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Strengthening Newborn Screening in the Middle East & North Africa

November 13-15, 2006

Agenda

Monday, 13 November
Tuesday, 14 November
Wednesday, 15 November

Electronic versions of the speaker presentations are available upon request. Please note that, to conserve space, abbreviations and acronyms are not spelled out in the agenda below. You can visit the abbreviations and acronyms page for a full listing.

Monday, 13 November

Morning Moderator:
Abdelaziz Sefiani, Morocco

8:30–9:30 Welcoming Remarks and Introductions
Mohamed Cheikh Biadillah, Minister of Health, Morocco
Duane Alexander Director, NICHD/NIH/DHHS, USA
Christian Brechot, Executive Director, INSERM, France
9:30–10:10 Issues Unique to the Region
  9:30–9:50 Genetic Disorders in Arabs
Ghazi Omar Tadmouri, Centre for Arab Genomic Studies, UAE
  9:50–10:10 Consanguineous Marriages and Pubic Health in Morocco (PDF - 142.61 KB)
Naima Lamdouar Bouazzaoui, CHU Ibn Sina–Rabat, Morocco
10:10–10:40 Break
10:40–11:10 Issues Unique to the Region (Continued)
  10:40–10:55 Ethical and Cultural Issues Relating to Genetic Research and Newborn Screening (PDF - 183.65 KB)
Iqtidar Khan and Zulfiqar A. Bhutta, Department of Paediatrics, Aga Khan University, Karachi, Pakistan
  10:55–11:10 Newborn Screening and Genomics Research in the Muslim World
Aida Al-Aqeel, Department of Paediatrics, Riyadh Armed Forces Hospital/KFSH&RC, Riyadh, Saudi Arabia
11:10–12:10 Pillars of a Newborn Screening System: From Theory to Practice
  11:10–11:30 The Newborn Screening System: A Theoretical Framework (PDF - 198.48 KB)
Michele Lloyd-Puryear, HRSA/DHHS, USA
  11:30–11:50 A Newborn Screening System in Practice
Jean-Pierre Farriaux, past-President AFPDHE, France
  11:50–12:10 Initiating Newborn Screening in a Developing Countries: Challenges and Opportunities (PDF - 36.86 KB)
Carmencita Padilla, NIH Philippines, Philippines
12:10–13:30 Lunch

Afternoon Moderator:
Bradford Therrell, National Newborn Screening and Genetics Resource Center, USA

13:30–16:00 Newborn Screening in the Region: Country Reports
  13:30–13:35 Introduction (PDF - 434.75 KB)
Bradford Therrell, National Newborn Screening and Genetics Resource Center, USA
  13:35–13:45 Algeria (PDF - 206.68 KB)
Mohamed Tahar Hamlaoui, Réanimation Pédiatrique, CHU Hussein-Dey, Algiers
  13:45–13:55 Bahrain (PDF - 14.73 KB)
Shaikha al Arrayed, Genetic Department, Salmaniya Medical Complex
  13:55–14:05 Egypt
Randa Kamal Raouf, Institute of Post-graduate Childhood Studies, Ain-Shams University
  14:05–14:15 Iran (PDF - 191.29 KB)
Shahin Yarahmadi, Ministry of Health and Medical Education
  14:15–14:25 Jordan (PDF - 88.39 KB)
Sana' Al Hait, Ministry of Health, Disease Control & Prevention
  14:25–14:35 Kuwait (PDF - 227.32 KB)
Omar Sherif, Ministry of Health Center for Medical Genetics
14:35–15:10 Questions to session presenters
15:10–15:30 Break
15:30–18:20 Newborn Screening in the Region - Country Reports (Continued)
  15:30–15:40 Lebanon (PDF - 46.26 KB)
Khalid Yunis, Department of Pediatrics, American University of Beirut Medical Center
  15:40–15:50 Morocco
Naima Lamdouar Bouazzaoui, CHU Ibn Sina – Rabat, Morocco
  15:50–16:00 Oman (PDF - 63.78 KB)
Surendra Nath Joshi, Child Health and Inborn Errors of Metabolism, Sultan Qaboos University Hospital
  16:00–16:10 Pakistan
Iqtidar Khan, Department of Paediatrics, Aga Khan University, Karachi
  16:10–16:20 Palestinian Authority (PDF - 212.74 KB)
Moien Kanaan, Bethlehem University, Bethlehem, Palestinian Authority
  16:20–16:30 Qatar
Ghassan Mustafa Abdoh, Neonatal Intensive Care Unit, Hamad Medical Corporation
  16:30–16:40 Saudi Arabia (PDF - 343.98 KB)
Mohamed Rashed, National Laboratory for Newborn Screening, King Faisal Specialist Hospital & Research Centre
  16:40–16:50 Syria
Adel Bakir, Atomic Energy Commission (AECS)
  16:50–17:00 Tunisia (PDF - 64.92 KB)
Habiba Bouhamed Chaabouni, Service de Maladies Congénitales et Héréditaires Hôpital Charles Nicolle, Tunis
  17:00–17:10 UAE
Mohamed Salah El-Din, National Screening Program for Woman and Child Health, Central Department of Maternal and Child Health, MOH
  17:10–17:20 Yemen
Ahmed Alshehari, Medical College at Thamar University
17:20-18:00 Questions to session presenters

