Purpose

This collaborative project of the Cincinnati Comprehensive Sickle Cell Center (CCSCC) and the Sickle Cell Awareness Group (SCAG) aims to improve follow-up of newborn screening for sickle cell trait, to enhance community and national awareness of sickle cell issues, and to develop a community-based support system for families affected by sickle cell disease.

Challenges

Despite the CCSCC’s thirty-year experience in newborn screening, and a follow-up rate for disease cases (12-16 per year in our region) of almost 100%, follow-up for sickle trait is only 30% of the 500-600 infants per year in our region with trait receiving confirmatory testing under the current system. We believe concerted effort by a network of primary health care providers, social service, educational and corporate systems, as well as the community at large can increase the rate of trait-follow-up and reduce the time to confirmatory. We will also address the challenge of providing a community-based support system for families affected by sickle cell disease by building a volunteer-assisted Family Support Group within SCAG and utilizing the client services and resources of its affiliate, the Urban League of Greater Cincinnati. On a national level, coordination and sharing of resources for prenatal diagnosis, counseling and education and newborn screening follow-up is needed to create a seamless system of genetic, medical and psychosocial services for those affected by or at risk for sickle cell disease.

Goals and Objectives

Specific Goals for this project are to:

1. Develop a comprehensive, community-based support system within the Sickle Cell Awareness Group of Greater Cincinnati, Inc. for affected individuals and families, and increase community awareness of sickle cell trait and its implications.
2. Improve follow-up for infants identified with sickle trait through enhance professional and patient education at the obstetrical level.
3. Collaborate with the National Coordinating Center (Project 1) to develop certification standards for hemoglobinopathy counseling, to provide data management tools for newborn screening follow-up to local and regional community-based programs, and to offer prenatal diagnostic services and educational material.

Methodology

SCAG will develop a community-based family support group by recruiting affected families through the CCSCC, involving community volunteers and organizations in support group activities, and educating the general public about sickle cell issues, including the need for follow-up of newborn diagnosis of trait. The CCSCC will conduct a program of education, counseling and publicity targeting obstetricians and prenatal clients, to increase utilization of prenatal maternal screening and fetal diagnostic services and to improve the rate of trait follow-up for newborns. The CCSCC will contribute its three decades of expertise and materials on prenatal diagnosis, counselor training and data management for newborn screening collaborate to the national effort embodied in Project 1 to standardize and expand these efforts.

Evaluation

The evaluation plan includes an ongoing assessment of project effectiveness in meeting the goals, objectives, outcomes and performance indicators outlined in Quantitative and Qualitative Work Matrix (Attachment I). Attendance and utilization data, and client satisfaction surveys will assess the effectiveness of the project in meeting client needs. Using the CCSCC Newborn Screening Database, the rate of trait follow-up (confirmatory testing) and time required for follow-up will be tracked and analyzed for a four year period bracketing the project interventions. A project valuator will work with the principle investigator, the staff and an advisory committee to develop a data gathering and analysis process and will provide information to all collaborating parties to allow project personnel to make program changes as appropriate and to evaluate the overall effectiveness of the interventions.

Experience to Date

The CCSCC and SCAG have a thirty-year history of collaboration and service to the sickle cell community. This collaboration has included community hemoglobinopathy screening, joint educational and social events, an annual camp for sickle cell patients and siblings, and mutual staff participation in other community events. As a partner in the Cincinnati Sickle Cell Center Grant from NIH, SCAG participates in the CCSCC Transition Project. The CCSCC, under the leadership of Dr. Marilyn Gaston, pioneered newborn hemoglobin screening in the 1970s. As one of ten NIH-funded centers and as the agent of the ODH for Region I newborn screening follow-up, has extensive expertise and educational materials for newborn follow-up, prenatal diagnosis and counselor training.

Text of Annotation

This collaborative effort by an established treatment-center (CCSCC) and a community-based organization (SCAG) addresses the dual problems of inadequate follow-up for sickle cell trait and the lack of community-based support services for affected families. We aim to improve follow-up by an educational effort targeted to obstetricians and prenatal clients, as well as the community at large. SCAG will develop a support group for families, with referral of families from CCSCC, recruitment of volunteers from the community, and support by community organizations. We will contribute to the national effort to improve sickle cell services by contributing the expertise and materials in prenatal diagnosis, sickle cell counseling, and newborn screening data management developed by the CCSCC and SCAG in three decades of service to the sickle cell community.

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