EURO-WABB is a European research project within the field of rare diseases. Project partners include clinicians, scientists and patient groups with representation from six EU countries and in collaboration with the Association du syndrome de Wolfram. It is a direct result of the first international meeting on Wolfram syndrome, set up by Mme Nolwenn Jaffree, In Paris October 2009.
Funded by the EU Directorate General for Health and Consumers (DG Sanco), the project began on 1 January 2011 and will run for three years. Through EURO-WABB, we hope to provide faster diagnosis, more research, and support better medical care for patients with Wolfram, Alström and Bardet Biedl (WABB) syndromes across Europe.
WABB syndromes are rare, with patients in every country. There are as yet no specific treatments for these diseases. Research is not coordinated well, and scattered in different laboratories throughout the EU. The lack of specific health policies for these diseases and the scarcity of expertise often result in delayed recognition by doctors, and difficult access to care for patients.
In the EURO-WABB project, we want to set up a registry of patients in Europe. This means that patients will be invited by their doctors to consent to their medical details being made anonymous, and added a central database of patients, held in University of Glasgow, UK. We hope that over 100 patients for each condition will agree to take part. We will then be able to compare clinical features and find patterns that will help us manage the diseases better. We can also offer timely molecular genetic testing for free, for patients that take part in the project. We hope the information collected will inform international guidelines on management of the diseases and the establishment of multidisciplinary clinics for patients around Europe.
We believe that this registry will be incredibly useful to researchers including pharmaceutical companies developing orphan drugs, endocrinologists caring for the patients, specialist health care providers and also for the rare diseases community. When other disease registries have been set up, they have resulted in an explosion of research in their disease areas. We hope that this registry will also lead to an increase in clinical research in WABB syndromes, other rare diabetes syndromes and also common diabetes and obesity.
EURO-WABB Study Coordinator, Ms. Amy Farmer, via email to firstname.lastname@example.org or to the Project Leader, Professor Timothy Barrett, via email to email@example.com. Please visit the project website, www.euro-wabb.org for more information.