Research at PKDF
Since the Foundation’s establishment in 1982, it has invested nearly $60 million in dedicated PKD research, clinical and scientific grant awards, fellowships, and scientific meetings. The Foundation’s financial commitment over the years has seen results on a local, national, and even global level, including initiating funding for young investigators from around the world, supporting innovative research ideas, and providing seed funding to allow researchers world-wide to apply for larger National Institutes of Health and Department of Defense grants.
The Research Department has also led the launch of the nation’s largest patient-powered ADPKD Registry, and brings together multiple research stakeholders in the PKD Outcomes Consortium. In 2022, the Foundation launched the Centers of Excellence in ADPKD program, to ensure access to specialized care and accelerate the translation of research studies to the clinic.
Together, these programs form a research continuum that spans from pre-clinical basic science to clinical trials to translational efforts to maximize efforts towards our goal to #EndPKD.
ADPKD Registry
Current participants
- Answer survey questions about your experience with ADPKD.
- Update us on your quality of life and PKD symptoms throughout the year.
- Find out about research studies for which you might qualify.
Join the Registry
PKD patients are experts of their own disease experience. This registry is patient-powered and patient-entered. You will answer questions about your own health and the impact PKD has had on your life. These data help create a key resource for researchers to better develop outcomes that reflect patient perspectives.
ADPKD Centers of Excellence
Centers of Excellence program
The PKD Centers of Excellence program is built upon the belief that the best way to provide ADPKD-centered care is through patient-focused, comprehensive care with the coordination and support of an integrated care team.
PKD Care Team Grants
The PKD Care Team grants fund the addition of dedicated staff time toward patient navigation or other relevant care team member at COEs.
PKDF’s Grants and Fellowships Programs
Funding opportunities
The principal goal of our research grant program is the development of clinical interventions for the treatment of PKD. Explore available funding opportunities.
Funded research
The Research Grant and Fellowship Programs will fund critical research to increase understanding of the genetic and pathological processes involved in PKD
Resources for PKD clinicians and researchers
Up to Date information about treating PKD
We partnered with UptoDate to provide medical professionals education on PKD.
PKD Outcomes Consortium
Created to facilitate clinical trial development by establishing a clear regulatory pathway to evaluate the effectiveness of potential treatments
ACT Alerts
Members of the PKD community have signed up for updates on new clinical research. Do you have a study open for enrollment?
Data resources in PKD research
By encouraging utilization of existing datasets, the Foundation hopes to bring new perspectives. Learn more here.
Kaplan award
See past winners or nominate your peers for the Lillian Jean Kaplan International Prize for Advancement in the Understanding of PKD
For patients who want to get involved in research
Sign up for a study or clinical trial in PKD
From observational studies to clinical trials, patients can help researchers unlock the secrets of PKD and find a treatment by participating in a study.
ADPKD Registry
The first in the U.S., the secure and patient-powered ADPKD Registry will advance research and help us #endPKD.
Become a stakeholder reviewer
Join our panel and provide a patient/caregiver perspective in PKDF’s annual research grant review process.
PKD treatment pipeline
Learn about the treatments for PKD currently being developed in the United States.
Getting a nephrectomy? Donate your PKD kidney to research
Our PKD tissue donation program provides patients with an avenue to contribute to the advancement of our understanding of PKD.
PKD Connect Conference Research Abstracts
The PKD Connect Conference (PKDCON) is an annual event that brings together every part of the PKD community—from patients and caregivers to researchers and physicians—to provide education, research updates, resources, and networking opportunities.
PKDCON 2022
PKDCON 2022 was also virtual, but the platform didn’t keep us from interacting with researchers.
PKDCON 2021
Our conference was virtual this year in order to keep our community safe during the COVID-19 pandemic.
Spotlight on PKDF grantees and publications
PKDF funds researchers and clinician scientists across the world who are dedicated to finding answers to help us better understand polycystic kidney disease. Here are some highlights of their work.
Harini Ramalingam, Ph.D.
University of Texas Southwestern Medical Center
“ADPKD is the most common genetic cause of renal failure. Current treatment options are limited. miRNAs have emerged as novel pathogenic regulators of ADPKD progression. Anti-miR-based drugs represent a new therapeutic modality to treat ADPKD patients.” – Harini Ramalingam, Ph.D.
Read one of Dr. Ramalingam’s recent publications:
Modulation of polycystic kidney disease by non-coding RNAs
A methionine-Mettl3-N6-methyladenosine axis promotes polycystic kidney disease
Whitney Besse, M.D.
Yale University
“Clinical genetic testing is not without challenges, but with careful analysis and collaboration, it has the potential to accelerate progress in our understanding of the mechanistic basis of kidney disease and development of targets for treatments that could alter the landscape of both inherited and acquired kidney disease.” – Whitney Besse, M.D.
Read some of Dr. Besse’s recent publications:
Genetic Analysis in Kidney Disease: Advancing Clinical Diagnosis and Research Discovery
Adult Inactivation of the Recessive Polycystic Kidney Disease Gene Causes Polycystic Liver Disease
Owen Woodward, Ph.D.
University of Maryland Baltimore
“My lab is working on growing our understanding of how kidney cysts start to grow. We grow kidney tubules in gel so they can form their normal 3D shape. Then because of their special engineering, we can cut out the PKD DNA just by adding a chemical and watching the tubes turn into cysts. We can stop this process at different time points to ask, “What has changed?” Which proteins have become more abundant, which are less, which genes are turned on, which are turned off? By knowing the very first things that start the cyst growing, maybe we can target this process and stop new cysts from forming. Fewer cysts mean lower disease burden.“ – Owen Woodward, Ph.D.
Read one of Dr. Woodward’s recent publications:
Molecular Structure of the PKD Protein Complex Finally Solved
Read more grantee and fellow spotlights here.
Page last updated November 2022