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Tuesday, 14 November

Morning Moderator:
Peter van Dyck, HRSA, DHHS, USA

8:30–9:15 Newborn Screening in Europe and the United States
  8:30–8:40 Netherlands (PDF - 251.50 KB)
Gerard Loeber, ISNS & Natl. Inst Public Health, Bilthoven
  8:40–8:50 France
Paul Czernichow, Department of Endocrinology, Growth and Gynecology Necker Hospital, Paris
  8:50–9:00 United States
R. Rodney Howell, NICHD/NIH/DHHS
9:00–9:15 Questions to session presenters
9:15–10:30 Surveillance, Epidemiology, and Registries
  9:15–9:30 The Use of the Danish Newborn Screening Register and Biobank in Routine and Research (PDF - 298.07 KB)
Bent Nørgaard-Pedersen, Serum Staatens Institute – Copenhagen, Denmark
  9:30–9:45 Global Lysosomal Storage Disorders Registry Program
Marc Nicolino, Division of Pediatric Endocrinology and Metabolism, University Hôpital Debrousse, Lyon, France
  9:45–10:00 National Congenital Abnormalities Registry in UAE (1999-2004)
Mohamed Salah El-Din, National Screening Program for Woman and Child Health, Central Department of Maternal and Child Health, MOH, UAE
  10:00–10:15 The Catalogue for Transmission Genetics in Arabs (CTGA)
Ghazi Omar Tadmouri, Centre for Arab Genomic Studies, Dubai, UAE
10:15–10:30 Discussion
10:30–10:50 Break
10:50–12:20 Range of Newborn Screening Technologies
  10:50–11:10 Traditional Testing Techniques: bacterial inhibition, enzyme/fluorescence immunoassay, isoelectric focusing (PDF - 258.66 KB)
Jean-Louis Dhondt, ISNS, AFPDHE, France
  11:10–11:35 Tandem Mass Spectrometry: Examining its capabilities; its variations & modifications (PDF - 343.98 KB)
Mohamed Rashed, National Laboratory for Newborn Screening, King Faisal Specialist Hospital & Research Centre, Saudi Arabia
  11:35–11:50 Emerging Tests and Technologies in Newborn Screening
Michael Watson, American College of Medical Genetics, USA
11:50–12:20 Discussion
12:20–14:00 Lunch

Afternoon Moderator:
Mohammed Khattab, Pediatric Oncology, CHU Ibn Sina – Rabat, Morocco

