News

The first-ever European PKD Patients Day webinar was held on Saturday 18 September 2021. Speakers included some of Europe’s leading experts in ADPKD - Autosomal Dominant Polycystic Kidney Disease.

Great news for women suffering from polycystic liver disease or PLD! The Dutch Expertise Center of polycystic diseases from the University Medical Center of Groningen (the Netherlands) received a grant worth 800.000E to set up a trial into the effect of anti-estrogenic therapy on PLD in women.

Most patients suffering from autosomal dominant polycystic kidney disease (ADPKD) have at least some liver cysts, but a small number of those suffering from ADPKD has many liver cysts which cause large liver volumes. Liver function is not affected by the disease, but if liver volume grows large, this can result in many somatic complaints and also psychological complaints, due to the enlarged abdominal volume. PLD can also occur as a separate disease – without cystic kidneys – but this is rarer. Approximately 8 in 10 (80%) of those suffering from this severe form of PLD are women, and it is thought that female hormones, like estrogen or progesterone, play an important role in the disease.

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.