This section is dedicate to all types of European Initiatives that are related to the research on rare diseases.

EuroGenTest

EuroGenTest

Harmonizing Genetic Testing Across Europe

Genetic services in Europe, while based on high quality scientific know-how, suffer from an intolerably high level of technical errors and poor reporting, caused by a lack of structuring and complementarity at the European level and the absence of a common European objective to provide quality services to all its consumers now and in the future. Diverse and heterogeneous quality schemes, lack of reference systems and differing Member State (MS) regulations, have added to the overall disorganization and fragmentation of services. Nevertheless, genetic services face an ever-increasing number of requests for testing, while widespread susceptibility testing and pharmacogenetic tests are lurking on the horizon. With the active participation of stakeholders, the proposed EuroGentest NoE (Network of Excellence) intends to structure, harmonize and improve the overall quality of these services, while paying substantial attention to issues resulting from testing including legal, health policies and health economic impact, IPR (Intellectual Property Rights), ethical and social questions: confidentiality, informed consent, employment and insurance. The EuroGentest NoE will improve the organization and harmonization of external quality assessment/assurance schemes, facilitate the development of guidelines and support the accreditation/certification of the genetic services. In addition, collaboration between academic centers and the private sector on technology development and the validation of genetic tests, should generate more rapid translation and accurate, more economical and overall better testing technologies. A quality website, with all relevant information will be developed and made accessible to experts and customers. With the help of Parent and Patient Support Groups, the EuroGentest NoE will collect quality tools for education of different categories of stakeholders.Training for personnel both from within and from outside the EU will be provided. The already substantial number of female scientists involved in the EuroGentest NoE, will be further increased and a female scientist will assume responsibility of supervising gender issues.  Finally, the EuroGentest NoE aims at becoming a model for similar initiatives in developing countries and will provide appropriate support for their development. The proposed program will create a leading European Network of Excellence based on the four principles of medical ethics. 

E-Rare 2012 - Created by Toussaint Biger