Purpose

The purpose of this project is to strengthen and enhance the state of Georgia’s newborn screening program, minimizing the possibility of affected infants and their families not receiving the proper care and not fully understanding the medical conditions associated with having an abnormal hemoglobin.

Challenges

Challenges to the project include the negotiation of the receipt of the results of diseased newborns and the normal results; getting parents to come in for counseling sessions; getting physicians to attend sickle cell education sessions; and some aspects of the new HIPPA regulations. However, the Foundation fully expects to overcome all challenges to the success of the program.

Goals and Objectives

Goal # 1: To expand access to sickle expertise outside the urban center areas, to the areas of Bibb County, Chatham County, Dougherty County, and Muscogee County where high concentrations of persons 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 do demographic analyses of the sickle gene throughout the state of Georgia and in various ethnic and racial groups.

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 to families, who test normal, will also be re-instated; insuring that all persons tested for sickle cell disease through the newborn screening program will receive results. Establish and 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 other support to sickle cell support groups.

The project will conduct a demographic analysis of the sickle gene throughout the state of Georgia. In addition, the project will insure pertinent information in Spanish to address the needs of a growing Hispanic population.

Experience to Date

The Foundation has more than 30 years of experience in addressing the needs of the sickle cell population in the state of Georgia. It has been an integral part of the newborn screening program in the state of Georgia, since the program’s inception and the Foundation serves on all the major task forces and committees that deal with sickle cell disease in the state of Georgia. A major strength of the Foundation is its ability to collaborate and form the necessary relationships to accomplish its mission of effectively addressing the needs of the sickle cell population through its various programs and activities.

Text of 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 a demographic analysis of the sickle gene throughout the state.

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