Otsuka Pharmaceutical Europe has launched a European forum to help lead awareness of the rare genetic condition autosomal dominant polycystic kidney disease (ADPKD).
European ADPKD Forum (EAF) brings together medical and patient group experts dedicated to improving the health and quality of life of people with the disease, which causes multiple cysts to develop on the kidneys
The project to develop the forum was co-chaired by Tess Harris, president of PKD International (an alliance of patient organisations dedicated to a cure for polycystic kidney disease), and Dr Richard Sandford, consultant clinical geneticist at Addenbrooke’s Hospital, Cambridge. It aims to:
• Increase awareness of the impact of ADPKD on patients and health services
• Recommend strategies at the health policy level to improve ADPKD care, based on the latest scientific evidence and expert insight
• Encourage and facilitate collaboration between the individuals and groups involved in the management of people with ADPKD.
“Healthcare professionals and the wider public simply aren’t as aware of ADPKD as they should be and this must be urgently addressed,” said Harris.
“The EAF initiative will do this by identifying areas for improvement in care inequalities and by establishing a framework in which expertise and learnings can be shared to tackle the ongoing concerns faced by the ADPKD patient and care-giving community throughout Europe.”
The forum is currently working on a report that will include new evidence on the emotional and physical burden of the disease, taken from the largest ever survey of ADPKD patients. The report will also explore the burden of ADPKD on European healthcare systems.
It will also provide strategic, policy-focused recommendations to promote standardised care in line with current EU health initiatives. In addition, the report will also explore potential barriers to the development of innovative treatments for ADPKD.
“This report will provide the most robust overview yet of the wide-ranging impact of ADPKD, how health services are currently set up to meet this challenge, and what changes are needed to improve care development and delivery,” said Dr Sandford.
Otsuka’s interests in the area include the treatment Samsca (tolvaptan), which was turned down last year by the FDA for use as an ADPKD treatment, but is approved in Japan and is under review in Europe.
