PHGEN aims at conducting a networking exercise the general objectives of which include the consideration of the following tasks of Public Health Genomics (PHG): - The identification of authoritative information on genetic determinants for use by national administrations, professionals and other parties with an interest in the field of health, while respecting data protection requirements, in order to provide a sound basis for the monitoring of health. - The identification of methodologies and tools for health monitoring and surveillance of evidence-based disease prevention, for assessing and prioritising health interventions, and for aiding health system development by fully integrating genome-based knowledge in all of these tasks. - The sharing of experience on health risk reduction policies which aim at applying stratified strategies instead of “one strategy for all”. - The identification of strategies and mechanisms for preventing, exchanging information on and responding to non-communicable disease threats such as rare diseases with genetic origin, which are of such low prevalence that special combined efforts are needed to address them. In the long run, this interdisciplinary network can serve the European Commission as an “early detection unit” for horizon scanning, fact finding, and monitoring of genetic determinants relevant to public health and for identifying open questions regarding PHG.
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The geneal objective is to improve the capacity of the Health Promotion Agencies from 8 new EU members States to respond effectively to their major health needs in their countries.
The objective is also to strengthen the links between the National Agencies for Public Health and Health Promotion in the new Members States and accession countires and corresponding agencies in the "old" members states.
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We aim to develop an Information System to assess quality of health care delivered to very prematurely infants (birth weight less than 1.500 g and/or less than 32 wks) at different units, regions and EU countries. This could contribute to improve the health status of those high-risk infants, and detect any outcome inequalities that might exist, by:
1. create and validate a set of neonatal indicators to evaluate the specific rates of neonatal and post-neonatal mobility;
2. test the hypothesis that gestational age is a better indication of short- and long-term risks than birth weight;
3. use specific health indicators given by participating units for benchmarking to identify areas with opportunities to improve quality-of-care, and monitor their success, in selected areas, we will perform inter-regional comparisons to identify outcomes affected by variability of clinical practices and health delivery systems;
4. develop and validate a minimal follow-up dataset to assess the quality of life at 24 months, and an expanded questionnaire to be tested at selected institutions or regions;
5. assess the predictive value of perinatal indicators for the health status at 24 months; and develop software and tools to collect, transfer, validate, standardise and compare the perinatal and follow-up data collected, using up-to-date ICT.
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