Public Health Research, Epidemiology, and Surveillance for Hemoglobinopathies (PHRESH) Sickle Cell Disease (SCD)/ Thalassemia Case Reporting

Investigator: James Huang, MD
Sponsor: Public Health Institute

Location(s): United States


PHRESH focuses on three areas: surveillance (monitoring), health promotion and prevention of health complications, and laboratory capacity building. The project has launched in California, Mississippi, and Georgia, and will address several objectives of the “Healthy People 2020 (HP2020), Blood Disorders and Blood Safety” initiative, including:

  • Increasing the number of people with hemoglobinopathies who receive:
    • recommended vaccinations (shots)
    • early and continuous screening for health problems related to their condition
    • appropriate treatment

To address HP2020, the primary goals and objectives of PHRESH are:

  • To develop a monitoring program within a defined geographic area that provides accurate information on the burden of disease (how the disease impacts individuals andhealth complications by improving the quality of care for people with hemoglobinopathies (particularly focusing on vaccines/shots), early and continuous screening, and the use of appropriate treatments
  • To develop a way for state and/or regional laboratories to improve accuracy of hemoglobinopathy testing for all hemoglobinopathies.

The information gained from PHRESH will serve as a model for national and international agencies to address the developing needs of people living with hemoglobinopathies.