Newborn screening (NBS) for severe metabolic disorders that hinder an infant’s normal development is well established in many parts of the world. NBS is a first order public health measure because of the large demand for health care information by families with affected children, and the impact on the lives of thousands of persons. Several heritable disorders are known to be of higher prevalence in the Middle East and North Africa than in other countries generally because of the occurrence of consanguinity. Progress for development and implementation of NBS programs in Morocco is challenged due to lack of awareness and financial limitations. The Moroccan Ministry of Health (MoH) is leading the national strategy for NBS that chose to start with pilot programs.
The first pilot NBS program was established in the country to screen for Congenital Hypothyroidism in the region of Rabat. The next step is to set up a central unit dedicated to NBS that will encourage and regulate the NBS program across the country. Coordinating the national effort with the regional and international initiatives is being considered. This workshop is designed to assess Morocco’s NBS initiative, learn from other countries in the region and the world and plan the future. Evaluation of the capacity of the national NBS program and its sustainability will be an outcome through the identification of areas for research infrastructure investment and collaboration.
Newborn screening in Morocco was initiated in 2006. The first concrete pilot program started on the year 2011 and involved the Children’s Hospital of Rabat, the National Institute of Hygiene and the MoH. Two years ago, colleagues from University Hospital of Fez organized the first NBS Morocco workshop to revive the recommendations of the Marrakech 2006 Mena NBS conference and to further enlarge the embryonic program initiated by the MoH in Rabat. The MoH can build momentum with this second meeting to assess further expansion of the program throughout the country. This year, new cities will be invited to take part and contribute to this workshop from Rabat, Casablanca and the Oriental. More are being contacted. There is a plan with the Japanese Cooperation Agency to extend the pilot program to Fes and Casablanca. The MoH has recently nominated the National Commission for NBS and this workshop will be the best opportunity to establish guidelines and work plan for the future.
Learning from others is essential to advance Morocco’s capabilities to serve the nation. Using the framework of a NBS system [screening, diagnosis, treatment/management, education, quality assurance], this meeting will present issues related to establishing a NBS program in Morocco. Scientific, Operational and Technology issues, opportunities and advances related to screening will be presented and then discussed in breakout sessions with experts from around the world. The knowledge shared will help strengthen the NBS programs in Morocco. Topics include common issues and solutions in establishing NBS programs, new and emerging technologies for NBS, candidate conditions prioritization, clinical outcomes and short and long-term follow up for newborns, families and clinicians. Other sessions will discuss global perspectives, financial, social, ethical and legal issues related to NBS research and practice. The aim is to make recommendations to the relevant National Health Committees and other stakeholders based on the understanding gained and the unique needs of Morocco. An increasing number of conditions targeted for screening and the complexity of interpretation contribute to a growing need for integrated information-management strategies. One session in this workshop will be dedicated to NBS Translational Research and Health Information Technology that seeks to improve the health outcomes of newborns with genetic or congenital disorders through an informatics infrastructure that provides the research community access to robust NBS ressources.
The specific aims of this meeting are:
- To review the status of the NBS pilot program in Morocco and extract the lessons learned.
- To discuss enabling factors leading to successful NBS program implementation, and obstacles.
- To generate more awareness regarding utility and feasibility of NBS among Health Care Professionals (HCPs).
- To learn from the NBS experiences of developing and developed countries.
- To develop a road map to sustainably grow the NBS program in Morocco in a phased manner.
- To identify new initiatives and initiate new regional and international partnerships.
- To address international NBS policy issues important for global health.
This workshop is designed for individuals based in medical, biomedical and biological institutions, interested to learn, improve or update their knowledge about newborn screening, medical genetics and medical informatics tools and resources applied to NBS programs. The target audience includes leaders, scientists and technicians from the variety of fields that can impact the quality of life for Moroccans newly born and those caring for them including MDs, Geneticists, Biologists, Pharmacists, Care practitioners, bioinformaticians and computer scientists. All sectors must be empowered to participate in the growth, quality and implementation of the NBS program for Morocco.