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By learning more about hemochromatosis and its implications, CDC can plan public health programs that will increase awareness of this blood disorder and result in earlier detection and diagnosis. Early detection and treatment of hemochromatosis offers one of the best strategies for preventing complications.

Hemochromatosis and Public Health

In September 2009, CDC convened a scientific meeting on hemochromatosis and invited experts worldwide from the fields of medicine, epidemiology, genetics, and molecular biology. Recent clinical and scientific information was shared to help discuss the role of public health
This meeting was convened to discuss directions for future public health priorities. These priorities include:

Improved clinical management of people who have hemochromatosis

  • Epidemiologic activities, with a special emphasis on laboratory issues and genetic research
  • Enhanced partnerships between CDC, state and local health departments, health care providers, and community patient groups to promote education on hemochromatosis

Understanding Diagnosis and Treatment of Hemochromatosis

The diagnosis of hemochromatosis is made difficult by the lack of characteristic clinical symptoms and a specific laboratory test. To learn more, CDC has funded the Medical University of South Carolina to survey more than 5,000 adults who have been diagnosed with hemochromatosis. The primary study objectives are:

  • To characterize the circumstances surrounding and resulting in hemochromatosis diagnosis, including presenting symptoms, laboratory tests, family history, and other factors
  • To assess the treatment and response to treatment of patients after the diagnosis of hemochromatosis was made


The goal of this study is to improve the understanding of diagnosis so that patients are recognized and appropriately treated. CDC will also use these survey results in developing patient and physician education.

Online Training for Healthcare Providers

CDC developed an online training course for health care providers entitled Hemochromatosis: What every clinician and health care professional needs to know. In this course, providers can learn more about the pathophysiology, epidemiology, diagnosis, treatment, and management of patients with adult onset hemochromatosis. To access this course, please visit the Training and Education page.

 

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