News

Written on 22 February 2025.

STOP-PKD Study (SGLT2-Inhibitors)

The STOP-PKD study investigates for the first time the safety and efficacy of SGLT2-inhibitors in ADPKD patients. Prof. Dr. Roman-Ulrich Müller, Professor of Translational Nephrology and spokesperson for the Center for Rare and Hereditary Kidney Diseases, has received funding from the German Research Foundation (DFG) for a multicenter drug study.

Coordinated with Dr. Philipp Scherrer, the STOP-PKD study examines SGLT2-inhibitor use in patients with autosomal dominant polycystic kidney disease (ADPKD). ADPKD is a genetic disease causing large cystic kidneys and progressive loss of kidney function. Affected individuals typically need renal replacement therapy (dialysis, kidney transplantation) by age 50-60.

Written on 15 February 2025.

KDIGO Clinical Practice Guideline for ADPKD

The KDIGO Clinical Practice Guideline for the Evaluation, Management, and Treatment of Autosomal Dominant Polycystic Kidney Disease (ADPKD) represents the first KDIGO guideline on this subject. The guideline was recently made available for public review and was published in 2025.

The guideline offers updated recommendations on therapies to slow disease progression, while stressing the importance of shared decision-making and individualised care.

Written on 11 February 2025.

ERA Collaboration with PKD International

In October 2024 PKD International and ERA (European Renal Association) signed an agreement for collaboration.

Written on 10 February 2025.

Kaplan Award for ADPKD

Lillian Jean Kaplan International Prize for Advancement in the Understanding of Polycystic Kidney Disease

The Lillian Jean Kaplan International Prize for Advancement recognizes individuals whose seminal scientific work constitutes tangible achievement toward improving knowledge and treatment of PKD. More than one prize may be awarded to residents of any country.

2024 Award Winner: Michael Caplan, M.D., Ph.D.

C.N.H. Long Professor and Chair of Cellular and Molecular Physiology and Professor of Cell Biology at Yale University School of Medicine.

Dapagliflozin-PKD Trial Led by Emily Cornec

Two investigator-initiated trials received funding. The DAPA-PKD trial is led by Emily Cornec-Le Gal and Dominique Guerrin and will run in France.

Written on 10 February 2025.

ADPKD Trials Update 2024/2025

Tolvaptan is the only approved drug therapy for adults with ADPKD at CKD stages 2-4. New trials are underway to assess children and ARPKD.

Many trials against several different targets have failed in recent years, including lixivaptan, lanreotide, pasireotide (target AVPR2); Venglustat (target lipid); everolimus, sirolimus (target mTOR); bardoxolone (target TF, NRF-2); simvastatin, etanercept (target metabolic pathways).

Written on 30 January 2025.

PKD International at Patient Consensus Meeting and European Kidney Forum 2025

PKD International participated in the Patient Consensus Meeting in Brussels, represented by President Flavia Galletti and board member Uwe Korst. The event was hosted by CompCure, a Danish organization dedicated to research and advocacy in rare kidney diseases, bringing together leading experts, patient organizations, kidney health advocates, and policymakers to define priorities for kidney health.

Distinguished speakers included Prof. Detlef Böckenhauer, representing the International Society of Nephrology (ISN), who delivered a presentation on "Kidney Health and the International and European Public Policy Agenda." The meeting included participation from EKHA, EKPF, FEDERG, and ERKNet.