Menzies Institute
for
Medical Research
Better Health and better lives for all Tasmanians
This is the vision for the Menzies Institue for Medical Research at the University of Tasmania, one of Australia's leading health and medical research institutes.
We are dedicated to advancing the frontiers of medical science. Our team of researchers works tirelessly to discover new treatments with the goal of enhancing the quality of healthcare for all.
The involvement of the Tasmanian community in Menzies' research has been one of the hallmarks of the Institute's success since. Tasmanians have always shown a great willingness to step forward and take part in research projects.
With your support, we will continue our ground-breaking research - right here in Tasmania.
Menzies Institute for Medical research is currently conducting research into Bone Marrow Failure Syndromes (BMFS). We have called this study Marrow map.
The study will run over the next 2 years and will require the participation of approximately 6000 Tasmanians.
If you or your organisation wish to get involved, please use the email link above to get in contact and we will gladly provide further information.
The study will run over the next 2 years and will require the participation of approximately 6000 Tasmanians.
If you or your organisation wish to get involved, please use the email link above to get in contact and we will gladly provide further information.
Reasons for Research
What are Bone Marrow Failure Syndromes?
Bone Marrow Failure Syndromes (BMFS) are a collection of immune system related medical conditions that cause the bone marrow stem cells to reduce or stop the production of healthy red blood cells, white blood cells, and platelets needed by the body. Bone marrow failure can be acquired by previously healthy people or inherited genetically through the family. Some people can manage their Bone Marrow Failure Syndromes through existing treatments, but the only established cure is a bone marrow transplant. Our research aims to uncover the genetic causes of this failure in bone marrow and circulating blood cells, and the insight from this work will lead to the identification of indicators for disease profiling and the development of better treatments.
Bone Marrow Failure Syndromes (BMFS) are a collection of immune system related medical conditions that cause the bone marrow stem cells to reduce or stop the production of healthy red blood cells, white blood cells, and platelets needed by the body. Bone marrow failure can be acquired by previously healthy people or inherited genetically through the family. Some people can manage their Bone Marrow Failure Syndromes through existing treatments, but the only established cure is a bone marrow transplant. Our research aims to uncover the genetic causes of this failure in bone marrow and circulating blood cells, and the insight from this work will lead to the identification of indicators for disease profiling and the development of better treatments.
Why Blood?
Why test blood?
Blood is made up of several components including plasma and several types of cells. Separating blood into its component parts allows us to look at molecules called biomarkers.
Why test DNA?
The DNA (deoxyribonucleic acid) sequence is the material that is found in our genes. DNA is remarkably similar from one person to the next, but tiny variations do occur, rendering each of us a unique individual. Most of these changes in our genes are harmless and cause such variation as eye colour and height. There can also be changes in genes that cause them not to work properly and lead to eye problems or disease. We will also look at other factors that influence gene expression and this is referred to “epigenetics”.
Blood is made up of several components including plasma and several types of cells. Separating blood into its component parts allows us to look at molecules called biomarkers.
Why test DNA?
The DNA (deoxyribonucleic acid) sequence is the material that is found in our genes. DNA is remarkably similar from one person to the next, but tiny variations do occur, rendering each of us a unique individual. Most of these changes in our genes are harmless and cause such variation as eye colour and height. There can also be changes in genes that cause them not to work properly and lead to eye problems or disease. We will also look at other factors that influence gene expression and this is referred to “epigenetics”.
Participating
What do we ask of you?
Complete the consent form after you have read the Participant Information Sheet and have had the opportunity to ask any questions. Donate approximately 25 ml of blood. You do not have to fast.
What will be done with your sample?
Researchers will investigate the cells in your blood sample, including the genetic information (DNA) contained in these cells. It is also possible that your sample may be tested by researchers in ways that are currently
unknown.
How will we look after your information?
Your blood sample and clinical information will be held in strict confidence at all times and labelled with a unique study code. Researchers will not be able to identify you as an individual.
Complete the consent form after you have read the Participant Information Sheet and have had the opportunity to ask any questions. Donate approximately 25 ml of blood. You do not have to fast.
