November 13-15, 2006

Background

The specific objectives of this meeting were to:

• Identify conditions of particular importance in the region (e.g. metabolic disorders, phenylketonuria, spinal muscular atrophy, deafness, hemoglobinopathies, hypothyroidism);
• Determine the research and infrastructure needs in establishing newborn screening programs;
• Identify areas for research collaboration that will strengthen regional newborn screening capacity;
• Assess the interest North African and Middle Eastern countries in developing/expanding newborn screening activities;
• Provide models of newborn screening systems and the infrastructure needs for each component of the system;
• Evaluate cultural and social issues surrounding newborn screening;
• Identify existing research and technical training opportunities related to newborn screening: bioethics, management of conditions, medical genetics, and laboratory technical skills, and examine opportunities to develop research training programs relevant to newborn screening in the region;
• Provide opportunities to share informational resources for practitioners, laboratorians, and families;
• Discuss opportunities to participate in existing international technical support and collaborative research activities;
• Consider the fundamental technologies – existing or to be developed - that are necessary for the expansion of newborn screening activities within the region; and
• Identify strategies to coordinate an epidemiological assessment of the incidence/prevalence of conditions within the region.

Expected outcomes are:

• Establishment of a web-based virtual network to foster communication between newborn screening programs in the region, Europe, and North America;
• Recommendations for collaborative research and research training programs that will strengthen activities related to newborn screening in the region and build on research that is ongoing in the region;
• Identification of technologies that can be transferred to increase newborn screening capacity within the region;
• Determine feasibility of establishing a regional registry

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