About us

Have you been diagnosed with a HHT?
Hereditary Hemorrhagic Telangiectasia (HHT) is an autosomal dominant condition that affects approximately 1 in 3,000 to 1 in 10,000 people. As HHT is a rare genetic condition little research has been conducted into the impact HHT has on patients diagnosed with the condition. Through the HHT Alliance, we are inviting people and their proxies from all over Australia to submit information about their HHT diagnosis so that researchers can develop new insights into this genetic condition.

The HHT Alliance Principal Investigator:
Professor Ingrid Winship
Clinical Geneticist
Genetics Medicine and Familial Cancer Centre
The Royal Melbourne Hospital

In order to submit your information to the registry we ask that you take the time to complete the online questionnaire. You will be asked questions about your medical history, your diagnosis and the treatments that you have received.

Before you start you will need to sign a consent form to give us permission to use the information that you provide us for research purposes. Further information regarding this can be found on the Frequently Asked Questions (FAQ) page.

Consent forms:
Consent form for patient       Consent form for next of kin

BioGrid Australia:
For many years doctors and hospitals have collected information on different diseases and the way in which they are diagnosed and treated for the purposes of research. Most of this information is stored on individual computer databases.

BioGrid Australia provides the technology to link together the anonymous patient information from all of these different databases in a way that maintains the privacy of the patient and the security of the information.

This means that information about greater numbers of patients can be combined which leads to more accurate and powerful research. For more information about BioGrid Australia please visit the website at www.biogrid.org.au