April 12-14, 2008

Background
In 2006, Dr. Elias Zerhouni, NIH Director of the National Institutes of Health (NIH), traveled to North Africa with an NIH delegation to discuss plans for collaboration and partnership. During this visit, newborn screening emerged as one of the top health priorities in the region. In the Middle East and North Africa (MENA), infant mortality rates during the last four decades have dropped from 154 to 44 per 1,000 live births (UNICEF, 2004). This drop is primarily due to the control of infectious diseases. As the MENA region undergoes an epidemiological shift, genetic disease and other congenital disorders are becoming an increasingly important public health issue (Board of Global Health, Institute of Medicine, 2003).

Access to newborn screening in MENA region is under-developed. The majority of neonatal screening is only offered at universities, district hospitals, or private clinics. This situation is particularly problematic because blood relationships are highest in the rural areas where newborn screening services are largely inaccessible. However, many countries are beginning to develop national newborn screening programs and most commonly beginning with screening for congenital hypothyroidism. Other conditions widely screened for are Glucose-6-Phosphate Dehydrogenase (G6PD) deficiency, phenylketonuria (PKU), and hemoglobinopathies.

Due to the growing need for neonatal screening, the Ministry of Health of the Kingdom of Morocco partnered with the NICHD and others to hold a regional conference entitled Strengthening Newborn Screening in the Middle East and North Africa from November 13-15, 2006, in Marrakech, Morocco. The meeting brought together representatives from 18 countries in the region and 11 countries in Europe, North America and Asia/Pacific, and received support from 20 international public-private sponsors.

A primary outcome of the meeting was the Marrakech Declaration, developed by the meeting participants who committed themselves to promoting newborn screening in the region. The document affirms newborn screening as a key public health priority for the region. In response, several countries have begun developing and expanding newborn screening programs. For example, Morocco began a newborn screening pilot program and plans to include it in the national package of health services. The first conditions the country will screen for are congenital hypothyroidism and hearing loss. In Tunisia, a report was sent to the Ministry of Health proposing the implementation of a national newborn screening program.

A second outcome was the establishment of a steering committee to plan for the region’s next meeting on newborn screening and to address recommendations made by the Marrakech Declaration. The committee communicates using teleconferencing and an innovative Web-based conference tool called Adobe® Connect. Included are members from multilateral organizations, ministries of health, universities, and other health care providers, as well as international collaborators in the United States, Europe, and Asia/Pacific. Under the stewardship of the steering committee, a Congenital Hypothyroidism (CH) Training Working Group and a Survey Working Group have been established.

Back to Partnership for Sustainable Newborn Screening Home