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Strengthening Newborn Screening in the Middle East and 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

8:30–9:30Welcoming Remarks and Introductions
Mohamed Cheikh Biadillah, Minister of Health, Morocco
Duane Alexander Director, NICHD/NIH/DHHS, USA
Christian Brechot, Executive Director, INSERM, France
9:30–10:10Issues Unique to the Region
  9:30–9:50Genetic Disorders in Arabs
Ghazi Omar Tadmouri, Centre for Arab Genomic Studies, UAE
  9:50–10:10Consanguineous Marriages and Pubic Health in Morocco (PDF 143 kb)
Naima Lamdouar Bouazzaoui, CHU Ibn Sina–Rabat, Morocco
10:10–10:40Break
10:40–11:10Issues Unique to the Region (Continued)
  10:40–10:55Ethical and Cultural Issues Relating to Genetic Research and Newborn Screening (PDF 184 kb)
Iqtidar Khan and Zulfiqar A. Bhutta, Department of Paediatrics, Aga Khan University, Karachi, Pakistan
  10:55–11:10Newborn Screening and Genomics Research in the Muslim World
Aida Al-Aqeel, Department of Paediatrics, Riyadh Armed Forces Hospital/KFSH&RC, Riyadh, Saudi Arabia
11:10–12:10Pillars of a Newborn Screening System: From Theory to Practice
  11:10–11:30The Newborn Screening System: A Theoretical Framework (PDF 199 kb)
Michele Lloyd-Puryear, HRSA/DHHS, USA
  11:30–11:50A Newborn Screening System in Practice
Jean-Pierre Farriaux, past-President AFPDHE, France
  11:50–12:10Initiating Newborn Screening in a Developing Countries: Challenges and Opportunities (PDF 37 kb)
Carmencita Padilla, NIH Philippines, Philippines
12:10–13:30Lunch
Afternoon Moderator:
Bradford Therrell, National Newborn Screening and Genetics Resource Center, USA
13:30–16:00Newborn Screening in the Region: Country Reports
  13:30–13:35Introduction (PDF 435 kb)
Bradford Therrell, National Newborn Screening and Genetics Resource Center, USA
  13:35–13:45Algeria (PDF 207 kb)
Mohamed Tahar Hamlaoui, Réanimation Pédiatrique, CHU Hussein-Dey, Algiers
  13:45–13:55Bahrain (PDF 15 kb)
Shaikha al Arrayed, Genetic Department, Salmaniya Medical Complex
  13:55–14:05Egypt
Randa Kamal Raouf, Institute of Post-graduate Childhood Studies, Ain-Shams University
  14:05–14:15Iran (PDF 192 kb)
Shahin Yarahmadi, Ministry of Health and Medical Education
  14:15–14:25Jordan (PDF 89 kb)
Sana' Al Hait, Ministry of Health, Disease Control & Prevention
  14:25–14:35Kuwait (PDF 228 kb)
Omar Sherif, Ministry of Health Center for Medical Genetics
14:35–15:10Questions to session presenters
15:10–15:30Break
15:30–18:20Newborn Screening in the Region - Country Reports (Continued)
  15:30–15:40Lebanon (PDF 47 kb)
Khalid Yunis, Department of Pediatrics, American University of Beirut Medical Center
  15:40–15:50Morocco
Naima Lamdouar Bouazzaoui, CHU Ibn Sina – Rabat, Morocco
  15:50–16:00Oman (PDF 64 kb)
Surendra Nath Joshi, Child Health and Inborn Errors of Metabolism, Sultan Qaboos University Hospital
  16:00–16:10Pakistan
Iqtidar Khan, Department of Paediatrics, Aga Khan University, Karachi
  16:10–16:20Palestinian Authority (PDF 213 kb)
Moien Kanaan, Bethlehem University, Bethlehem, Palestinian Authority
  16:20–16:30Qatar
Ghassan Mustafa Abdoh, Neonatal Intensive Care Unit, Hamad Medical Corporation
  16:30–16:40Saudi Arabia (PDF 315 kb)
Mohamed Rashed, National Laboratory for Newborn Screening, King Faisal Specialist Hospital & Research Centre
  16:40–16:50Syria
Adel Bakir, Atomic Energy Commission (AECS)
  16:50–17:00Tunisia (PDF 65 kb)
Habiba Bouhamed Chaabouni, Service de Maladies Congénitales et Héréditaires Hôpital Charles Nicolle, Tunis
  17:00–17:10UAE
Mohamed Salah El-Din, National Screening Program for Woman and Child Health, Central Department of Maternal and Child Health, MOH
  17:10–17:20Yemen
Ahmed Alshehari, Medical College at Thamar University
17:20-18:00Questions to session presenters
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Tuesday, 14 November

