CLINICAL OR TREATMENT RESEARCH
Clinical research studies, such as clinical trials, are ways of testing how well treatments work and how safe they are. They usually observe the effect of new treatments or new ways of using known treatments on humans. A new drug treatment will need to pass several stages of testing before it can be made available more widely.
Clinical trials often need large numbers of people to produce meaningful results. Because bleeding disorders are rare, clinical trials researching treatments for bleeding disorders may involve people both in Australia and overseas.
CURRENT AUSTRALIAN RESEARCH STUDIES
VELORA Discover – an observational study of bleeding and treatment in people with type 1 von Willebrand disease (VWD): seeking adult men and women (18 yrs+) with type 1 VWD to undergo screening tests, regular monitoring and reporting of bleeding events and undertake questionnaires on health and daily life. Available to patients at 3 Australian HTCs – Royal Prince Alfred Hospital, NSW; The Alfred, VIC; Fiona Stanley Hospital, WA – contact the HTC for more information (Hemab)
THOR (The Haemophilia Osteoporosis Registry) Study – investigating the muskuloskeletal health of men with and without moderate/severe haemophilia A: seeking adult men (18 yrs+) to undergo a free comprehensive musculoskeletal health assessment at Monash Medical Centre, Melbourne (Monash University/Monash Health/The Alfred HTC)
Ask your Haemophilia Treatment Centre for information on any other current studies
Clinical trials database
You can also search the Australian Clinical Trials database to find out what trials are currently listed in the Australian New Zealand Clinical Trials Registry – eg, by clicking on the SEARCH FOR A CLINICAL TRIAL button and then searching for the term “haemophilia” as a keyword.
PARTICIPATING IN CLINICAL RESEARCH
Although information on specific clinical trials is listed on this web site for your information, this is not an endorsement of the research study by HFA.
Participating in a clinical trial is voluntary. Before you take part in a clinical trial, make sure you are satisfied that the study will be in your interests and that your health and privacy will be protected. All Australian clinical trials must follow the guidelines made by the National Health & Medical Research Council and must have approval from a registered Human Research Ethics Committee.
If you have concerns about a research project, you can make a complaint to the Human Research Ethics Committee that approved the study.
THESE WEB SITES HAVE MORE INFORMATION ON WHAT CLINICAL TRIALS ARE AND HOW THEY WORK:
Australian Clinical Trials: Australian Government National Health and Medical Research Council
Clinical Trials: My Doctor Website
Clinical trials – Better Health Channel