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.
Imagine having the power to help unlock the secrets of polycystic kidney disease (PKD) and help researchers discover treatments. Participating in clinical studies is one of the most effective ways for people diagnosed with PKD to get involved in discovering and developing treatments. Learn about the different types of studies and how you can help advance PKD research.
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.
| Study Title | Location | Age range | Stage | Status | |
|---|---|---|---|---|---|
| Clinical and Molecular Investigations Into Ciliopathies | Maryland | 6 months - 80 years | No longer recruiting | Active | Info |
| PKD Clinical and Translational Core Study (PKD Core) | Maryland | 18 and older | Recruiting | Active | Info |
| Development and Assessment of The Polycystic Liver Disease Questionnaire (PLD-Q) | Minnesota | 18 and older | Recruiting | Active | Info |
| Clinical Care of Autosomal Polycystic Kidney Disease: Retrospective Analysis and Prospective PKD Genotyping (ADPKD) | New York | 18 and older | Recruiting | Active | Info |
| Polycystic Kidney Disease Data Repository | New York | 18 and older | Recruiting | Active | Info |
| Clinical and Molecular Description of PKD1 and PKD2 Mutation Negative Carriers in ADPKD (GeneQuest) | France | 16 and older | Recruiting | Active | Info |
| Lanreotide in Polycystic Kidney Disease Study (LIPS) | France | 18 and older | No longer recruiting | Active | Info |
| Metformin as a Novel Therapy for Autosomal Dominant Polycystic Kidney Disease (TAME) | Maryland and Massachusetts | 18-60 | No longer recruiting | Active | Info |
| PKD Biomarkers Repository Study | Kansas City - Missouri and Kansas | Birth to age 35 | Recruiting | Active | Info |
| A Study Measuring Quality of Life, Treatment Preference and Satisfaction of ADPKD Patients in Europe | Multiple Locations | 18 and older | Not recruiting | Active | Info |
| Curcumin Therapy to Treat Vascular Dysfunction in Children and Young Adults With ADPKD | Colorado | 6-25 | Recruiting | Active | Info |
| Analysis of Clinical and Molecular Genetic Data Influencing the Evolution and Response to Therapy of ADPKD Patients (Autosomal Dominant Polycystic Kidney Disease) | France | 18 and older | Recruiting | Active | Info |
| Canadian Medical Assessment of JINARC™ Outcomes Registry | Canada | 18 and older | Recruiting | Active | Info |
| Efficacy of Tolvaptan on ADPKD Patients | Japan | 18 and older | Not recruiting | Active | Info |
| Feasibility Study of Metformin Therapy in ADPKD | Colorado | 30-60 | Recruiting | Active | Info |
| Post-Marketing Surveillance Study of Tolvaptan in Patients With ADPKD | Japan | Child, adult, senior | Recruiting | Active | Info |
| Safety, Pharmacokinetics, Tolerability and Efficacy of Tolvaptan in Children and Adolescents With ADPKD | Multiple Locations | 4-17 | Not Recruiting | Active | Info |
| The German ADPKD Tolvaptan Treatment Registry | Germany | 18 and older | Recruiting | Active | Info |
| ARPKD and ARPKD-Related Diseases Database |
North Central and South America |
up to 35 | Recruiting | Active | Info |
| Using Preimplantation Genetic Diagnosis in Autosomal Dominant Polycystic Kidney Disease Patients: a Multicenter Clinical Trial | China | 20-35 | Recruiting | Active | Info |
| An international multicenter registry study on autosomal recessive polycystic kidney disease (ARPKD) - ARegPKD | Multiple locations | Any age | Recruiting | Active | Info |
| A Safety, Pharmacokinetic, Single Ascending Dose Study of Tesevatinib in Pediatric Subjects With Autosomal Recessive Polycystic Kidney Disease (ARPKD) |
Pennsylvania Wisconsin |
5-12 | Recruiting | Active | Info |
| Tesevatinib in Subjects With ADPKD | Multiple Locations | 18-60 | Recruiting | Active | Info |
| A Clinical Trial of Water Therapy for Autosomal Dominant Polycystic Kidney Disease | New York | 18-65 | Recruiting | Active | Info |
| A Phase 2 Trial of the Safety and Efficacy of Bardoxolone Methyl in Patients With Rare Chronic Kidney Diseases | Multiple Locations | 18-65 | Not Recruiting | Active | Info |
| Daily Caloric Restriction and Intermittent Fasting in Overweight and Obese Adults With Autosomal Dominant Polycystic Kidney Disease | Colorado | 18-65 | Recruiting | Active | Info |
| Assessment of longitudinal changes in endothelial function and oxidative stress in normotensive patients with ADPKD | Minnesota | 18-40 | Recruiting | Active | Info |
| Genetics of Brain Aneurysm Formation in Autosomal Dominant Polycystic Kidney Disease |
Maryland Connecticut |
18 and older | Recruiting | Active | Info |
| ELiSA, a Phase 2 Study of the Safety, Pharmacokinetics, and Pharmacodynamics of Lixivaptan in Subjects with Autosomal Dominant Polycystic Disease | Multiple Locations | 18-65 | Recruiting | Active | Info |
| Dynamic Measurement of Renal Functional Reserve as a Predictor of Long-Term Renal Function | Switzerland | 18 and older | Recruiting | Active | Info |
| Samsca PMS in ADPKD Patients | Korea | 18 and older | Recruiting | Active | Info |
| Statin Therapy in Patients with Early Stage ADPKD | Colorado | 25-60 | Recruiting | Active | Info |
| Tolvaptan-Octreotide LAR Combination in ADPKD | Italy | 18 and older | Not yet recruiting | Active | Info |
| Pulsed Oral Sirolimus in Autosomal Dominant Polycystic Kidney Disease (RAP) | Austria | 18 and Older | Recruiting | Active | Info |
| A Medical Research Study Designed to Determine if Venglustat Can be a Future Treatment for ADPKD Patients (STAGED-PKD) | Texas | 18 to 50 | Recruiting | Active | Info |
| ADPKD Alterations in Hepatic Transporter Function | North Carolina | 18 to 65 | Recruiting | Active | Info |
| Assessing a Dose‐Response Relationship of Hydralazine and Its Effects on DNA Methyltransferase 1 in Polycystic Kidney Disease Patients | Kansas | 18-65 | Recruiting | Active | Info |
| Transplant Registry: Patients Who May Require Transplantation and Those Who Have Undergone Transplantation of Liver, Kidney and/or Pancreas | Virginia | Child, adult, senior | Recruiting | Completed | Info |
| A Randomised Feasibility Trial of High Water Intake in Polycystic Kidney Disease | United Kingdom | 16 and older | Not yet recruiting | Completed | Info |
| Pilot Study of Niacinamide in Polycystic Kidney Disease (NIAC-PKD2) | Kansas | 18-60 | Not recruiting | Completed | Info |
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.