Written by Jane Pugh on 22 January 2025. Posted in Latest news.

First-Ever KDIGO Guidelines Set to Transform ADPKD Care

We're excited to announce the publication of the first-ever KDIGO (Kidney Disease: Improving Global Outcomes) Clinical Practice Guideline for the Evaluation, Management, and Treatment of Autosomal Dominant Polycystic Kidney Disease (ADPKD).

KDIGO is a global organisation dedicated to improving kidney disease care through evidence-based guidelines that help healthcare professionals provide consistent, high-quality treatment worldwide.

These groundbreaking guidelines are the result of a decade of global collaboration, bringing together doctors, researchers, and patient associations - including PKD Charity - to address the real challenges faced by patients and their families. The journey began at the Controversies Conference on ADPKD in Edinburgh in January 2014, and after years of dedicated effort, this collective work has culminated in a comprehensive document that integrates the best available research and expert insights.

What Does This Mean for UK ADPKD Patients and Families?

The new KDIGO guidelines provide practical tools for healthcare professionals to deliver consistent, high-quality care while empowering patients and families with evidence-based guidance. Key benefits include:

Access to the Latest Treatments: Recommendations for therapies such as tolvaptan, proven to slow disease progression, ensuring that patients across the UK receive state-of-the-art care.

Personalised Treatment Plans: The guideline promotes shared decision-making, enabling patients to be actively involved in their care with treatment plans tailored to their specific needs and lifestyle.

Comprehensive Management of Associated Conditions: Covering essential aspects like high blood pressure, chronic pain, and complications such as intracranial aneurysms, ensuring a holistic approach to care.

Advanced Diagnostic and Prognostic Tools: Practical guidance on using tools such as the Mayo Imaging Classification (MIC) and Predicting Renal Outcome in Polycystic Kidney Disease (PROPKD). These tools help assess risk and predict the progression of autosomal dominant polycystic kidney disease (ADPKD), enabling patients and clinicians to make informed decisions.

Patient-Centred Care: Recognising the diverse needs of the ADPKD community, ensuring equitable access and culturally sensitive healthcare delivery.

A Call for UK Implementation

Professor Albert Ong, PKD expert and member of the KDIGO ADPKD Guideline Working Group, shares his thoughts on the importance of the new guidelines:

"These guidelines are the result of years of high-level discussions among a global group of clinicians, patients, and scientists invited by KDIGO to develop evidence-based recommendations to articulate, advance, and harmonise standards of care for PKD patients around the world.

I very much hope that they will be adopted and fully implemented in the UK."

A Lasting Tribute to Tess Harris

We are deeply moved that this guideline is dedicated to our beloved Tess Harris, who served as CEO of PKD Charity until she passed away in March 2024. Tess’s unwavering dedication to improving the lives of those with ADPKD was unmatched.

Her passion and vision were instrumental in shaping this initiative, making this dedication a heartfelt tribute to her extraordinary legacy and the vital role of patient advocacy in advancing medical care.

A Symbol of Progress and Hope

This guideline is more than just a resource - it is a beacon of progress and possibility for millions of ADPKD patients worldwide. Together, we move forward towards better care, better treatments, and brighter futures for everyone affected by this condition.

View and download Guidelines.