Purpose / Challenges

The overall purpose of this grant proposal is to develop effective and collaborative newborn hemoglobinopathy screening services and programs, which will first be tested and validated locally, and subsequently disseminated nationally for widespread implementation. The rationale for this approach is the recognition that newborn screening services are lacking in many parts of the United States, and our strong belief that effective programs and tools should be made readily available to all local healthcare providers, communities, and medical institutions.

Goals and Objectives

The specific objectives of this proposal are designed to create model programs and tools that are applicable to sickle cell centers across the United States:
1. To develop and validate an effective newborn hemoglobinopathy screening model that achieves >95% compliance rates for babies with sickle cell disease.
2. To create a video tool for sickle cell disease and trait conditions that is language appropriate, culturally competent, and broadcast quality.
3. To develop programs and algorithms for both educational and decision-making counseling services to families of infants with hemoglobinopathy disease or trait.

Methodology / Evaluation

The objectives inclu4e appropriate methods, logic models, time framed work plan, measurable results, and outcome-oriented evaluations. Through close collaboration with the coordinating center, protocols will be shared readily with other sickle cell centers and will serve as a foundation for the development of model standards for national newborn hemoglobinopathy screening, follow-up, and education.

Experience to Date/Text of Annotation:

The St. Jude Comprehensive Sickle Cell Center is a national center of excellence for pediatric sickle cell disease. With a large target population of over 800 affected children, the St. Jude Center has developed long-standing and successful partnerships within the Memphis community, western Tennessee, the surrounding region, and the nation at large. Members of the St. Jude Center are recognized leaders in newborn screening services, and have developed successful programs with a commitment to education and dissemination of information. St. Jude is now poised to expand its organized and collaborative programs for sickle cell disease screening, diagnosis, counseling, education, and medical care, and focus on the development of programs with generalized utility and applicability to centers across the United States.

Key Words

sickle cell disease, newborn screening, education, counseling.

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