfield, Vanessa, PKD Foundation, Kansas City, Missouri, United States
- Chen, Christopher, PKD Foundation, Kansas City, Missouri, United States
Description
The Autosomal Dominant Polycystic Kidney Disease (ADPKD) Registry is an online database of more than 3,500 current ADPKD patients, of all ages, in the United States. The Registry collects patient-reported outcomes data on topics such as family history, diet and lifestyle, quality of life, healthcare access and utilization, etc. Additionally, participants have the option to link their electronic medical records (EMR) via patient-mediated donation. These health data are automatically updated with current patient information. The ADPKD Registry is a unique dataset and is a valuable resource to patients and their clinicians. In addition, the ADPKD Registry can help accelerate enrollment into clinical trials by connecting patients to the clinical trials they are eligible for. Until recently, the data within the ADPKD Registry was inaccessible to external personnel.
In June 2025, the PKD Foundation introduced the ADPKD Registry: Researcher Portal, which allows interested parties to view pieces of the de-identified, aggregated dataset and request access to the data for research related purposes. The key features of the portal include Data Summary, Data Browser, and Data Request. The Data Browser highlights six characteristics relevant to the Registry: age, CKD stage, eGFR, race/ethnicity, serum creatinine, and transplant status. Those who create a Researcher Portal login can build cohorts based on the six featured characteristics. The Portal also provides a Data Summary page that gives insight into the geographic distribution of all participants, geographic distribution of EMR connected participants, CKD stage, clinical trial eligibility. Lastly, researchers can submit a Data Request to formally request access to the ADPKD Registry data. A Data Request must include study objectives, hypothesis, background, sampling strategy, project details, and details about the investigative team. Each Data Request will be reviewed by the PKD Foundation Research team which approves release of any de-identified patient data.
The ADPKD Registry: Researcher Portal creates a pathway for collaboration and data sharing between researchers, clinicians, and industry. With this tool, the Registry will continue to accelerate clinical trial enrollment and inform therapeutic development. The next iteration of the ADPKD Registry will integrate genetic information and imaging, further enhancing the depth of the dataset.