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Newly Published Guideline Offers Hope for ADPKD Sufferers

February 12, 2025

Tufts Medical Center nephrologists Ronald Perrone, MD, and Craig Gordon, MD, MS are among an international group of PKD experts who authored the new guideline.

ADPKD guidelines

Autosomal dominant polycystic kidney disease (ADPKD) is a serious condition that affects between 1 in every 400 to 1,000 people worldwide. Despite the seriousness and pervasiveness of the condition, until now, no comprehensive guideline had existed regarding diagnosis, treatment and management of the disease.  The release of the KDIGO 2025 Clinical Practice Guideline for the Evaluation, Management, and Treatment of Autosomal Dominant Polycystic Kidney Disease (ADPKD), is an important step forward in improving global outcomes for ADKPD sufferers.

“The recommendations in this guideline represent the latest scientific support and evidence for diagnosis and management of people with ADPKD, at all stages of their disease,” says Tufts Medical Center’s Dr. Perrone, co-director of the Polycystic Kidney Disease Outcomes Consortium. “The guideline will be an excellent resource for people with ADPKD, their family members and for clinicians who treat people with ADPKD.  This document will make a real difference in the lives of people with ADPKD around the world.”

The long-awaited guideline was developed by an international group of PKD experts supported by a formal evidence review team. Its scope includes nomenclature, diagnosis, prognosis, and prevalence; kidney manifestations; chronic kidney disease (CKD) management and progression, kidney failure, and kidney replacement therapy; therapies to delay progression of kidney disease; polycystic liver disease; intracranial aneurysms and other extra-renal manifestations; lifestyle and psychosocial aspects; pregnancy and reproductive issues; pediatric issues; and approaches to the management of people with ADPKD.    

“The 2025 KDIGO guideline on ADPKD arose from nearly 4 years of hard work by the workgroup team and decades of scientific and clinical advances.” Says Dr. Gordon, Director of Tufts Medical Center’s PKD Center of Excellence and Associate Director of the KDIGO Evidence Review Team for the ADPKD guidelines. “The guideline is an excellent resource for clinicians from different specialties who manage individuals with ADPKD as well as for patient and families impacted by ADPKD. We are excited to apply the guidelines for our patients in Tufts Medical Center’s PKD Foundation-recognized Center of Excellence in ADPKD as well as see it employed globally”
 

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