(Edinburgh, Scotland) — KDIGO (Kidney Disease: Improving Global Outcomes) has concluded a 3-day Controversies Conference on Autosomal Dominant Polycystic Kidney Disease (ADPKD) with consensus recommendations from more than 60 globally-recognized experts.

Vicente Torres, MD, PhD of the Mayo Clinic in Rochester, Minnesota and Olivier Devuyst, MD, PhD of the University of Zurich in Switzerland chaired the conference. Both are leading researchers in ADPKD, a disease which afflicts 12.5 million people worldwide and is a serious condition where cysts form in the kidneys impeding their function.

This was KDIGO’s 15th Controversies Conference which, for the first time, included patient representatives among its participants. Lab tests or clinical signs do not readily indicate several of the challenges ADPKD patients face. Patients suffer pain, body changes and psychosocial obstacles that are important but are not always recognized by clinicians.

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.

KDIGO Co-chair Dr. David Wheeler, University College, London said: “ADPKD is such a widespread and prevalent hereditary kidney disease that it is important for KDIGO to add to the current knowledge base. Thus we are responsible for translating the evidence we have examined into basic recommendations for care of this disease all around the world.”

He added, “The translation function is critical to our mission. Recommendations from this conference will be published in a peer-reviewed journal in six months and widely disseminated. KDIGO accepts the challenge of putting these concepts into daily medical practice globally.”

ADPKD is a genetic disease in which kidneys enlarged with cysts frequently lead to high blood pressure, infection and decreased kidney function. By age 55, patients with ADPKD have a 50% chance of needing dialysis or transplantation due to complete kidney failure. Despite its importance, diagnosis, evaluation, prevention and treatment of the kidneys and other organs affected by the disease vary widely around the world. There are currently no widely accepted clinical practice guidelines for this disease.

This disease is also important in other significant ways. 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 of life.

“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,” said Dr. Bertram Kasiske of the University of Minnesota, the other KDIGO Co-chair.

“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.”


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.


For further information please contact KDIGO Communications at [email protected]



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