Problem

Sickle Cell Disease (SCD), a genetically inherited disorder, is detectable at birth via newborn screening. The community, including health care professionals and the general public, need to increase their awareness of SCD and sickle cell trait (SCT). Potential parents who have SCT need genetic counseling to help them with family planning. Newborn screening is essential to ensure that families with a child with SCD are supported and the child has a medical home. Screening and follow-up only can occur if there is effective collaboration between established organizations such as sickle cell treatment centers, and the State and City Departments of Public Health, as well as community agencies and membership organizations. The Sickle Cell Disease Association of Illinois (SCDAI) proposes its Newborn Screening Project (NBSP) to address these community needs. The project's goals are in line with the MCR program priorities, including 1) Promoting an Environment that Supports Maternal and Child Health, 2) Eliminating Health Barriers and Disparities, 3) Improving the Health Infrastructure and Systems of Care and 4) Assuring Quality of Care.

Goals and Objectives

There are four goals to SCDAI's proposed project: 1) to provide education and training to health professionals and community organizations, 2) to provide education to increase awareness of SCD and SCT to the community at large, 3) to monitor and track referrals received of newborns that test positive for sickle cell disease and other abnormal hemoglobinopathies, 4) to provide counseling, education and referrals that include family genetic screening and other support services for the families and guardians of infants and children found with sickle cell disease or trait.

Methodology

With 28 months of experience in implementing a Newborn Screening Project, SCDAI has proposed to accomplish its goals with the following innovative activities including providing continuing education outreach to Primary Care Providers, hosting Sickle Cell Disease conferences for health care professionals, visiting and distributing education materials to churches, day care centers, schools, and community based social service agencies, receiving referrals of newborns with SCD, assisting these identified families in establishing a medical home, counseling and educating identified parents of newborns with SCD and providing genetic screening and counseling for potential parents.

Coordination

The foundation of this comprehensive project consists of the Sickle Cell Disease Association of Illinois which has a dedicated Board of Directors and qualified staff. For the proposed project, SCDAI will collaborate with 11 partners, including the IL. Dept of Public Health and 3 sickle cell treatment centers.

Evaluation

SCDAI will incorporate both quantitative and qualitative evaluation methods in a comprehensive, ongoing evaluation process that documents project activities, monitors progress, determines outcomes and provides feedback for ongoing program planning. The quality assurance plan ensures the proper flow of work, intervention and care standards, customer service, quality of services, with respect to care, access, education and counseling.

Key Words

African Americans, Children with Special Health Needs, Counseling, Family Centered Health Education, Family Support Services, Genetic Disorders, Newborn Screening, Sickle Cell Disease

Annotation

The Sickle Cell Disease Association of Illinois (SCDAI) proposes its Newborn Screening Project to educate the community and healthcare providers about sickle cell disease (SCD), receive referrals of newborns with SCD in order to support them and their families to receive medical care and other services and provide counseling to potential parents who have sickle cell trait. The project will succeed because of its comprehensive collaboration strategy with 11 organizations, including the Illinois Department of Public Health and sickle cell treatment centers. An ongoing evaluation of the project will include both quantitative and qualitative methods.

^ TOP ^
Back to Project Grantees.

Copyright © 2003, Sickle Cell Disease Association of America