Problem

The purpose of this project is to strengthen the state of Georgia's newborn screening program by addressing the problems associated with education, accessibility, and awareness of sickle cell disease and its complications; with the medical follow-up of certain newborns; with absence of tests to confirm the accuracy of newborn screening results and that measure the effectiveness of counseling.

Goals and Objectives

Goal #1: To expand access to sickle expertise outside the urban center areas, to the areas of Bibb County and Muscogee County where high concentrations of person with sickle cell disease reside;
Goal #2: To implement an effective counseling and education program for the Hispanic population;
Goal #3: To implement an effective program of education and awareness activities and technical assistance throughout the identified areas;
Goal #4: To enhance medical follow-up of newborns identified via newborn screening as having Alpha Thalassemia Trait and Variant Trait (non-sickle hemoglobin variants);
Goal #5: To test the accuracy of the newborn screening results and the effectiveness of counseling provided at the time of initial notification.

Methodology

The project will expand its already existing education and counseling services to selected areas to identify and address problems that exist in those areas for families of individuals identified through the newborn screening program as having sickle cell disease or as being a carrier. The project will also expand these services to the Hispanic population in the state of Georgia. Notification of families, who test normal, will be done insuring that all persons tested for sickle cell disease through the newborn screening program will receive results. The program will offer continuing medical education sessions about sickle cell disease to healthcare personnel in the designated counties. In an effort to increase sickle cell awareness and understanding, the project will provide technical assistance and support to sickle cell support groups. The project will work to enhance medical follow-up to newborns identified as having Alpha Thalassemia Trait and Variant Trait (non-sickle hemoglobin variants) by providing supplemental information to healthcare personnel and conduct comparative studies to confit-m the accuracy of trait results and the effectiveness of initial counseling efforts.

Coordination

The Sickle Cell Foundation of Georgia, Inc. plans to collaborate with those entities that are relevant to the successful implementation of the project's goals and objectives. These agencies and organizations will include the state newborn screening program, with whom the Foundation currently has a contract to provide trait results; the two comprehensive sickle cell programs in the state; the Morehouse School of Medicine; county health departments \\lthin the state; sickle cell support groups; public and private heaIthcare personnel; the Sickle Cell Disease Association of America, Inc; and the National Coordinating and Evaluation Center.

Evaluation

The evaluation plan for this project will include several components to evaluate its effectiveness and success. These components will include pre and post tests; project development; database development; documentation of responses; record keeping.

Key Words

Access to Healthcare; Community Based Health Education; Counseling; Genetic Counseling; Health Education; Hemoglobinopathies; Nutrition; Patient Education; Psychosocial Services; Screening; Sickle Cell Disease; Thalassemias.

Annotation

This project has developed goals and objectives that are designed to enhance the state of Georgia's newborn screening program by addressing issues involving one-on-one counseling, psychosocial intervention, healthcare personnel education, notification of results, specific Hispanic needs, support group activities and confirmation of trait results and effectiveness of counseling efforts.

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