April 12-14, 2008
Tentative Agenda
Saturday, 12 April
Sunday, 13 April
Monday, 14 April
Saturday, 12 April
Tentative | 9:00-9:45 | Welcoming Remarks and Introductions |
| 9:45-10:15 | Plenary Speaker |
| 10:15-10:40 | Break |
| 10:40-12:10 | Basic Aspects of Newborn Screening |
| | 10:40-10:55 | Overview of Newborn Screening System and Infrastructure |
| | 10:55-11:10 | Legislative and Policies Relevant to National Newborn Screening |
| | 11:10-11:25 | Integrating Research and Research Linkages |
| | 11:25-11:40 | Ethical, Legal, and Cultural Considerations |
| | 11:40-12:10 | Discussion |
| 12:10-13:30 | Newborn Screening in the Middle East and North Africa |
| | 12:10-12:30 | Overview of Newborn Screening Systems within the Middle East/North Africa (MENA): Analysis of Country Situation Survey Instrument |
| | 12:30-13:00 | Discussion |
| | 13:00-13:15 | Developing Web-Based Training Programs in the MENA Region: A Pilot Congenital Hypothyroidism Training Program |
| | 13:15-13:30 | Discussion |
| 13:30-14:50 | Lunch |
| 14:50-17:45 | Discovering Practical Solutions to Implement Newborn Screening |
| | 14:50-15:00 | Introduction |
| | 15:00-16:00 | Small Group Discussions on the Challenges of and Progress Made in Developing Newborn Screening Programs Grouped by: - Countries that have not begun newborn screening (Group 1)
- Countries that provide limited newborn screening (Group 2)
- Countries that have established national newborn screening (Group 3)
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| | 16:00-16:15 | Break |
| | 16:15-16:25 | Presentation by Countries that Have Not Begun Newborn Screening Programs |
| | 16:25-16:45 | Feedback |
| | 16:45-16:55 | Presentation by Countries that Provide Limited Newborn Screening Programs |
| | 16:55-17:15 | Feedback |
| | 17:15-17:25 | Presentation by Countries that Have Established National Newborn Screening Programs |
| | 17:25-17:45 | Feedback |
| TOP | |
Sunday, 13 April
Tentative | 8:30-12:00 | Workshop on Developing a National Plan of Action |
| | 8:30-8:40 | Introduction |
| | 8:40-10:30 | Small Group Discussions to Develop a Draft National Action Plan Grouped by: - Countries that have not begun newborn screening (Group 1)
- Countries that provide limited newborn screening (Group 2)
- Countries that have established national newborn screening (Group 3)
Action Plan Framework: - Needs assessment
- Prioritize issues
- Identify goals and objectives
- Create implementation strategies
- Develop an action plan and measures for evaluating effectiveness
Workshop Outcome: Draft Outline of National Action Plan to be Developed Further, Subsequent to the Conference, by Web-based Working Groups |
| | 10:30-11:00 | Break |
| | 11:00-12:00 | Continue Discussions in Small Groups |
| 12:00-12:30 | Closing Remarks by Policy Makers |
| 12:30-13:30 | Poster sessions |
| 13:30-14:45 | Lunch |
| 14:45-16:10 | Panel on Building Partnerships and Collaboration |
| | 14:45-14:50 | Introduction |
| | 14:50-15:00 | Patient and Advocacy Hearing Disorder Groups as a Catalysts for Policy Direction and Implementation |
| | 15:00-15:10 | Hemoglobinopathy Disorders Research Network (National Institutes of Health) |
| | 15:10-15:20 | European Union (EU) Pediatricians Society Partnership with Egypt on Tandem Mass Spectrometry (MS/MS) |
| | 15:20-15:30 | Qatar and Germany Laboratory Partnership |
| | 15:30-15:40 | Newborn Screening Community Awareness Campaign: The Philippine Experience |
| | 15:40-16:10 | Discussion |
| 16:10-16:30 | Break |
| 16:30-18:00 | Panel on Congenital Hypothyroidism |
| | 16:30-16:35 | Introduction |
| | 16:35-16:55 | Treatment for Congenital Hypothyroidism |
| | 16:55-17:05 | Congenital Hypothyroidism Outreach Program for Physicians in Saudi Arabia |
| | 17:05-17:15 | Congenital Hypothyroidism Screening to Assess Iodine Deficiency in Turkey |
| | 17:15-17:25 | Iodine Deficiency in Egypt |
| | 17:25-18:00 | Discussion |
| TOP | |
Monday, 14 April
Tentative | 8:45-10:10 | A Training Panel on Performance Standards and Quality Assurance |
| | 8:45-8:50 | Introduction |
| | 8:50-9:10 | System Indicators and Program Evaluation/Audit |
| | 9:10-9:20 | Developing System Quality Indicators and initiating Laboratory Certification in a Developing Program |
| | 9:20-9:30 | Iran Activities with Performance Evaluation and Assessment Scheme (PEAS) |
| | 9:30-9:40 | Developing Laboratory Quality Assurance with Emphasis on Congenital Hypothyroidism International Screening Laboratory Proficiency Testing |
| | 9:40-10:10 | Discussion |
| 10:10-10:40 | Break |
| 10:40-12:30 | Discussion Panel on Developing Research Infrastructure: From Bench-to-Bedside |
| | 10:40-10:45 | Introduction |
| | 10:45-10:55 | Use of Residual Dried Blood Spots for Research: Practical and Ethical Considerations |
| | 10:55-11:05 | International Clearing House for Birth Defects |
| | 11:05-11:15 | Developing a National Collaborative Translational Research Infrastructure |
| | 11:15-11:25 | New technologies (MS/MS, Luminex, Microfluidics - ‘lab on a chip’) |
| | 11:25-11:35 | Laboratory for Research on the Genetics of Developmental Disabilities in Children: Institut National de la Santé et de la Recherche Médicale (French National Institute of Health), Laboratory Unit in Morocco |
| | 11:35-12:30 | Discussion |
| 12:30-13:30 | Closing Remarks |
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