  14:00–15:00 Issues around Quality Control and Quality Assurance
  14:00–14:20 Assuring Quality in the Newborn Screening System (PDF - 518.30 KB)
Bradford Therrell, NNSGRC, USA
  14:20–14:40 Quality Assurance Program for Newborn Screening Laboratories Worldwide
Harry Hannon, CDC/DHHS, USA
14:40–15:00 Discussion
15:00–15:30 Break
  15:30–16:10 Model Programs for Newborn Screening of Prevalent Conditions in the Region
  15:30–15:45 Newborn Screening for Congenital Hypothyroidism in Egypt: A Model Program for Developing Countries  (PDF - 991.90 KB)
Ibrahim El-Nekhily, Children With Special Needs Department, Ministry of Health & Population, Egypt
  15:45–16:00 Hemoglobinopathies (Sickle Cell Disease and the Thalasemias) (PDF -  18.62 KB)
Shaikha Salim Al-Arrayed, Genetic department, Salmaniya Medical Complex, Kingdom of Bahrain
  16:00–16:10 Cost Effectiveness of G6PD newborn screening in Lebanese Males
Issam Khneisser, Newborn Screening Laboratory Medical Genetic Unit, Faculty of Medicine, Saint Joseph University, Lebanon
16:10–17:25 Newborn Screening for Other Conditions in the Region
  16:10–16:25 Metabolic Conditions: PKU (PDF - 124.60 KB)
Layachi Chabraoui, CHU Ibn Sina –Rabat, Morocco
  16:25–16:40 Challenges to Treatment of Inherited Metabolic Disorders: The Saudi Experience
Zuhair Al-Hassnan, Dept. of Medical Genetics, King Faisal Specialist Hospital & Research Center, Riyadh, Saudi Arabia
  16:40–16:55 Congenital Adrenal Hyperplasia, a Missed Diagnosis in Egypt (PDF - 569.89 KB)
Nermin Salah El Din, Children Hospital ,Cairo University, Egypt
  16:55–17:10 The Genetics of Hearing Loss in the Palestinian Population (PDF - 571 KB)
Moien Kanaan, Bethlehem University, Bethlehem, Palestinian Authority
  17:10–17:25 Sensory Disorders: Initiating a Hearing Screening Program in Morocco (PDF - 34.83 KB)
Razika Bencheikh, CHU Ibn Sina- Rabat, Morocco
17:25–17:45 Discussion
17:45–18:55 Education and Outreach to Health Care Providers, Patients & Families
Moderator: James Hanson, NICHD/NIH/DHHS, USA
  17:45–18:00 Initiation to Newborn Screening: Our experience of sickle disease (PDF - 77.23 KB)
Mohamed Tahar Hamlaoui, Réanimiation Pédiatrique CHU Hussein-Dey Alegiers, Algeria
  18:00–18:15 Education and Outreach to Health Care Providers, Patients & Families: The French Experience
Gérard Bréart, INSERM, France
  18:15–18:30 Education Role of Genetic Centres: Moroccan experience
Abdelaziz Sefiani, Department of Medical Genetics, NIH Rabat Morocco
  18:30–18:45 A Bilateral Approach to Outreach and Advocacy in Genetics (PDF - 312.92 KB)
Hanaa Rifaey, Genetic Alliance, USA
  18:45–18:55 Discussion

