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2nd Conference of the Middle East and North Africa Newborn Screening Initiative: Partnerships for Sustainable Newborn Screening Infrastructure and Research Opportunities

April 12-14, 2008

Agenda

Saturday, 12 April
Sunday, 13 April
Monday, 14 April

Saturday, 12 April

9:00-9:45 Welcoming Remarks and Introductions
                                    Nasr Al Sayed, Egypt

James Hanson, USA

Christine Chirol, France

9:45-10:15

Plenary Speaker
                     The Importance of National Newborn Screening Programs
                                    Mohamed Rashed, Egypt

10:15-10:40 Break
10:40-12:10 Basic Aspects of Newborn Screening

Session Chairs: James Hanson, USA

                          Nadia Badrawi, Egypt

                          Esmat Mansour, Egypt

  10:40-10:55 Overview of Newborn Screening System and Infrastructure

Bradford Therrell, USA

  10:55-11:10 Legislative and Policies Relevant to National Newborn Screening

Carmencita Padilla, Philippines

  11:10-11:25 Integrating Research and Research Linkages

R. Rodney Howell, USA

  11:25-11:40 Ethical, Legal, and Cultural Considerations

Gerard Loeber, Netherlands

  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)
  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  

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:
  1. Needs assessment
  2. Prioritize issues
  3. Identify goals and objectives
  4. Create implementation strategies
  5. 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  

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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