A national hemochromatosis patient survey will take place in 2010; people with hemochromatosis diagnosed after 1996 are eligible to participate. The study is funded by the US Centers for Disease Control and Prevention (CDC), Atlanta and will be carried out by the Medical University of South Carolina (MUSC). Organizations such as the Iron Disorders Institute (IDI) have been asked to reach out to their members and ask if they wish to participate. The purpose of the study is to see how events have changed for the hemochromatosis patient since the discovery of HFE and increased awareness about genetic and non-genetic iron overload.

Time to register is limited and closes at the end of January 2010. If you wish to take part in this important study you must let us know. Please fill out the form provided below.  No personal identifiers will be passed to the investigators or funding agency of this study; Iron Disorders Institute maintains the confidentiality of your name and contact details.

If you respond to a request for participation, please do not sign up at a second site. You will be sent an envelop with the survey form enclosed and labeled with a code that identifies you ONLY to Iron Disorders Institute (if you respond to our request). Other participating organizations will follow a similar approach--no names will be shared between organizations--however, you may be contacted more than once if you are a member of more than one organization.

The  responsibility and role of IDI in this study is to reach out to patients with hemochromatosis, who are diagnosed after 1996 ; to assure patient privacy and to respond to questions from patients. You may email questions directly to me: Cheryl Garrison, Executive Director: cgarrison@irondisorders.org

Or call and leave a message that I can return: toll free 888-565-4766

The last time a survey of this magnitude was done on behalf of hemochromatosis patients was reported in 1999 (McDonnell, et al. Am J Med. 1999;106:619–62)*; please help us make this 2010 survey the very best it can be.

*If you wish to read the highlights of the findings you may request a PDF copy of the journal article.

REGISTER TODAY—and then get family members to do the same!

Cheryl Garrison,
Executive Director,
Iron Disorders Institute