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Strategies To Increase Detection of Hemochromatosis

Sharon M. McDonnell, MD, MPH; David L. Witte, MD, PhD; Mary E. Cogswell, RN, DrPH; and Rosemarie McIntyre, RN, MPH
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From the Centers for Disease Control and Prevention, Atlanta, Georgia; and Laboratory Control, Ltd., Ottumwa, Iowa. Acknowledgments: The following organizations participated in the working group: the American Liver Foundation, the American Medical Association, the British Haemochromatosis Society, the College of American Pathology, the Common Ground Institute for Iron Overload Diseases, the Iron Overload Diseases Association, the National Arthritis Foundation, and the Southern Iron Overload Diseases Association. Requests for Reprints: Sharon McDonnell, MD, MPH, Division of International Health, Mailstop C-08, Centers for Disease Control Prevention, 1600 Clifton Road, Atlanta, GA 30303; e-mail, sem0@cdc.gov. Current Author Addresses: Dr. McDonnell: Division of International Health, Mailstop C-08, Centers for Disease Control Prevention, 1600 Clifton Road, Atlanta, GA 30303. Dr. Cogswell: Division of Nutrition and Physical Activity, Centers for Disease Control and Prevention, Mailstop K-25, 4770 Buford Highway, Atlanta, GA 30341. Dr. Witte: Laboratory Control, Ltd., 1005 East Pennsylvania Avenue, Ottumwa, IA 52501. Ms. McIntyre: Division of Training, Epidemiology Program Office, Mailstop D-18, Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30333. Note: This article is one of a series of articles comprising an Annals of Internal Medicine supplement entitled “Iron Overload, Public Health, and Genetics.” To view a complete list of the articles included in this supplement, please view its Table of Contents.

Copyright ©2004 by the American College of Physicians

Ann Intern Med. 1998;129(11_Part_2):987-992. doi:10.7326/0003-4819-129-11_Part_2-199812011-00010
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As part of the Iron Overload, Public Health and Genetics conference, sponsored by the Centers for Disease Control and Prevention in March 1997, a working group was convened to consider strategies to increase early case detection of hemochromatosis.This group emphasized that the primary public health goal should be to diagnose hemochromatosis before symptoms appear. To reach this goal, education and action need to be targeted to physicians and other health care workers, laboratorians, administrators, payers, and the public.

Strategies to disseminate updated information and increase early case detection were prioritized according to expected effectiveness.Strategies targeting physicians are 1) to identify national and local physician-leaders and 2) to educate physicians about hemochromatosis in basic, graduate specialty, and continuing medical education. Strategies aimed at the health system are 1) to encourage laboratories to provide the transferrin saturation test as part of routine laboratory panels and 2) to work with policymakers and payers to allow reimbursement for case detection. Finally, public education is recommended to increase lay support for the early diagnosis of hemochromatosis. Attempts to educate the public should be aimed first at persons who receive diagnoses of hemochromatosis in order to ensure that they are properly treated and then at asymptomatic persons who could be screened as part of health appraisals. Although identifying physician-leaders and educating physicians are the highest priorities, physicians should not be targeted at the exclusion of payers and the public. Simultaneous efforts to reach all groups in appropriate ways should be initiated to provide the interest and infrastructure necessary to decrease morbidity and mortality from hemochromatosis.


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Figure 1.
Strategies to increase early detection of hemochromatosis.
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