Abstract
On Saturday the16th March 2019, AIRP participated at the 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.
Forty patient representatives from 15 countries, including Italy, Belgium, Finland, Denmark, France, Germany, Ireland, Lithuania, Netherlands, Spain, Sweden, Switzerland, Turkey, UK and USA joined the ADPKD experts and spokespersons from the European Kidney Health Alliance and EURORDIS.
The Summit was co-hosted by PKD International, a global network of patient organizations created to fight all forms of polycystic kidney disease (PKD), and the European ADPKD Forum (EAF), a multidisciplinary, international faculty of experts dedicated to improving the health and quality of life of people with ADPKD.
The event aimed to help, inform and empower patients and families to:
• be fully involved in the management of their own health and talk about ADPKD with their healthcare team and participate in making decisions about their care
• make the best use of the services available
• learn about ADPKD research and boost ADPKD advocacy.
The programme was designed and delivered together by patients and EAF experts from across Europe, based on the ADPKD Patient Route Map launched in 2018 (available at www.pkdinternational.org) and the EAF Multidisciplinary Position Statement on ADPKD Care (free online here at the Nephrology, Dialysis and Transplantation journal).
During the first plenary session of the day, Prof. Albert Ong, Prof. Djalila Mekahli and David Baron (PKD Foundation) updated the participants on some of the latest international developments in ADPKD research, namely the Polycystic Kidney Disease Outcomes Consortium (PKDOC), ADPKD paediatric registries and the Standardised Outcomes in Nephrology – Polycystic Kidney Disease (SONG-PKD) study.
Flavia Galletti (AIRP Italy) then moderated a session on the important steps that patients and caregivers can take, together with their healthcare team, to help protect their kidneys and reduce the risk of cardiovascular disease (including heart attacks and stroke). Prof. Tevfik Ecder discussed current recommendations on smoking cessation and managing high blood pressure, together with salt restriction and coffee intake. According to Prof. Ecder, these measures will become even more vital as obesity and diabetes, which also increase the risk of cardiovascular diseases, become more common. In addition, Prof. Mekahli explained how these aspects apply to children with ADPKD.
Other sessions, led jointly by patient representatives and experts from across Europe, focused on predicting the progress of ADPKD, treating liver cysts and pain, genetics and genetic testing, renal replacement therapy (i.e. dialysis and transplantation) and how patients can better understand and get involved in research. There were also plenary sessions on current research and patient advocacy in ADPKD, and on the perspective of industry.
Videos and slides from this very successful Summit will soon be available on the PKD International website. In addition, each breakout group resulted in a series of aspirations and priorities for ADPKD care and research in the future. These will be soon developed into a Summit ‘Manifesto’.
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