The European ADPKD Forum (EAF) is a multidisciplinary, international faculty of experts dedicated to improving the health and quality of life of people with autosomal dominant polycystic kidney disease (ADPKD).
The EAF Faculty comprises leading patient advocates together with practitioners and researchers from the fields of nephrology, hepatology and genetics.
On 29 January 2015, the EAF launched its first report, the EAF Report (English). This report is based on the latest scientific knowledge about ADPKD and insights from leading experts and patient advocates. It also features results from recent surveys of patients. The report was launched in Brussels at a meeting attended by patient advocates, representatives of various health stakeholder organisations, European Union officials and ADPKD experts.
The Report aims to:
The Report is endorsed by PKD International and EGAN, the Patient Network for Research and Health. It was developed in alignment with the Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference Report on ADPKD (Kidney International, in press). The report is accompanied by the EAF Brussels Declaration (English), which encapsulates the EAF recommendations and their rationale.
The EAF report is structured as follows:
Section 1 – Introduction
Section 2 – ADPKD: an overview
Briefly explains the epidemiology and genetic basis of ADPKD, the signs and symptoms, how disease progression occurs, and approaches to its diagnosis, assessment and management.
Section 3 – What does ADPKD mean for patients and families?
Explains how ADPKD and its treatment negatively affects patients, including the impact on quality of life, relationships and working lives, and how this is often under-recognised.
Section 4 – Impact of ADPKD on healthcare systems
Presents recent data on the contribution of ADPKD to healthcare resource usage and costs.
Section 5 – Unmet needs in ADPKD care
Identifies barriers to optimal diagnosis, assessment and treatment of ADPKD.
Section 6 – Therapeutic innovation in ADPKD
Discusses challenges to research and innovation in ADPKD.
Section 7 – Empowering patients with ADPKD
Explains why and how patients with ADPKD need to be empowered to help improve standards of care.
Section 8 – EAF policy recommendations
Recommends strategies to improve ADPKD across Europe in context with relevant European Union policy initiatives.
Section 9 – European ADPKD Forum members
Section 10 – Polycystic kidney disease organisations
Section 11 – Glossary
Section 12 – References
Prof. Dr Olivier Devuyst, University of Zurich, Zurich, Switzerland
Prof. Tevfik Ecder, Istanbul Bilim University, Istanbul, Turkey
Dr Ron T. Gansevoort, University Medical Center Groningen, Groningen, Netherlands
Dr José Luis Górriz, Hospital Universitario Dr. Peset, Valencia, Spain
Prof. Albert Ong, University of Sheffield, Sheffield, UK
Prof. Yves Pirson, Université catholique de Louvain, Brussels, Belgium
Prof. Vicente Torres, Mayo Clinic, Rochester, MN, USA
Prof. Gerd Walz, University Hospital Freiburg, Freiburg, Germany
The EAF was initiated by, and is solely supported by, Otsuka Pharmaceutical Europe Ltd. Neither the Co-Chairs of the EAF, nor the Faculty members, receive fees in respect of their roles in the initiative. The contents of the EAF Report are the opinions of the EAF Faculty and do not necessarily represent those of Otsuka.