Hawaii Sickle Cell Disease Project

Challenge:  In Hawaii, there is a difference between the follow-up clinical and counseling services received by newborns with thalassemias and those with Sickle Cell Disease or Trait. There is also a lack of culturally appropriate sickle cell disease and trait educational materials and professional education.

Goals and Objectives: Project 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. The project has planned activities around the following goals:

Goal 1:  Ensure that newborns and families with sickle cell disease or trait receive comprehensive clinical and counseling services.


  1. Develop and implement a standardized clinical and counseling protocol for sickle cell disease and trait.
  2. Develop and implement a plan for long-term follow-up, support, and tracking of individuals identified by newborn screening.

Goal 2: Promote educational activities about sickle cell disease or trait.


  1. Identify or create and distribute culturally appropriate materials for Hawaii’s diverse population.
  2. Provide education for health care providers, medical students, public health staff, and consumers.

Goal 3: Offer hemoglobinopathy counseling training sessions for healthcare professionals who work with individuals who have sickle cell disease or trait.


  1. Develop and implement training sessions that target health care providers and public health staff to provide accurate sickle cell disease and trait information and referrals.

Methodology:  Clinical services, educational materials, and training sessions will be developed and implemented based on an assessment of available services and resources. Project activities will result in the development of self-sustaining sickle cell disease and trait follow-up services for newborns.

Partners:  The Genetics Program is proud to partner with the Hawaii Newborn Screening Program, Hawaii Community Genetics, Hawaii Birth Defects Program, Hawaii Early Intervention Services, Family Voices, Children’s Hospital of Oakland, and the Sickle Cell Disease Foundation of California to meet the goals of the project.

For more information go to:   https://www.sicklecelldisease.org/