SCD NEWBORN SCREENING
Following requests from states, we have conducted infrastructure and capacity assessments and consultation in 6 states in Nigeria (Kaduna, Katsina, Oyo, Anambra, Akwam Ibo and Osun States).
Three states (Kaduna, Oyo and Anambra) received Iso electric focusing machines donated by PerkinElmer and were installed by and with education and training by GLoSCA.
These states have also received hemoglobinopathy education and counseling 3day course modeled after the Cincinnati and Connecticut counseling programs. Sample collection have begun and follow up clinics have been started.
Newborn Screening Infrastructure Assessment
- Infrastructure assessment for newborn screening activities include but are not limited to resources for testing, tracking, counseling and treatment follow up, as well as program evaluation. Such assessments are conducted after receiving a formal request from stakeholders interested in establishing a newborn screening program.
- The Nigerian Newborn Screening Initiative (NNSI) team has conducted newborn screening infrastructure assessment in Anambra, AkwamIbom, Kaduna, Oyo, Osun and Kastina States.
Newborn Screening Program
- The Nigerian Newborn Screening Initiative (NNSI) team works with international and local partners to implement the newborn screening program. Community engagement is paramount to the successful implementation of our programs. The NNSI utilizes the Community Based Participatory Program (CBPP) principles. The CBPP is similar to that of Community Based Participatory Research (CBPR) that supports inclusion of the community as an integral member in a program development or planning, implementation and evaluation.
- The NNSI team and other stakeholders engage and develop program activities based on the result of the newborn screening infrastructure assessment and the available resources.
- Anambra, Oyo, Osun and Kaduna States have taken initial steps towards implementation of a pilot newborn screening program.
- The NNSI team has installed an Iso Electric Focusing equipment in Anambra, Oyo and Kaduna States. Also trained staff on usage with ongoing consultations.
- The team conducted staff training, hemoglobinopathy counseling and education trainings for stakeholders in Anambra, Oyo and Osun States
- Nursing staff at the birthing centers attended training in blood spot collection
Education and Training
- The NNSI team provides consultation, seminars and lectures based on needs. These may include training on the use of different newborn screening testing equipment; update and consultation on sickle cell management and related complications; update on nursing care management and evidence based practice; quality improvement, other research implementations and program evaluation.
- Community: The team and its stakeholders provide community education in the form of awareness and training on programmatic issues to enhance their active participation. Additional opportunities are for health promotion and wellness education during medical mission programs. Community members engage in outreach, education and advocacy.
- Professional: The NNSI team includes professionals from all aspects of newborn screening program such as laboratory scientist, nurses, pediatric hematologist, program manager and advocacy organizations that are available to install testing equipment, provide consultation and trainings.
- Students: The initiative provides students at all levels with learning opportunities. This may be in the form of exposure to the laboratory, medical, nursing, clinical and advocacy professions or integration into a chosen profession through internships.
- Hemoglobinopathy Counseling & Education: The initiative provides a 3-5 day hemoglobinopathy counseling and education program for the provision of outreach, trait counseling and disease education. The programs are designed for both lay people and the professionals. Participants are classified as hemoglobinopathy counselor; hemoglobinopathy educator or peer educator based on their interests and qualifications. The training facilitates the provision of accurate information on hemoglobinopathies within the cultural context of the community.
- The program has trained more than 40 hemoglobinopathy counselors and educators from Oyo and Osun States.