Table Of Content. A European Network of Centres of Reference for Dysmorphology... 2 Summary... 3 Coordinator, Leader contact and partners...

Transcription

1 Table Of Content A European Network of Centres of Reference for Dysmorphology... 2 Summary... 3 Coordinator, Leader contact and partners... 4 The Children's Memorial Health Institute IPCZD... 4 Katholieke Universiteit Leuven... 4 Casa Sollievo della Sofferenza CSS IRCC... 4 ASSISTANCE PUBLIQUE - HOPITAUX DE MARSEILLE... 4 Universitair Medisch Centrum Sint Radboud... 4 Outputs... 6 Completed clinical management guidelines... 6 Completed evaluation of DDS... 6 Completed evaluation of guideline project... 6 D01 - Interim report D02 - Interim report D03 - Final report... 6 Report on recommendations for conduct of networks of centres of Reference... 6 Page 1/7

2 A European Network of Centres of Reference for Dysmorphology JA GPSD [705038] 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 ( ) PROGRAMME PRIORITY: - CALL: Health Information (Hi 2006) TOPIC: Developing strategies and mechanisms for preventing, exchanging information on and responding to non-communicable disease threats, including genderspecific health threats and rare diseases EC CONTRIBUTION: EUR KEYWORDS: Diagnostic, Healthcare, Patients registries, Rare diseases and disorders, Treatment Page 2/7

3 PORTFOLIO: Rare diseases SUMMARY 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 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. Page 3/7

4 COORDINATOR, LEADER CONTACT AND PARTNERS COORDINATOR () Oxford Road M13 9PL Manchester United Kingdom PARTNERS The Children's Memorial Health Institute IPCZD Country: Poland Katholieke Universiteit Leuven Country: Belgium Casa Sollievo della Sofferenza CSS IRCC Country: Italy ASSISTANCE PUBLIQUE - HOPITAUX DE MARSEILLE Country: France Page 4/7

5 Universitair Medisch Centrum Sint Radboud Country: Netherlands Page 5/7

6 OUTPUTS Completed clinical management guidelines ed_clinical_management_guidelines.zip Completed evaluation of DDS ted_evaluation_of_dds.zip Completed evaluation of guideline project valu ation_clinical_management_guidelines.pdf D01 - Interim report 1 D02 - Interim report 2 Page 6/7

7 Powered by TCPDF ( D03 - Final report Report on recommendations for conduct of networks of centres of Reference report _on_network.pdf Page 7/7