What will be done with your sample?
Researchers will investigate the cells in your blood sample, including the genetic information (DNA) contained in these cells. It is also possible that your sample may be tested by researchers in ways that are currently
unknown.
How will we look after your information?
Your blood sample and clinical information will be held in strict confidence at all times and labelled with a unique study code. Researchers will not be able to identify you as an individual.
Sample Use
What will NOT be done?
Your blood sample will NOT be used for research involving reproductive technology, human embryos, or cloning. No sample or health information will be released to a third party unless it is to carry out research that has been previously approved by a Human Research Ethics Committee. Information will only be disclosed with your permission, except as required by law.
What are the benefits?
In the short term, there will not be any direct benefit. However, by participating in this research you are making a direct and valuable contribution to bone marrow research which has potential to minimise bone marrow diseases in others in the future.
What are the risks?
Although rare, some people experience bruising or feel faint after giving blood. All procedures will be carried out by suitably qualified staff to minimize these risks. Your welfare is always their priority.
Your blood sample will NOT be used for research involving reproductive technology, human embryos, or cloning. No sample or health information will be released to a third party unless it is to carry out research that has been previously approved by a Human Research Ethics Committee. Information will only be disclosed with your permission, except as required by law.
What are the benefits?
In the short term, there will not be any direct benefit. However, by participating in this research you are making a direct and valuable contribution to bone marrow research which has potential to minimise bone marrow diseases in others in the future.
What are the risks?
Although rare, some people experience bruising or feel faint after giving blood. All procedures will be carried out by suitably qualified staff to minimize these risks. Your welfare is always their priority.
Results and Consent
Will I be told the results?
You will not be informed of your individual results. The results of this research may be published in scientific journals and/or presented in scientific conferences. Such results will not contain any information that will identify you and only group summary statistics will be presented.
Any research information thought to be of relevance to your health or a possible incidental finding will be carefully examined by an appropriate team of ethical and medical advisors. Where there is clear evidence of information of medical importance to you or your family, we will do our best to contact you so that you can decide if you want to learn more about that information. This may be of benefit, but it may also pose a risk to your ability to obtain new life, trauma, and disability insurance cover.
If important clinical information or unforeseen genetic predictors are discovered, a trained Genetic Counsellor is available when required to assist you with the interpretation of the genetic information and its implications.
Informed Consent
Please read all the information provided before providing consent. Participation in this project is purely voluntary.
You will not be informed of your individual results. The results of this research may be published in scientific journals and/or presented in scientific conferences. Such results will not contain any information that will identify you and only group summary statistics will be presented.
Any research information thought to be of relevance to your health or a possible incidental finding will be carefully examined by an appropriate team of ethical and medical advisors. Where there is clear evidence of information of medical importance to you or your family, we will do our best to contact you so that you can decide if you want to learn more about that information. This may be of benefit, but it may also pose a risk to your ability to obtain new life, trauma, and disability insurance cover.
If important clinical information or unforeseen genetic predictors are discovered, a trained Genetic Counsellor is available when required to assist you with the interpretation of the genetic information and its implications.
Informed Consent
Please read all the information provided before providing consent. Participation in this project is purely voluntary.
Opting Out
What if I change my mind?
The blood and personal information you provide will be stored until it is used or until you contact us to request it be destroyed.
Will I be reimbursed?
You will not be paid for your participation in this project. Future contact We ask you to indicate on your participant consent form if you would like to be contacted again in relation to participating in future studies or possibly even supplying further blood samples.
Other issues
For independent advice or if you have any complaints about any aspect of the project, the way it is being conducted or any questions about your rights as a research participant, you can contact the Human Research and Ethics Committee Tasmania on (03) 6226 747.
The blood and personal information you provide will be stored until it is used or until you contact us to request it be destroyed.
Will I be reimbursed?
You will not be paid for your participation in this project. Future contact We ask you to indi
Other issues
For independent advice or if you have any complaints about any aspect of the project, the way it is being conducted or any questions about your rights as a research participant, you can contact the Human Research and Ethics Committee Tasmania on (03) 6226 747.
