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.
Forty patient and carer representatives from 15 countries – Belgium, Finland, Denmark, France, Germany, Ireland, Italy, Lithuania, Netherlands, Spain, Sweden, Switzerland, Turkey, UK and USA – joined ADPKD experts and spokespersons from the European Kidney Health Alliance and EURORDIS.
Held at the Novotel Brussels Airport Hotel, Brussels, Belgium, the Summit aimed to help, inform and empower patients and families to:
- be fully involved in the management of their own health, talk about ADPKD with their healthcare team and participate in making decisions about their care
- make the best use of available services
- 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 and the EAF Multidisciplinary Position Statement on ADPKD Care (free online here at the Nephrology, Dialysis and Transplantation journal).
“The ADPKD Summit was a unique international gathering of ADPKD patients, caregivers and medical experts. It was a true illustration of constructive collaboration, bringing the ADPKD Patient Route Map to life to empower patients at the centre of their care journey and to help them advocate to overcome the unmet needs that still exist in ADPKD.”
Tess Harris, President PKD International and EAF co-Chair.
“The EAF journey has been a real source of inspiration for me as a medical professional and researcher. Engaging directly with patients to co-develop the tools they need to share in manage their own health is of inherent value to the whole ADPKD community. The joint work of the EAF and PKD International offers an example of good practice that could benefit many other diseases areas.”
Richard Sandford, Cambridge University and EAF co-Chair.
The first plenary session of the day updated 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.
A series of breakout sessions, co-led by patients and experts, then focused on various important aspects of the ADPKD care pathway: self-care (the steps patients and caregivers can take, together with their healthcare team, to help protect the kidneys and reduce the risk of cardiovascular disease), 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 was also a ‘meet the industry’ session and a final plenary dedicated to patient advocacy in ADPKD.
In addition, each breakout group proposed a series of aspirations and priorities for ADPKD care and research in the future. These will be developed into a Summit ‘Manifesto’ – this will be posted here at the PKD International site so look out for it soon.
The European ADPKD Patient Summit was made possible by sponsorship from Baxter, Otsuka Pharmaceutical Europe Ltd, Palladio Biosciences and Sanofi Genzyme. It was organized by Interel.