PHRESH Project Looks at the Impact of Thalassemia in California
by Susan Paulukonis, MA, MPH, California PHRESH Project
Beginning in Fall 2012, the Centers for Disease Control and Prevention provided two years of funding to develop and share data about thalassemia in California. The project, titled Public Health, Research, Epidemiology, and Surveillance in Hemoglobinopathies (PHRESH) follows up on the earlier Registries and Surveillance for Hemoglobinopathies (RuSH) project, which used data from many sources to count those with thalassemias in the state. Surveillance in the project title refers to looking at a public health issues such as thalassemia over time to see if the impact of the condition, the type of care being delivered, and the quality of life and outcomes are changing.
PHRESH funding allows researchers to delve deeper into the collected data and determine its accuracy. Project staff will share the data with those living with the disorders and their families, health-care providers, community-based organizations, and policy makers, as well as using it to continue to raise awareness of thalassemia in the state.
Among the types of information the project hopes to be able to publicize:
- How many people impacted by thalassemia (including alpha and beta thalassemia) are living in California? How old are they? What racial and ethnic groups are most affected? What types of insurance (private, government, self-pay) do these people have?
- What areas of the state are most impacted by thalassemia?
- What are the complications, procedures, and treatments most frequently associated with thalassemia, and when are they most likely to occur or be necessary in the lifespan? How do these differ between transfusion-dependent and non-transfusion–dependent individuals?
Partners in this work are Dr. Lisa Feuchtbaum at the California Department of Public Health’s Genetic Disease Screening Program, Dr. Elliott Vichinsky of Children’s Hospital & Research Center Oakland, and Dr. Tom Coates of Children’s Hospital Los Angeles. In addition, Dr. Catherine Madigan at UC San Diego Rady Children’s Hospital, Dr. Theodore Wun at UC Davis Medical Center, Dr. James Huang at UC San Francisco Children’s Hospital and Dr. Susan Claster at UC Irvine Medical Center are partners in the effort to determine the accuracy of the data. The project is set to conclude in September 2014.
For further information on the project, please contact Lisa Feuchtbaum: lisa.feuchtbaum@cdph.ca.gov.
The California PHRESH Project is a two-year project funded by the Centers for Disease Control and Prevention. PHRESH stands for the Public Health, Research, Epidemiology & Surveillance in Hemoglobinopathies.
