Service Communautaire d'Information sur la Recherche et le Développement - CORDIS

FP5

ECARUCA Résumé de rapport

Project ID: QLRI-CT-2002-02746
Financé au titre de: FP5-LIFE QUALITY
Pays: United Kingdom

Web site www.ECARUCA.net with public and password protected web pages, linked to the database

RESULT DESCRIPTION:
The website of the project, www.ECARUCA.net, consists of two sections: public pages that are freely available to each Internet user and restricted pages containing patient information that are only accessible for account holders. At the public pages general information is available including the objectives of the project, its rules and regulations, as well as downloadable information and informed consent forms in different European languages.

In addition to the public pages, the following restricted options on the ECARUCA website are available to professional account holders:
- Submit cytogenetic and molecular information;
- Submit clinical information;
- Search by chromosomal aberration;
- Search by clinical feature(s);
- List of all cases submitted by the centre of the account holder;
- List of all participating centres;
- Detailed Case of the Month information.

A unique feature of the website is the restricted page for parents of children whose data have been submitted to the ECARUCA database. A case-specific parent account is created for all newly submitted cases and sent to the referring clinician. With this account parents have access to the information of their own child in the database and can directly send follow-up information to the Clinical Database Managers.

DISSEMINATION:
The account holders and other interested visitors of the website are regularly updated by a Newsletter. The project is also promoted by a booth at the annual meeting of the European Society of Human Genetics, via the network of National Coordinators (see result 34581) and there are regular contacts with several patient support groups as well as with Eurochromnet, Eurordis and Orphanet. Articles extensively describing the ECARUCA project will be published in the Newsletter of the European Cytogeneticists Association and in the European Journal of Medical Genetics in the beginning of 2006.

INNOVATIVE FEATURES:
The website is a platform for all people interested in clinical cytogenetics. It brings together clinicians and researchers (see also result 34585 on research platforms) and provides information on rare chromosome disorders that can not be found elsewhere on the world wide web. Especially through the collection of clinical information on rare chromosome disorders an improvement of both research and patient care is achieved.

CURRENT STATUS AND USE OF THE RESULTS:
At the moment the website is visited more than 300 times per week and over 500 professionals in the field of clinical (cyto)genetics have an account. Through the website over 200 new cases have been submitted to the database in 2005 (see result 34580) and several research contacts have been established.

EXPECTED BENEFITS:
The website provides easy and free access to the database for doctors and scientists and is a good basis for collaboration in genotype-phenotype studies. ECARUCA can be considered to be a system that meets the needs of scientists, physicians and patients and their family members involved with rare chromosomal aberrations in an interactive way. It has the potential to become the international platform for clinical cytogenetics.

Informations connexes

Contact

John BARBER CK, (Coordinator ECARUCA Project Management Board)
Tél.: +44-01722-429080
Fax: +44-01722-338095
E-mail