Clinical studies

For drugs and therapies to be developed for PKD, clinical studies must be conducted. Patients play a key role in the research and development process by volunteering to participate in clinical studies. From observational studies to clinical trials, you can help researchers unlock the secrets of PKD and find a treatment by participating in a study.

Study Title
Clinical and Molecular Description of PKD1 and PKD2 Mutation Negative Carriers in ADPKD (GeneQuest) Info
Clinical and Molecular Investigations Into Ciliopathies Info
Clinical Care of Autosomal Polycystic Kidney Disease: Retrospective Analysis and Prospective PKD Genotyping (ADPKD) Info
Clinical Implications of DNA Analysis on ADPKD (DNAAA) Info
Consortium for Radiologic Imaging Studies of Polycystic Kidney Disease (CRISP II) Info
Core A: The Hepato/Renal Fibrocystic Diseases Translational Resource Info
Development and Assessment of The Polycystic Liver Disease Questionnaire (PLD-Q) Info
Evaluation of Gut Bacteria in Patients With Polycystic Kidney Disease Info
Identifying Genetic Modifiers of Severity in Autosomal Dominant Polycystic Kidney Disease Info
KoreaN Cohort Study for Outcome in Patients With Chronic Kidney Disease: A 10-year Longitudinal Cohort Study of Chronic Kidney Disease (KNOW-CKD) Info
New Quantitative MRI Parameters in Assessing Kidneys of Autosomal Dominant Polycystic Kidney Disease (MRI Pilot) Info
PKD Clinical and Translational Core Study (PKD Core) Info
Polycystic Kidney Disease Data Repository Info
Repository Study of Autosomal Dominant Polycystic Kidney Disease Info
The Eurocyst Initiative: Building a Network of ADPKD Reference Centers Across Europe Info
Transplant Registry: Patients Who May Require Transplantation and Those Who Have Undergone Transplantation of Liver, Kidney and/or Pancreas Info

All about clinical studies

PKD Clinical Studies Fast Draw

This video describes the role of clinical trials in achieving FDA approval for drug treatments.

Participate in clinical studies to discover PKD treatments and improve your health

For drugs and therapies to be developed for PKD, clinical studies must be conducted. Patients play a key part. Learn how you can help unlock the secrets of PKD and find a treatment by participating in a study.

Know what’s happening with
Alerts and updates

One of the largest impediments to clinical trial patient participation begins with awareness. We believed it was our goal to address this challenge and launched the Clinical Trials Awareness Program (CTAP), an aggressive program to increase awareness of PKD clinical studies among patients and families. The goal is to simplify the process of finding clinical studies for PKD patients in their geographic area by sending Accelerating Clinical Trials (ACT) alert emails about studies that are being conducted.