The first-ever Controversies Conference organised by KDIGO on Autosomal Dominant Polycystic Kidney Disease (ADPKD) was held in Edinburgh from 16 to 19 January 2014.
Consensus recommendations were made by more than 60 globally-recognized experts.
Back row (left to right): Dwight Odland (PKD Foundation USA), Uwe Korst (PKD Germany), Tess Harris (PKD Charity UK), Dr Olivier Devuyst (University of Zurich, Switzerland/co-chair KDIGO Conference), Corinne Lagrafeuil (PKD France)
Front row (left to right): Flavia Galletti (PKD Switzerland), Nicole Harr (PKD Foundation, USA), Luisa Sternfeld-Pavia (PKD Italy), Kaori Winston (PKD Japan), Dr Vicente Torres (Mayo Clinic, USA/co-chair KDIGO Conference), Eiko Hodouti (PKD Japan), Brenda de Coninck (PKD Netherlands), Dr Eiji Higashihara (Kyorin University Japan)
This was KDIGO’s 15th Controversies Conference which, for the first time, included patient representatives among its participants from Europe, the US and Japan.
ADPKD affects an estimated 12.5 million people worldwide. It is a major public health burden and accounts for an estimated €2 billion in healthcare spending in the EU alone. ADPKD also has a major impact on patients’ lives. It causes pain and significant reduction in quality and longevity of life.
The conference began with plenary session talks that reviewed the current state of what we know about ADPKD. The breakout sessions that followed included in-depth discussions on its diagnosis, management of hypertension, kidney function decline and other manifestations in the kidney as well as non-kidney complications. There also was a topic group devoted to kidney failure due to ADPKD.
The conference chairs were Vicente Torres, MD, PhD of the Mayo Clinic in Rochester, Minnesota and Olivier Devuyst, MD, PhD of the University of Zurich in Switzerland.
Dr. Bertram Kasiske of the University of Minnesota, said: “This Controversies Conference recognized the implications of this disease on the lives of patients. The patient breakout group discussed recommendations for clinicians as well as fellow patients on coping with the disease.”
“Not all manifestations of this disease can be measured by lab tests. This is a classic example of the need to evaluate and appreciate patient-reported conditions. Clinicians everywhere should discuss these factors with patients and patients should likewise make them known to caregivers. This conference made significant recommendations regarding towards improving patient/clinician interaction.”
Later in 2014, the recommendations from the conference will be published in a peer-reviewed, international journal.
The next challenge will be to put all the recommendations into global medical practice.
KDIGO is a global not-for-profit organization, incorporated in Belgium and led by elected volunteers from many countries. It develops guidelines, holds cutting edge scientific conferences and implements its recommendations around the world.