News

On Saturday 16 March 2019, PKD International and the European ADPKD Forum (EAF) hosted the hugely successful 1st European ADPKD Patient Summit – a unique event designed to promote patient-centred care by providing an interactive forum for patients and experts to discuss ADPKD care, research and advocacy.

The ADPKD Summit agenda

View/download the slides of the ADPKD Summit in one PDF file.

Join the SONG-PKD Delphi Panel to help agree the outcomes which should be included in future ADPKD research.

What are outcomes?

Outcomes are the measurable effects that a treatment has on a patient. This can be a drug or other therapeutic intervention. The global SONG initiative is developing a number of core outcomes in kidney disease which all stakeholders doing research agree are critically important to measure and report in all studies and trials.

Using core outcomes means that trial results can be easily compared. They can also be used in guidelines to help patients, families, and their clinicians make informed decisions about treatments.

PKD International and the European ADPKD Forum (EAF) launched the first ADPKD Patient Route Map at the ERA-EDTA 2018 Congress.

The Route Map is an interactive resource designed to help educate and empower people affected by autosomal dominant polycystic kidney disease (ADPKD). It explains the types of care and support that patients and families should expect from their health service. The aim is to help patients and carers to manage their own health with their healthcare team, to talk about ADPKD with their nephrologist, to participate in making decisions about their own care, and to make the best use of available care and support services.

The report from the 2014 KDIGO Controversies Conference on ADPKD has been published.

The Conference was held in Edinburgh, United Kingdom on January 17-19, 2014. Drs. Vicente E. Torres (Mayo Clinic, USA) and Olivier Devuyst (University of Zurich, Switzerland) co-chaired this conference.

The objective of this conference was to assess the current state of knowledge related to the evaluation, management and treatment of ADPKD, to summarize the outstanding knowledge gaps, and to propose a research agenda to resolve standing controversial issues.

London, UK, 31 May 2014 – Today marks the formation of the European ADPKD Forum (EAF), a new multidisciplinary group of leading medical and patient group experts dedicated to improving the health and quality of life of people with ADPKD – a progressive and chronic genetic kidney disease.

The EAF initiative, co-chaired by Tess Harris, President of PKD International, and Dr Richard Sandford, Consultant Clinical Geneticist at Addenbrooke’s Hospital, Cambridge aims to:

• Increase awareness of the impact of ADPKD on patients and health services
• Recommend strategies at the health policy level to improve ADPKD care, based on the latest scientific evidence and expert insight
• Encourage and facilitate collaboration between the individuals and groups involved in the management of people with ADPKD.

ADPKD is a progressive and chronic systemic disease, for which there are no approved therapies, formal care pathways or clinical guidelines.^{1, 2} The condition, which accounts for 10% of all patients in end stage renal failure, is characterised by the development and expansion of fluid-filled cysts in the kidney, leading to a substantial increase in total kidney volume.^{1, 3, 4} Patients commonly suffer from acute and chronic pain, and cysts can affect other organs, notably the liver.^{1, 3, 4} Ultimately, ADPKD leads to kidney failure in the majority of affected people; approximately 50% of ADPKD patients will reach ESRD by age 59 and 75% will reach ESRD by age 70⁵.

In 2011, patient organizations and medical experts from around the world gathered in Geneva to establish PKD International (PKDI). The founding meeting aimed to unite efforts in supporting patients with polycystic kidney disease (PKD), fostering research, and advocating for better treatment options.