Developing a National Registry for Hemochromatosis

Abstract

Hereditary Hemochromatosis (HH) is a disorder where iron and ferritin concentrations in a patient's blood are much higher than normal healthy levels. The main therapeutic intervention for individuals with HH is removing 300-500 mL of blood every few months to maintain ferritin concentration within acceptable ranges. The blood collected during these venesections is usually discarded as there is a belief that blood with high levels of ferritin are not suitable for blood transfusion purposes. Australian Red Cross Blood Services voluntarily collects blood from donors for subsequent use in blood transfusion. Annually more than 700 thousand units are transfused within Australia and there is a constant need for new donors given the significant imbalance between supply and demand of blood products. Besides red cell transfusions, the Red Cross also issues donor blood for development of many other blood products essential for patient health care. The HH blood can currently be used for other blood products if not for red cell transfusion. However, there is evidence to suggest that there is no significant difference between the red cells of the normal healthy population compared to those from HH patients. Australian Red Cross has developed a mobile computer application (High Ferritin “app”) as they have started collecting blood from HH patients. Though there is little or no awareness about the existence and use of this High Ferritin app in general HH population, their doctors and nurses collecting their blood for therapeutic purposes. This chapter describes possibility of saving and utilizing the blood collected from hemochromatosis patients for therapeutic purposes. A national hemochromatosis patients registry, in collaboration with High Ferritin app (HFa) developed by Australian Red Cross Blood Services, accessible to the patients, their doctors and Red Cross Blood Collection Sservices 24 hours a day anywhere in the country can allow the patients to donate the blood collected for therapeutic purposes at any affiliated blood collection center in the country after they automatically get a message either by email or text message after their blood results have been reviewed by their doctor and they are required to go for venesection.