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Wednesday, 15 November

Morning Moderator:
Layachi Chabraoui, CHU Ibn Sina –Rabat, Morocco

8:00–8:30 Financing Developing Newborn Screening Systems
  8:00–8:10 Financing Developing Newborn Screening Systems: A Saudi Experience
Nasser Al-Hamdan, Ministry of Health, Saudi Arabia
  8:10–8:20 Financing Developing Newborn Screening Systems  (PDF - 10.88 KB)
Kenneth Pass, Laboratory of Newborn Screening Technology Wadsworth Center, New York State Department of Health, USA
  8:20–8:30 Financing Developing Newborn Screening Systems: A Philippine Experience (PDF - 91.80 KB)
Carmencita Padilla, NIH Philippines, Philippines
8:30–9:15 Recent Advances Relevant to Newborn Screening of Conditions Prevalent in the Region
  8:30–8:45 Muscular Dystrophies in Arab Countries (PDF - 827.52 KB)
Fayçal Hentati, Institut National de Neurologie, Tunisia
  8:45–9:00 Recent Advances Relevant to Screening of Congenital Cardiomyopathy in Lebanon
Fadi Bitar, Pediatric Cardiology Program, American University of Beirut Medical Center, Lebanon
9:00 – 9:30 Questions to morning session presenters
9:30 - 10:30 Panel: Research and Infrastructure Needs to Strengthen Newborn Screening in the Region
Moderator: Faycal Hentati, Institut National de Neurologie, Tunisia
Hatem el Shanti, Division of Medical Genetics, University of Iowa Hospital & Clinics, USA
Moien Kanaan, Bethlehem University, Bethlehem, Palestinian Authority
Ahmad Teebi, Cornell Medical College, Qatar & University of Toronto, Toronto, Canada
Khalid Yunis, Department of Pediatrics, American University of Medical Center
10:30-11:00 Break
11:00-12:20 Opportunities for Research Collaboration and Research Training
  11:00–11:10 Fogarty International Center Research and Research Training Programs
Judy Levin, FIC/NIH/DHHS, USA
  11:10–11:20 Opportunities for Research Collaboration in Newborn Screening at the National Institute of Child Health and Human Development (PDF - 346.98 KB)
Danuta Krotoski, NICHD/NIH/DHHS, USA
  11:20–11:30 Opportunities for Research Collaboration and Research Training in France (PDF - 348 KB)
Arnold Munnich, Necker Hospital, INSERM, France
  11:30–11:40 Opportunities for Research Collaboration and Research Training by the European Commission (PDF - 102.52 KB)
Albrecht Jahn, Directorate General for Research, European Commission
  11:40–11:50 Research Collaboration and Research Training in Europe (PDF - 33.03 KB)
Jim R. Bonham, ERNDIM/EUGT, United Kingdom
  11:50–12:00 Opportunities for Research Collaboration and Research Training (PDF - 315.84 KB)
Kenneth Pass, Laboratory of Newborn Screening Technology
Wadsworth Center, New York State Department of Health, USA
  12:00–12:20 Discussion
12:20–13:45 Lunch

Afternoon Moderator:
Stéphane Roy, International Relations Department, INSERM, France

13:45–15:15 Opportunities for Training in Newborn Screening
  13:45–14:00 An International Training and Support Program for Neonatal Screening in Developing Countries (PDF - 104.72 KB)
Masaru Fukushi, Health Science Section, Sapporo City Institute of Public Health, Health & Welfare Bureau, City of Sapporo, Japan
  14:00–14:15 Egypt Training Program for Primary Health Care Team on Neonatal Screening (PDF - 844.63 KB)
Safa'a Abdel Fattah, Healthy Mother / Healthy Child Project, Ministry of Health & Population, Cairo, Egypt
  14:15–14:30 French and European Training Opportunities (PDF - 347.45 KB)
Arnold Munnich, Necker Hospital, INSERM, France
  14:30–14:45 Newborn Screening Training in the USA (PDF - 519.22 KB)
Jelili Ojodu, Association of Public Health Laboratories, USA & Bradford Therrell, National Newborn Screening and Genetics Resource Center, USA
  14:45–15:00 Genetics Training in the USA
Michael Watson, American College of Medical Genetics, USA
  15:00–15:15 Discussion
15:15–15:45 Break
15:45–16:45 Summary of Meeting, Priorities and Next Steps  (PDF - 217.68 KB)
Brad Therrell and Session Moderators
16:45–17:00 Closing Remarks
Rajaa El Aouad, INH, Morocco

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