July 2026 Newsletter
University of Utah Launches Patient Registry
The University of Utah Health PKD Specialty Clinic has developed a voluntary PKD Registry for individuals residing in the continental United States.
Patient registries are valuable tools that help researchers better understand disease progression, improve patient care, facilitate medical research, and accelerate the development of new treatments.
According to Stephen Sammons, MD, Nephrologist and Assistant Professor of Medicine at the University of Utah, the new registry is intended "to help understand the population we serve, connect qualifying participants with clinical trials, and create a repository for future research."
Those interested in learning more about the registry or potential enrollment can contact the clinic at (801) 581-2772.
Genetic Diagnosis & Embryo Screening Resource
We're pleased to share our new educational resource, "Genetic Diagnosis & Embryo Screening in Autosomal Dominant PKD," developed in collaboration with Orchid Health. This article helps individuals and families affected by ADPKD better understand the role of genetic testing and embryo screening, including how these evolving technologies can support informed family-building decisions and help prevent PKD from being passed on to future generations.
Please note: Applicants accepted as part of our PKD-Free Babies grant program are eligible to receive an additional discount with Orchid Health should they choose to use Orchid for their preimplantation genetic testing services.
Help Us Reach More Families
As we prepare for PKD Awareness Month this September, we're inviting members of our community to help us expand our impact.
Whether you're interested in assisting with medical professional outreach, reviewing upcoming educational and marketing materials, or simply helping us spread the word, we'd love to hear from you.
You can also support our mission by following PKD-Free Alliance on social media (see all our channels at the end of this email), sharing our posts with your personal networks, and encouraging family members and friends affected by PKD to join our mailing list so they stay informed about the latest educational resources, research, and family planning initiatives.
If you're interested in enhancing our efforts, please contact PKD-Free Alliance's Chief Implementation & Operations Officer, Kevin, at ks@pkdfree.org.
Research Roundup
Researchers in Belgium studied 34 children with genetically confirmed PKD1-associated ADPKD and preserved kidney function, comparing urinary allantoin and adenosine levels with those of 31 healthy children. Published in Pediatric Nephrology, the study evaluated these compounds as potential non-invasive biomarkers of oxidative stress and early disease activity. The researchers found no significant differences in urinary allantoin, adenosine, or the allantoin/uric acid ratio between the two groups. Although urinary allantoin showed an inverse association with total kidney volume within the ADPKD group, it was not associated with another measure of disease severity (the Leuven Imaging Classification score), and its levels also declined with age. The authors concluded that these findings limit the usefulness of allantoin and adenosine as early non-invasive biomarkers for monitoring pediatric ADPKD and that further research is needed.
A new case report, published in Nutrition in Clinical Practice, describes a 23-year-old woman with ADPKD and preserved kidney function who followed a supervised plant-based ketogenic diet for 11 months. During that time, her albuminuria declined markedly (from 80 to 10 mg/g), while her estimated glomerular filtration rate (eGFR) remained stable and no clinically significant metabolic or electrolyte disturbances were observed. However, her total kidney volume increased from 617 to 709 cc, suggesting that structural disease progression may have continued despite improvements in kidney biomarkers. The authors conclude that the dietary approach appeared feasible and safe in this patient and may be associated with favorable biomarker changes, but they emphasize that controlled studies are needed to determine whether it provides clinical benefit in people with early-stage ADPKD.
The Zarpet Family Foundation has made a transformative $12 million gift to advance PKD research and care at the University of Colorado Anschutz PKD Center, led by Dr. Michel Chonchol. The funding will support several priorities, including developing new imaging biomarkers, launching phase II clinical trials of promising therapies, and investigating whether existing FDA-approved medications (such as metformin, SGLT2 inhibitors, and GLP-1 agonists) can be repurposed to slow PKD progression. Dr. Chonchol noted that people with PKD were excluded from many of the original clinical trials of these medications, making this an important area of investigation. The gift will also help recruit leading researchers and clinicians, establish a network of PKD centers to accelerate clinical trials, expand access to multidisciplinary care, and further Dr. Chonchol's vision of making CU Anschutz a national referral center for PKD-related kidney transplantation.
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