I Am A Health Professional
The discovery of the HFE gene in the mid 1990s has made it easier to diagnose haemochromatosis and we now know that around 1 in 150 people in Australia have the genetic predisposition to absorb and store more iron than is needed to maintain good health. We also know more about the serious consequences when an individual is not diagnosed early and is left untreated and we know that hereditary haemochromatosis as caused by the defective HFE gene, is more prevalent in people with European heritage.
However, there are many unanswered questions about haemochromatosis including why some individuals remain asymptomatic, why some individuals develop symptoms sooner than others, how compliant individuals are in maintaining venesections after initial de-ironing, how individuals feel about having a chronic condition knowing they can pass on a defective gene to their children, and many more.
WHY SHOULD I ENCOURAGE MY PATIENTS TO REGISTER?
The success of the Australian Haemochromatosis Registry depends on individual patients’ willingness to join and allow their de-identified data to be used by researchers. The more people register, the more records will be available to researchers. The richer the pool of information on haemochromatosis and on individuals’ experiences with liver disease, arthritis, diabetes and heart conditions, the more opportunities for research leading to improved health outcomes for people with haemochromatosis.
While your patients with haemochromatosis are not likely to get any direct benefits from participating in the Australian Haemochromatosis Registry, other than reminders to update their information and to ask you to check their iron levels, the results of research using their information could help to improve the health and wellbeing of Australians in the future.
WHAT DO I TELL MY PATIENTS ABOUT THE REGISTRY?
WHAT DO I TELL MY PATIENTS ABOUT THE REGISTRY?
We suggest you tell them why it is important – for their own family members and all those with haemochromatosis – and how they can register. Encourage them to tell their family members about the registry too.
Give them the telephone number for Haemochromatosis Australia 1300 019 028 if they have any questions about the registry. Let them know they can withdraw their consent at any time. Participation is completely voluntary and has no impact on their individual healthcare. If they are unlikely to have access to a computer you might download the Patient Information brochure and consent form for them.
WHERE CAN I FIND MORE INFORMATION TO SUPPORT MY PATIENTS?
Haemochromatosis Australia is the national patient support organization. It has many resources for patients and medical practitioners on its website including videos of individuals telling of their own experiences, podcasts for health practitioners, information brochures and fact sheets prepared by its Medical and Scientific Advisory Board. It also has a free telephone service 1300 019 028 available during business hours on weekdays where individuals can call for information.
Haemochromatosis Australia has also sponsored a ThinkGP accredited online course for General Practitioners and collaborated with APNA on the development of a module on haemochromatosis for primary care nurses.
WANT TO LEARN MORE ABOUT HAEMOCHROMATOSIS?
Haemochromatosis Australia raise awareness of haemochromatosis in the general public and the medical and health professions in order to increase early diagnosis and treatment. You will find comprehensive information about this disorder on their website.