Table 1 AIMS of the European SHARE project

Identifying the specific needs for optimal care in PRD in each EU country in order to achieve minimum standards of care ( WP leader P. Dezolezalova, Prague)

The goal is to identify the specific needs for optimal care in PRD in each EU country. Optimal care includes diagnosis, management of disease and providing both drug- and non-drug therapies. The country specific needs should be identified within 18 months after the start of the project.

Identifying best practices and establishing minimal standards of care for the treatment of patients suffering from PRD (WP leader B Vastert, Utrecht)

After completing a systematic literature review on treatment of PRD, the available evidence will be graded by organizing consensus meetings. The best practices identified should provide for minimal standards of care in the treatment of PRD throughout Europe

Establishing platforms for the exchange of information, data and samples and for linking the existing networks and projects. Ensuring a better foothold of PRD patients in both research and treatment (WP leader N Ruperto, Genoa)

A portal within the PReS site will link with existing registers, projects, etc. Simultaneously we will harmonize the way in which information is stored by providing for best practices and patient information. We will provide patients with knowledge on their diseases, treatment and research, provide access to patient specific networks including a platform for patients to express their views and provide feedback from parents on this project (via inclusion of patients in this project).

Identifying best practices for obtaining ethical consent and for data and sample collection in PRD (WP leader J Kummerle-Descher, Tubingen)

Identify best practices for obtaining ethical consent, data and sample collection. These actions are aimed at enforce the exchange of these data and samples between European centres and should increase the availability of data to facilitate performing large clinical studies more effectively.

Ensuring implementation of the best practices for training programmes on PRD healthcare professionals (WP leader A Martini, Genoa)

The goal is to disseminate up-to-date knowledge on PRD to healthcare professionals by providing a proposal for state of art postgraduate education. This proposal should be available at the end of the project.