Capacity Building for the Transfer of Genetic Knowledge into Practice and Prevention: An International Collaborative Network (CAPABILITY)

Basic data for this project

Description

The number of genetic tests is growing each year and increasing knowledge about gene-disease associations will lead to new opportunities to apply genetic/genomic knowledge in practice and prevention. Before genetic tests are introduced into general practice the benefits of their use must be evaluated. Worldwide, health care systems are facing the same challenges: 1) The need to develop an evidence-based evaluation process for genetic tests or other applications of genomic knowledge in transition from research into practice. 2) The need for capacity building to enable health care systems to make effective use of genetic/genomic applications with proven clinical utility. CAPABILITY is 3-year model project developed jointly by units 3 (Clinical Genetics, Community Genetics and Public Health) and 6 (Education) of the Network of Excellence: Genetic Testing in Europe ' Network for test development, harmonization, validation and standardization of services (EuroGentest) and by leading experts from: Argentina, Egypt and South Africa, the latter being currently engaged in major development projects to integrate genetic services in primary care and prevention in their countries. CAPABILITY will: - develop an analytic framework for evidence-based genetic test evaluation including the domains: efficacy (evidence of utility in controlled settings) and effectiveness (evidence of utility in real settings), - identify priorities for capacity building by a systematic needs assessment survey and - validate the project's approach by means of a demonstration project. CAPABILITY's overall objectives are to contribute to the efforts to establish and sustain a worldwide harmonisation process for quality standards for the integration of genetic test/genomic knowledge applications into practice and prevention and to serve as a model project for successful, sustainable collaboration between EU research centres and centres from developing countries.