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A European Network of Centres of Reference for Dysmorphology [DYSCERNE] [2006122] - Project
General objectives

To establish a network of existing centres of expertise for dysmorphology in order to raise standards for diagnosis, management, and information exchange and dissemination, and to serve as a demonstration project for other EU networks of centres of expertise.

Strategic relevance and contribution to the public health programme

Most of the 2 500 recognised dysmorphic conditions are rare but collectively are the cause of high morbidity. Centres of expertise have been established in the EU by designation or reputation for patients with dysmorphic diseases, yet to date there is no formal network for dysmorphology. A European network of centres of
expertise would capture complementary expertise, and exert gearing effects on the diagnosis and management of dysmorphic conditions, which in turn will have a positive impact on the care and well-being of affected people and their families. The network will form a nucleus for a much larger European network and provide
a model for the development of future networks of centres of expertise.

Methods and means

Formation of a Europe-wide network of centres of expertise.
Creation and implementation of a web-based electronic dysmorphology diagnostic system (DDS).
Development, piloting and dissemination of management guidelines for selected dysmorphic syndromes.

Expected outcomes period

Formalised network of centres of expertise for dysmorphology.
Functioning electronic dysmorphology diagnostic system (DDS).
Accredited management guidelines for selected dysmorphic conditions.

Start date: 01/06/2007
End date: 01/06/2010
Duration: 36 month(s)
Current status: Finalised
Programme title: First Programme of Community action in the field of public health (2003-2008)
EC Contribution: € 849 999,00
Portfolio: Rare diseases