The EAF report is structured as follows:
Forewords:
- Prof. Norbert Lameire (Belgium), Emeritus Professor of Medicine, Ghent University, Ghent, Belgium and Past Chair, European Kidney Health Alliance (EKHA)
- Dr Soledad Cabezón, Member of European Parliament
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