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

8:30–9:15Newborn Screening in Europe and the United States
  8:30–8:40Netherlands (PDF 252 kb)
Gerard Loeber, ISNS & Natl. Inst Public Health, Bilthoven
  8:40–8:50France
Paul Czernichow, Department of Endocrinology, Growth and Gynecology Necker Hospital, Paris
  8:50–9:00United States
R. Rodney Howell, NICHD/NIH/DHHS
9:00–9:15Questions to session presenters
9:15–10:30Surveillance, Epidemiology, and Registries
  9:15–9:30The Use of the Danish Newborn Screening Register and Biobank in Routine and Research (PDF 299 kb)
Bent Nørgaard-Pedersen, Serum Staatens Institute – Copenhagen, Denmark
  9:30–9:45Global Lysosomal Storage Disorders Registry Program
Marc Nicolino, Division of Pediatric Endocrinology and Metabolism, University Hôpital Debrousse, Lyon, France
  9:45–10:00National 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
  10:00–10:15The Catalogue for Transmission Genetics in Arabs (CTGA)
Ghazi Omar Tadmouri, Centre for Arab Genomic Studies, Dubai, UAE
10:15–10:30Discussion
10:30–10:50Break
10:50–12:20Range of Newborn Screening Technologies
  10:50–11:10Traditional Testing Techniques: bacterial inhibition, enzyme/fluorescence immunoassay, isoelectric focusing (PDF 265 kb)
Jean-Louis Dhondt, ISNS, AFPDHE, France
  11:10–11:35Tandem Mass Spectrometry: Examining its capabilities; its variations & modifications (PDF 315 kb)
Mohamed Rashed, National Laboratory for Newborn Screening, King Faisal Specialist Hospital & Research Centre, Saudi Arabia
  11:35–11:50Emerging Tests and Technologies in Newborn Screening
Michael Watson, American College of Medical Genetics, USA
11:50–12:20Discussion
12:20–14:00Lunch
Afternoon Moderator:
Mohammed Khattab, Pediatric Oncology, CHU Ibn Sina – Rabat, Morocco
  14:00–15:00Issues around Quality Control and Quality Assurance
  14:00–14:20Assuring Quality in the Newborn Screening System (PDF 519 kb)
Bradford Therrell, NNSGRC, USA
  14:20–14:40Quality Assurance Program for Newborn Screening Laboratories Worldwide
Harry Hannon, CDC/DHHS, USA
14:40–15:00Discussion
15:00–15:30Break
  15:30–16:10Model Programs for Newborn Screening of Prevalent Conditions in the Region
  15:30–15:45Newborn Screening for Congenital Hypothyroidism in Egypt: A Model Program for Developing Countries  (PDF 992 kb)
Ibrahim El-Nekhily, Children With Special Needs Department, Ministry of Health & Population, Egypt
  15:45–16:00Hemoglobinopathies (Sickle Cell Disease and the Thalasemias) (PDF 19 kb)
Shaikha Salim Al-Arrayed, Genetic department, Salmaniya Medical Complex, Kingdom of Bahrain
  16:00–16:10Cost Effectiveness of G6PD newborn screening in Lebanese Males
Issam Khneisser, Newborn Screening Laboratory Medical Genetic Unit, Faculty of Medicine, Saint Joseph University, Lebanon
16:10–17:25Newborn Screening for Other Conditions in the Region
  16:10–16:25Metabolic Conditions: PKU (PDF 125 kb)
Layachi Chabraoui, CHU Ibn Sina –Rabat, Morocco
  16:25–16:40Challenges 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
  16:40–16:55Congenital Adrenal Hyperplasia, a Missed Diagnosis in Egypt (PDF 570 kb)
Nermin Salah El Din, Children Hospital ,Cairo University, Egypt
  16:55–17:10The Genetics of Hearing Loss in the Palestinian Population (PDF 571 kb)
Moien Kanaan, Bethlehem University, Bethlehem, Palestinian Authority
  17:10–17:25Sensory Disorders: Initiating a Hearing Screening Program in Morocco (PDF 35 kb)
Razika Bencheikh, CHU Ibn Sina- Rabat, Morocco
17:25–17:45Discussion
17:45–18:55Education and Outreach to Health Care Providers, Patients & Families
Moderator: James Hanson, NICHD/NIH/DHHS, USA
  17:45–18:00Initiation to Newborn Screening: Our experience of sickle disease (PDF 78 kb)
Mohamed Tahar Hamlaoui, Réanimiation Pédiatrique CHU Hussein-Dey Alegiers, Algeria
  18:00–18:15Education and Outreach to Health Care Providers, Patients & Families: The French Experience
Gérard Bréart, INSERM, France
  18:15–18:30Education Role of Genetic Centres: Moroccan experience
Abdelaziz Sefiani, Department of Medical Genetics, NIH Rabat Morocco
  18:30–18:45A Bilateral Approach to Outreach and Advocacy in Genetics (PDF 313 kb)
Hanaa Rifaey, Genetic Alliance, USA
  18:45–18:55Discussion
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Wednesday, 15 November

