In Australia, medical guidelines are mostly based on research studies where most of the participants are of European ancestry. These guidelines are not always suitable for people from other ancestries. The SAGHA study aims to increase South Asian involvement in health and genetic research so that we can improve healthcare for South Asian communities living in Australia.

The SAGHA pilot study focuses on heart disease. Heart disease is the leading cause of death in Australia and the world. If you are South Asian, you are more likely to get heart disease compared to someone of European ancestry, even after you consider lifestyle factors. We do not fully understand why this is because of the lack of data. South Asians make up almost less than 2% of genetic study participants. For this pilot study, we will assess heart disease risk, including genetic risk, in 200 South Asians living in Queensland.

The study is led by researchers at the University of Queensland, led by Dr Sonia Shah and supported by a team of researchers and healthcare professionals. The study is funded by the Australian Government’s Medical Research Future Fund, Genomics Health Futures Mission, and has been approved by the University of Queensland Human Research Ethics Committee. This ethics approval ensures that the research is done in a way that protects the dignity, rights, and welfare of study participants, as outlined in the Australian Privacy Principles (2014), and the National Health and Medical Research Council (NHMRC) Guidelines for Ethical Conduct of Human Research (2007 – updated in 2018).

Individuals can take part if they are:

• Over 18 years of age AND
• Have South Asian ancestry, defined as having ancestral origins in India, Pakistan, Bangladesh and/or Sri Lanka AND
• An Australian citizen or permanent resident living in Queensland AND
• Have a valid Medicare card

No. We unfortunately will not be able to accept every person who registers their interest to participate as this is a pilot study and we are only recruiting 200 individuals. We also want to make sure that many different South Asian communities are represented. If we receive additional funding to this study, we may be able to accept more participants and can contact you if this happens.

There is no financial cost to participating in this study.

Once we have received your completed survey and blood sample we will send you a $50 e-gift card to say thank you. You can also choose to donate this amount back to support continued research being done by the SAGHA research team.

• Blood samples will be used to measure your blood glucose, cholesterol, and other similar measures (called blood biomarkers) that are important for heart disease risk
• Blood samples will also be used to generate genetic data.
• Information from the survey, blood biomarker and genetic data will all be used to understand your heart disease risk.
• It will NOT be used for looking at risk to other current health conditions or future health conditions.

You can choose to receive information about your heart disease risk if you want.

Only data and biological samples necessary for the study will be collected. All data will be stored on secure servers behind the UQ security firewall, with appropriate data protection measures, including password-protected access, data encryption and multi-factor authentication. Biological samples (e.g., blood samples) will be stored in a secure, restricted-access location at the University of Queensland.

Yes. Best ethical and legal practice will be followed to keep your information confidential and private. Your samples will be labelled with a unique ID number (not your name) before being stored. Your genetic data will be linked to this unique ID and stored securely and separately from your personal details (such as name and contact details). You will not be identified personally in any report or publication about the SAGHA study.

Our consent form and online questionnaires will need to be completed in English. You may get a family member to help you. If this is not possible, please contact us at [email protected].

If you are found to be at high risk of heart disease, we highly recommend to follow-up with your doctor to confirm and manage risk. As this is a research study, all findings would first need to be confirmed within the Australian healthcare system before you can receive any further healthcare. A permanent resident is eligible for Medicare. Without Medicare, medical follow-up in Australia may incur a high financial cost.

Yes, if they meet the criteria listed in Question 3.

No. This study will not find information regarding paternity, or consanguinity (relatedness by blood).

Anyone with and without health problems, including if you already have heart disease, can take part.

Yes. Regardless of your genetic test results, you can still participate in this study. Your data is valuable to help our goal for better healthcare for future generations of Australian South Asians.

Yes. It is completely up to you if you wish to find out more about your health. You can participate in research but opt out to receive the test results. Regardless of whether you choose to receive your risk, your data will still be valuable and help our goal for better healthcare for future generations of Australian South Asians.

Yes. You can opt to only receive results that estimate risk of heart disease from traditional (non-genetic) factors instead of receiving results about genetic risk. You can also choose not to receive any results about your risk (see Question 17).

No. There are no restrictions in lifestyle, dietary or types of treatment you receive throughout the study. You can continue taking your regular medications. You will not be asked to take any new medications as part of this study, and will not be asked to change your diet to take part in this study.

Yes. We can help you by arranging to have a trained research officer verbally conduct the survey via telephone with you at an agreed upon time. If this is not suitable, we can provide you with a paper copy of the survey to complete at home and return via post at your earliest convenience.

Yes. You can stop participating in SAGHA study at any time. Withdrawal from the study at any time will not affect your primary care in any way, your relationship with the research team, or with the University of Queensland.

No. Not only is it impossible to do any sort of cloning or genetic engineering on your DNA material, your DNA will not be mishandled in any way.

Please feel free to email the research team at [email protected]. If you would like a call, please email us your contact details and one of our team members will be in touch.