Problem

In Hawaii, there is a disparity between the follow-up clinical and counseling services received by newborns with thalassemias and those with Sickle Cell Disease or Trait (SCD/T). Locally, there is a lack of culturally appropriate SCD/T education materials and no training opportunities for single-gene hemoglobinopathy counselors.

Goals and Objectives

Goal 1: Ensure that newborns and families with SCD/T receive comprehensive clinical and counseling services. Objectives: 1) Develop and implement a standardized clinical and counseling protocol for SCD/T; and 2) Develop and implement a plan for long-term follow-up, support, and tracking of individuals detected by newborn screening;
Goal 2: Promote educational activities about SCD/T. Objectives: 1) Identify or create and distribute culturally appropriate materials for Hawaii's diverse population; and 2) Provide education for health care providers, medical students, public health staff, and consumers.
Goal 3: Offer a single-gene counselor training and certification program for SCDIT. Objectives: 1) Develop and implement a training, education, and certification program targeting health care providers and public health staff to provide SCD/T counseling and services statewide.

Methodology

A triad of clinical services, education materials, and training will be developed and implemented based on an assessment of available services and resources. Project activities will result in the development of self-sustaining SCD/T follow-up services for newborns. All activities incorporate the Maternal and Child Health Bureau's priorities of developing systems of care that eliminate disparities, are culturally competent, and improve quality of care for newborns and their families.

Coordination

The Genetics Program is partnering with the Hawaii Newborn Screening Program, Hawaii Community Genetics, and the West Fresno Health Care Coalition.

Evaluation

Formative process evaluation will assess ongoing activities and help the project staff, steering committee and work groups monitor and improve the project activities. Summative evaluation will assess the success of the project activities using national, regional, and locally developed performance measures.

Annotation

This project will develop Sickle Cell Disease and Trait clinical and counseling services, education materials, and a single gene counselor training and certification program.

Key Words

Sickle Cell Disease, Sickle Cell Trait, Genetics, Genetics Services, Education, Single Gene Counselor, Newborn Screening, Clinical Genetics Services.

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