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

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8:00–8:30Financing Developing Newborn Screening Systems
  8:00–8:10Financing Developing Newborn Screening Systems: A Saudi Experience
Nasser Al-Hamdan, Ministry of Health, Saudi Arabia
  8:10–8:20Financing Developing Newborn Screening Systems  (PDF 101 kb)
Kenneth Pass, Laboratory of Newborn Screening Technology Wadsworth Center, New York State Department of Health, USA
  8:20–8:30Financing Developing Newborn Screening Systems: A Philippine Experience 
(PDF 92 kb)
Carmencita Padilla, NIH Philippines, Philippines
8:30–9:15Recent Advances Relevant to Newborn Screening of Conditions Prevalent in the Region
  8:30–8:45Muscular Dystrophies in Arab Countries (PDF 828 kb)
Fayçal Hentati, Institut National de Neurologie, Tunisia
  8:45–9:00Recent Advances Relevant to Screening of Congenital Cardiomyopathy in Lebanon
Fadi Bitar, Pediatric Cardiology Program, American University of Beirut Medical Center, Lebanon
9:00 – 9:30Questions to morning session presenters
9:30 - 10:30Panel: 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
10:30-11:00Break
11:00-12:20Opportunities for Research Collaboration and Research Training
  11:00–11:10Fogarty International Center Research and Research Training Programs
Judy Levin, FIC/NIH/DHHS, USA
  11:10–11:20Opportunities for Research Collaboration in Newborn Screening at the National Institute of Child Health and Human Development (PDF 347 kb)
Danuta Krotoski, NICHD/NIH/DHHS, USA
  11:20–11:30Opportunities for Research Collaboration and Research Training in France
(PDF 348 kb)
Arnold Munnich, Necker Hospital, INSERM, France
  11:30–11:40Opportunities for Research Collaboration and Research Training by the European Commission (PDF 103 kb)
Albrecht Jahn, Directorate General for Research, European Commission
  11:40–11:50Research Collaboration and Research Training in Europe (PDF 34 kb)
Jim R. Bonham, ERNDIM/EUGT, United Kingdom
  11:50–12:00Opportunities for Research Collaboration and Research Training (PDF 316 kb)
Kenneth Pass, Laboratory of Newborn Screening Technology
Wadsworth Center, New York State Department of Health, USA
  12:00–12:20Discussion
12:20–13:45Lunch
Afternoon Moderator:
Stéphane Roy, International Relations Department, INSERM, France
13:45–15:15Opportunities for Training in Newborn Screening
  13:45–14:00An International Training and Support Program for Neonatal Screening in Developing Countries (PDF 105 kb)
Masaru Fukushi, Health Science Section, Sapporo City Institute of Public Health, Health & Welfare Bureau, City of Sapporo, Japan
  14:00–14:15Egypt Training Program for Primary Health Care Team on Neonatal Screening 
(PDF 845 kb)
Safa'a Abdel Fattah, Healthy Mother / Healthy Child Project, Ministry of Health & Population, Cairo, Egypt
  14:15–14:30French and European Training Opportunities (PDF 348 kb)
Arnold Munnich, Necker Hospital, INSERM, France
  14:30–14:45Newborn Screening Training in the USA (PDF 520 kb)
Jelili Ojodu, Association of Public Health Laboratories, USA & Bradford Therrell, National Newborn Screening and Genetics Resource Center, USA
  14:45–15:00Genetics Training in the USA
Michael Watson, American College of Medical Genetics, USA
  15:00–15:15Discussion
15:15–15:45Break
15:45–16:45Summary of Meeting, Priorities and Next Steps  (PDF 218 kb)
Brad Therrell and Session Moderators
16:45–17:00Closing Remarks
Rajaa El Aouad, INH, Morocco
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