Program

June 12, 2019 Pre-workshops 1:00-3:30 PM

1: Screening and management of jaundice

10:00 – 12:00 Amina Barkat, Pediatrician – Neonatologist – Nutritionist; Coordinator of the Commission for Continuing Medical Education at the Faculty of Medicine and Pharmacy of Rabat, University Mohammed V.

2: PerkinElmer Technical Demonstration

12:00 – 1:00 PM Heidi Luoto-Helminen, Global Product Manager at PerkinElmer, Inc. Turku Area, Finland.

This workshop is postpond to July 14th at 4:00PM, before the technology session

3: Building a Newborn Screening Registry

1:00-3:30 PM Careema Yusuf, MPH, Association of Public Health Laboratories (APHL)
Guisou Zarbalian, MS, MPH, APHL
Bradford Therrell, PhD, NNSGRC/National Newborn Screening and Global Resource Center
Michele A Lloyd-Puryear, MD, PhD, ACMG
Participants will create a SCD registry

Day 1 June 12, 2019

Plenary Session 1: Opening Session: Introductions and Welcome

Time Title Speaker (s)
4:00-5:00 PM Registration
Speeches Chairs
5:00-7:00 PM Welcome
Future of Newborn Screening in Africa
Ouldim, K
Ohene-Frempong, K
Lloyd-Puryear, M
Ghazal, H
Barkat, A

Speakers at the Opening Ceremony

5:00—7:00 PM Welcome note Amina Barkat
Karim Ouldim
Coran Recitation
Movie exposition
By the child Abdelouadoud
Talks Dr. Anas Doukkali, Minister of Health
Pr. Saaid Amzazi, Minister of Education and Research
Pr. Hicham Nejmi, General Secretary, MoH
Pr. Mohamed Khalfaoui, Director, CNRST
Dr. Abdelhakim Yahyane, Director, Population Dept, MoH
Dr. Michele Puryear, Scientific Comittee Chair
Dr. Ohene-Frempong, K, Ghana
Dr. Rodney Howell, President of ISNS
Keynote Speech: Artificial Intelligence, Precision Medicine and Newborn Screening   Prof. Peter Tonellato | University of Harvard/University of Missouri

Day 2 June 13, 2019

Time Title Speakers
7:30 – 8:30 Registration/Breakfast
Plenary Session 2: Newborn Screening – Background and Current Activities –  Moderators : Michele Puryear, Hassan Ghazal, Amina Barkat
8:30 – 8:45 Welcome: History of NBS Meetings in Region and Meeting Goal HOWELL, R RODNEY
University of Miami, Department of Pediatrics
8:45 – 9:00 Status of Newborn Screening World-wide THERRELL, B
International Newborn Screening and Genetics Program
9:00 –9:20 Building a Newborn Screening Program in a Middle Income Country PADILLA, C
Chancellor, University of the Philippines
9:20 – 9:40 Newborn Screening In Morocco CHABRAOUI L/ DGHOUGI N.

NBS National Steering Committee, Morocco

9:40 – 9:50 Discussion
9:50 – 10:15 Coffee Break
10:15 – 11:30 African Country Reports
(10 min. max – answering scripted questions provided in slide format)
  • Tanzania: Emmanuela Ambrose
  • Uganda: Charles Kiaga
  • Nigeria: Obiagell Nnodu
  • Benin: Mohammed Chérif Rahimy
  • Dem Rep of Congo: Leon Tshilolo
  • Malawi: Tisungame Mvalo
  • Mali – Etienne Dembele
11:30-12:00 Genomics and Newborn Screening Michael Watson, CEO, American College of Medical Genetics and Genomics
12:00-12:45 Reports from other Regions (Europe and Mena)
  • Spain – Raquel Yahyaoui Macías
  • Portugal -Ana Marcão
  • Norway -Olav Eielsen
  • MENA – Issam Khneisser
12:45 – 14:00 Lunch at Workshop

 

Plenary Session 3:
Newborn Screening – Building Infrastructure – Moderators – Therrell, Padilla, Ouldim, Kharbach, Knouni
Time Title Speaker (s) Comments
14:00 – 14:15 Session Introduction – The SYSTEM

 

Lead – Therrell

Panel Discussion with alternating short presentations –

  • Therrell
  • Padilla
  • Lorey
  • Frempong

 

(One lead on each section with input from second and then discussion by others to round out each subsection.  All experience based.)

Brief overview of 6 components and PEAS as a way of defining needs up front
14:15 – 14:30 Developing and Meeting System-wide Educational Needs  (Therrell, Padilla)

  • Professionals (including preparations at birthing centers)
  • Parents (materials and methods)
  • Policy Makers

 

Lead – Padilla

Discussion of methods and materials drawing on experiences in developed and developing programs
14:30 – 14:45 Developing and Meeting Laboratory Needs (Lorey, Therrell)

  • Possibility of external collaboration – Initial or long-term
  • CLSI Guideline
  • Screening Laboratory – Methods, supplies, etc.
  • Confirmatory Laboratory – availability, tests, etc.

 

Lead – Lorey

Discussion of initial set-up needs with emphasis on collaboration.

