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 |
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| 9:45-10:15 |
Plenary Speaker |
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| 10:15-10:40 |
Break |
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| 10:40-12:10 |
Basic Aspects of Newborn Screening |
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| 10:40-10:55 |
Overview of Newborn Screening System and Infrastructure |
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| 10:55-11:10 |
Legislative and Policies Relevant to National Newborn Screening |
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| 11:10-11:25 |
Integrating Research and Research Linkages |
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| 11:25-11:40 |
Ethical, Legal, and Cultural Considerations |
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| 11:40-12:10 |
Discussion |
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| 12:10-13:30 |
Newborn Screening in the Middle East and North Africa |
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| 12:10-12:30 |
Overview of Newborn Screening Systems within the Middle East/North Africa (MENA): Analysis of Country Situation Survey Instrument |
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| 12:30-13:00 |
Discussion |
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| 13:00-13:15 |
Developing Web-Based Training Programs in the MENA Region: A Pilot Congenital Hypothyroidism Training Program |
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| 13:15-13:30 |
Discussion |
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| 13:30-14:50 |
Lunch |
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| 14:50-17:45 |
Discovering Practical Solutions to Implement Newborn Screening |
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| 14:50-15:00 |
Introduction |
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| 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 |
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| 16:15-16:25 |
Presentation by Countries that Have Not Begun Newborn Screening Programs |
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| 16:25-16:45 |
Feedback |
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| 16:45-16:55 |
Presentation by Countries that Provide Limited Newborn Screening Programs |
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| 16:55-17:15 |
Feedback |
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| 17:15-17:25 |
Presentation by Countries that Have Established National Newborn Screening Programs |
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| 17:25-17:45 |
Feedback |
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TOP
Sunday, 13 April
Tentative
| 8:30-12:00 |
Workshop on Developing a National Plan of Action |
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| 8:30-8:40 |
Introduction |
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| 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 |
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| 10:30-11:00 |
Break |
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| 11:00-12:00 |
Continue Discussions in Small Groups |
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| 12:00-12:30 |
Closing Remarks by Policy Makers |
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| 12:30-13:30 |
Poster sessions |
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| 13:30-14:45 |
Lunch |
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| 14:45-16:10 |
Panel on Building Partnerships and Collaboration |
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| 14:45-14:50 |
Introduction |
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| 14:50-15:00 |
Patient and Advocacy Hearing Disorder Groups as a Catalysts for Policy Direction and Implementation |
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| 15:00-15:10 |
Hemoglobinopathy Disorders Research Network (National Institutes of Health) |
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| 15:10-15:20 |
European Union (EU) Pediatricians Society Partnership with Egypt on Tandem Mass Spectrometry (MS/MS) |
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| 15:20-15:30 |
Qatar and Germany Laboratory Partnership |
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| 15:30-15:40 |
Newborn Screening Community Awareness Campaign: The Philippine Experience |
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| 15:40-16:10 |
Discussion |
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| 16:10-16:30 |
Break |
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| 16:30-18:00 |
Panel on Congenital Hypothyroidism |
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| 16:30-16:35 |
Introduction |
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| 16:35-16:55 |
Treatment for Congenital Hypothyroidism |
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| 16:55-17:05 |
Congenital Hypothyroidism Outreach Program for Physicians in Saudi Arabia |
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| 17:05-17:15 |
Congenital Hypothyroidism Screening to Assess Iodine Deficiency in Turkey |
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| 17:15-17:25 |
Iodine Deficiency in Egypt |
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| 17:25-18:00 |
Discussion |
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TOP
Monday, 14 April
Tentative
| 8:45-10:10 |
A Training Panel on Performance Standards and Quality Assurance |
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| 8:45-8:50 |
Introduction |
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| 8:50-9:10 |
System Indicators and Program Evaluation/Audit |
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| 9:10-9:20 |
Developing System Quality Indicators and initiating Laboratory Certification in a Developing Program |
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| 9:20-9:30 |
Iran Activities with Performance Evaluation and Assessment Scheme (PEAS) |
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| 9:30-9:40 |
Developing Laboratory Quality Assurance with Emphasis on Congenital Hypothyroidism International Screening Laboratory Proficiency Testing |
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| 9:40-10:10 |
Discussion |
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| 10:10-10:40 |
Break |
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| 10:40-12:30 |
Discussion Panel on Developing Research Infrastructure: From Bench-to-Bedside |
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| 10:40-10:45 |
Introduction |
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| 10:45-10:55 |
Use of Residual Dried Blood Spots for Research: Practical and Ethical Considerations |
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| 10:55-11:05 |
International Clearing House for Birth Defects |
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| 11:05-11:15 |
Developing a National Collaborative Translational Research Infrastructure |
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| 11:15-11:25 |
New technologies (MS/MS, Luminex, Microfluidics - ‘lab on a chip’) |
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| 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 |
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| 11:35-12:30 |
Discussion |
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| 12:30-13:30 |
Closing Remarks |
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