Partner in focus: Sue Malta, Senior Researcher-Manager, Twins Research Australia

What is the vision of Twins Research Australia?

Twins Research Australia is Australia’s only national twin research centre of excellence and maintains one of the largest volunteer twin research registries in the world. Our vision is for a vibrant and unified global twin research community to improve health and wellbeing through new knowledge for the benefit of all people.

Based in the Melbourne School of Population and Global Health at the University of Melbourne, we both undertake, enable and support twin research in institutes and hospitals across Australia and globally.

Twins Research Australia is also a recognised leader in the fields of public health and health promotion, and we continue to expand our reach by exploring the possibilities for the implementation and use of large-scale population administrative data linkage initiatives.

What are some of the challenges you face?

Raising awareness of the unique burdens of multiple-birth families is challenging. There is very little additional support provided to parents having two babies (or more) and there are many practices that are out-dated, and data is usually based on individual births. In the past we have conducted forums with researchers, clinicians and peak body associations and, as a result to review the evidence and to find out directly what is most important to people. We subsequently released a report designed to highlight potential ways to address social and health inequities of multiple-birth families: Multiple Perspectives: What Support Do Multiple Birth Families Need To Live Happy And Healthy Lives? in collaboration with the Australian Multiple Birth Association, the Twin and Multiple Births Association UK, and the International Council of Multiple Birth Organisations. This paper aims to stimulate discussion, identify recommendations, and influence practice and policy-making in Australia, but it’s an uphill battle.

We also work closely with international partners and collaborators. Together with Twins and Multiple Births Association UK and St George’s University of London, we set up the Global Twins and Multiple Birth Priority Setting Partnership, which, again, brought together parents, carers, clinicians and scientists to identify the top 10 priorities for research in twin and multiple-birth health.

Both these priority-setting initiatives are powerful and useful, as they can help guide national and international research funding agendas. They also give more validity to research questions by considering the views of a wide range of stakeholders. However, we need ongoing research and engagement to ensure that evidence is current and well-informed. To do this requires significant injections of funding. We regularly seek grants, partnerships, and support, but with governments cutting funding initiatives this is becoming increasingly difficult. We also need policy makers to understand that twin research is not only for and about twins but benefits the health of everyone.

Where is twin research heading? How will it contribute to improving health in the future?

Twin research plays an important role in understanding the interplay between genes and environment. By studying the differences and similarities between and within twin pairs, crucial insights into complex diseases have been discovered. To this end, we continue to expand our reach, and we are currently exploring the possibilities for the implementation and use of large-scale population administrative data linkage initiatives. These data linkage projects will track the health and wellbeing of the population over time and provide valuable information for policy and research. In partnership with the Centre for Health Equity at the University of Melbourne, Twins Research Australia received seed funding from the Melbourne Centre for Data Science to establish a proof-of-concept project with the Victorian Government’s Centre for Victorian Data Linkage: the project will be ready to commence shortly.

Can you explain one of your organisation's recent innovations?

We recently set-up a unique collaboration with the newly established Gen V (Generation Victoria) project, to recruit all twins born in Victoria over the next two years to create the first-ever Australian twin-birth cohort. This highly innovative approach will allow us to compare health outcomes of twins versus singletons and to track these children over time — providing much needed insight into birth and development for the benefit of future generations of children in Australia and worldwide.

With the advent of COVID, Twins Research Australia, like many, have had to change the way we normally interact with our members. In April 2020, we launched our online Twins Research Australia COVID-19 Knowledge, Experience, Reaction and Resilience (TRACKERR) study to capture a holistic view of how Australian twins dealt with the pandemic. This unique, ongoing series of surveys has been designed to collect valuable longitudinal data on physical, mental, and social health, allowing us to understand the future impact of COVID-19 on twins and their families.

We see our relationship with the multiple birth community as two-way: they help us as volunteers, and we contribute back to the twin community. Towards the end of 2021 for instance, we held our first online TwinsFest to thank our study volunteers for their 40 years of support. The innovative event was a great success and meant that twins from all regions of Australia were able to participate. We were also able to showcase a special video message we received from our International Patron, Princess Mary of Denmark, congratulating TRA and emphasising the important work we do.

Earlier this year we launched our new Twin Pregnancy and Parenthood website for new and existing members. While the content is tailored to families who are expecting twins, the website also incorporates information about the first year of life. All information is evidence-based and is designed to provide much needed support to parents during twin pregnancy and birth. In addition, we provide valuable information about the importance of zygosity testing (including a special testing rate).

What is it about the partnership with Healthdirect Australia that is most valuable to you?

Healthdirect Australia is one of Twins Research Australia’s most important partners, as like us, it provides a terrific resource for our members and their families that is both up to date and evidence-based. Healthdirect's community profile helps Twins Research Australia increase our reach, particularly to regions that have few health services that are equipped to deal with multiple births. Having twins is wonderful and exciting, but it can also be daunting and bewildering — our partnership with Healthdirect ensures that multiple birth families have access to online help and expertise wherever they are in Australia.