Review of needs with emphasis on sickle cell : IEF, HPLC, POC developments

14:45 – 15:00 Developing and Meeting Follow-up Needs ( Ohene-Frempong, Padilla)

  • Reporting
  • Tracking
  • Diagnosis
  • Data Collection

 

Lead – Ohene-Frempong

Review of process and needs setting stage for later discussions on data harmonization, parent involvement, translational research
15:00 – 15:30 Communicating Results:

Harmonizing Newborn Screening and Health Information Technology

Describing the need and process for Developing Standards

Practical Application of Information Technology in Ghana

ZARBALIAN, GUISOU
APHLYUSUF, CAREEMA
APHLASUBONTENG, AUGUSTINE
Ghana
15:30 – 16:00 Coffee Break

 

Time Title Speakers
Special Session / Selected Abstracts – 

Moderators: Peter Tonellato, Allali Imane

16:00-16:25 Big data in Newborn screening Peter Tonellato (University of Missouri/University of Harvard)
16:25-16:45 Experience from Mali : Problems concerning the traditional collecting of data in Newborn screening -A model of North South cooperation in child and maternal health. Olav Eielsen MD: «Norsahel» Norway, Mr Etienne Dembele, Norsahel, Bamako, Mali
16:50-17:00 The implementation of newborn screening on dried blood spots for adenosine deaminase – Severe Combined immunodeficiency using tandem mass spectrometry. Sara EL Janahi
Master thesis,
UM6SS, Casablanca/
National Health Institute, Portugal
17:00-17:10 Hemoglobinopathies in the North of Morocco: Newborn screening Achraf LAGHMICH

Faculty of Sciences and Techniques of Tangier

17:15 – 1800 Discussion and Concluding Remarks
  • THERRELL, B
  • PADILLA, C
  • BARKAT, A
19:30 –  22:00 Dinner on Your Own

Day 3 June 14, 2019

ROOM 1—SICKLE CELL DISEASES / ROOM 2—CONGENITAL HEART DISEASE (9-12:30)

 

Parallel Session 1:
ROOM 1—Newborn Screening – Sickle Cell Diseases – Moderator: Ware, R, Khattab,  Benazzouz, Yahyaoui, Bousfiha
Time Title Speakers
9:00 – 9:20 Hemoglobinopathies 101

  • Brief history of NBS programs in Sub Saharan Africa
  • Nomenclature and disease definitions (Hb SS, Hb SA, Hb SC, other detectable diseases including alpha-thal
Ohene-Frempong
Providing basic background for NBS for hemoglobinopathies
 9:20 – 10:00 Ongoing projects in screening and treatment in Uganda Ware, Russell
Kiyaga, Charles 
10:00 – 10:40 Implementing and sustaining NBS for hemoglobinopathies in Ghana OWUSU, AFIA ASAMOAH

History of overcoming barriers to sustaining NBS for hemoglobinopathies in Ghana/building a follow-up system

10:40 – 11:00 Discussion
11:00 – 11:15 Coffee Break
11:15 – 11:30 Cost effectiveness of newborn screening for sickle cell diseases in Angola Santos, B 
11:30 – 12:15 Global Hemoglobinopathy Initiatives ZILFALIL BIN ALWI
School of Medical Sciences
Universiti Sains Malaysia
Kelantan
Malaysia
Global Globin 2020
ITHANET
12:15 – 12:30 Discussion
12:30 – 14:00 Lunch at Workshop
 ROOM 2—Newborn Screening – Critical Congenital Heart Disease – Moderators: Martin, G., Hom, L. & Saarinen, A; Slitine, N., Dibi A., Atmani S.
Time Title Speakers Comments
9:00 – 9:20 Introduction to CCHD Screening
· Brief history
· Targets and Sensitivity
Gerard Martin, Children’s National Health System Providing basic background on CCHD NBS
9:20 – 9:50 Nuts and Bolts of Implementation

  • Screening demonstration/algorithm
  • Education: For Healthcare staff and Families
Lisa Hom, Children’s National Health System/Annamarie Saarinen, The Newborn Foundation Demo, Screening implementation do’s and don’ts, required education/FAQs
9:50 – 10:10 Interpreting positive and negative screens Gerard Martin, Children’s National Health System Important considerations for follow-up of screens
10:10 – 10:30 Focused Discussion
10:30 – 11:00 Coffee Break
11:00 – 11:20 Introduction to MENA CCHD Screening Updates Annamarie Saarinen, The Newborn Foundation Intro. to global impact/implications
11:20 – 11:40 Infrastructure building capacity around follow-up & care delivery in Africa Jackie Boucher, Children’s HeartLink Building capacity in Africa
11:40 – 12:10 CCHD screening implementation and implications for Africa/Middle East: Experience from Morocco Nadia El Idrissi Slitine, Mohammed VI University Mother & Child Hospital Implementation update from Marrakesh Children’s Hospital
12:10 – 12:30 Discussion Panel
12:30 – 14:00 Lunch
Plenary Session 4: Education Initiatives,   Moderator: LEVY-FISCH, J – ANIE, K – YAHYANE – CHAHID – SEBBAN
14:00-14:30 Communicating with Parents Bonhomme,N
Genetic Alliance
14:30 – 15:00 Communicating with Parents and Health Care Providers Levy-Fisch, J
Save Babies Through Screening Foundation
15:00 – 15:30 Developing genetic counseling services in Africa: Experiences from Ghana Kofi Anie, UK
School of Public Health
Imperial College London
15 :30 – 15 :40 Civil society’s role in building awareness about Newborn screening in Morocco Fenna Builler

 

15:40 – 15:45 Discussion
15:45 – 16:00 Coffee Break
16:00 – 16:30 Hemoglobinopathies detection with Migele TM Gel Electrophoresis Unit Heidi Luoto-Helminen, Global Product Manager at PerkinElmer, Inc
Turku Area, Finland(s)
16:30 – 17:15 IEF Demonstration/Discussion Heidi Luoto-Helminen, Global Product Manager at PerkinElmer, Inc
Turku Area, Finland
17:15 – 18:00 BioRad Demonstration/Discussion BioRad Representative Videos(s)
18:00 – 18:45 Closing Ceremony PURYEAR, GHAZAL, OULDIM
18:45 Rabat Declaration BARKAT A, OHENE-FREMPONG, RODNEY
20:00 Group Dinner