Conference report: Second conference of the Middle East and North Africa newborn screening initiative: Partnerships for sustainable newborn screening infrastructure and research opportunities

Danuta Krotoski, Sorrel Namaste, Randa Kamal Raouf, Ibrahim El Nekhely, Michele Hindi-Alexander, Gilian Engelson, James W. Hanson, R. Howell

Research output: Contribution to journalArticle

13 Citations (Scopus)

Abstract

The second conference of the Middle East and North Africa newborn screening initiative: partnerships for sustainable newborn screening infrastructure and research opportunities was held in Cairo, Arab Republic of Egypt on April 12 to 14, 2008. Policy makers, health ministry representatives, health care providers, and experts from the region, Europe, Asia, and North America participated. The primary outcome was development of country plans of action to implement or expand newborn screening programs. Country representatives were grouped by current levels of national newborn screening activities based on a Needs Assessment Survey for national newborn screening programs and assisted by international technical experts. The Needs Assessment Survey provided information on the level of newborn screening in each country, strengths and barriers to implementation of newborn screening programs, and identified areas for research. Newborn screening programs require an integrated system of laboratories, health care providers, and educators, thus, the infrastructure put in place to screen for one condition should support expansion to other conditions. Congenital hypothyroidism was selected for initiating newborn screening programs because of its high prevalence, availability of screening methods, and cost-effective intervention. To this end, the conference provided technical sessions on screening and treatment of congenital hypothyroidism, performance standards, quality assurance, follow-up interventions, and patient management. In addition, presentations highlighted the value of integrating research into newborn screening programs as they are established and in evaluating outcomes. Research opportunities were identified at a postconference workshop sponsored by the US Civilian Research Development Foundation.

Original languageEnglish
Pages (from-to)663-668
Number of pages6
JournalGenetics in Medicine
Volume11
Issue number9
DOIs
StatePublished - Sep 1 2009
Externally publishedYes

Fingerprint

Northern Africa
Eastern Africa
Middle East
Newborn Infant
Research
Congenital Hypothyroidism
Needs Assessment
Health Personnel
Health Educators
Egypt
North America
Administrative Personnel
Education
Costs and Cost Analysis

Keywords

  • Genetic disorders
  • Middle East and North Africa
  • Newborn screening

ASJC Scopus subject areas

  • Genetics(clinical)

Cite this

Conference report : Second conference of the Middle East and North Africa newborn screening initiative: Partnerships for sustainable newborn screening infrastructure and research opportunities. / Krotoski, Danuta; Namaste, Sorrel; Raouf, Randa Kamal; El Nekhely, Ibrahim; Hindi-Alexander, Michele; Engelson, Gilian; Hanson, James W.; Howell, R.

In: Genetics in Medicine, Vol. 11, No. 9, 01.09.2009, p. 663-668.

Research output: Contribution to journalArticle

Krotoski, Danuta ; Namaste, Sorrel ; Raouf, Randa Kamal ; El Nekhely, Ibrahim ; Hindi-Alexander, Michele ; Engelson, Gilian ; Hanson, James W. ; Howell, R. / Conference report : Second conference of the Middle East and North Africa newborn screening initiative: Partnerships for sustainable newborn screening infrastructure and research opportunities. In: Genetics in Medicine. 2009 ; Vol. 11, No. 9. pp. 663-668.
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