At the Australian Twin Registry, we love to receive feedback from our members. We frequently receive queries on a wide range of topics and we try our best to answer them all.
After our last E-News, many members got in touch with queries such as: How can I get involved in a study? I’m not an identical twin – do you still need me? We thought it might be helpful to provide some feedback in this issue. You never know, we might just answer a question that you too had always wondered about...
Why are non-identical twins important?
The ATR is made up of many different types of twins and multiples; old, young, healthy, unwell, identical, boy/girl and so on. Yes - studying identical twins is an important part of medical research, but it can only give us half the answer – we need to gather data from both identical and non-identical twins and compare the two groups to work out if there is a difference.
Likewise, by studying boy/girl twin pairs, researchers can discover important information about gender differences in certain diseases and characteristics.
Why does research take so long – and why don’t we receive the results?
It is only natural that after giving up your time to participate in a study that you would be interested in hearing about the results. We too are always keen to find out about the contribution that registry twins have made to the research process – and ATR twins have certainly made a significant impact over the years.
Frustratingly however, research by its very nature is usually a long and sometimes slow process, with results often taking years to appear. Not only that, each research result is like a jigsaw puzzle piece where one set of results often adds only a small part to the overall picture. It can take years of work to find answers to the questions that researchers are asking about specific diseases and traits in the population.
We are constantly improving ways to provide feedback to our members. The internet is making this easier and we frequently post updates on our website, as well as Facebook and Twitter.
Why haven’t we been invited to a study yet and how can we get involved?
The types of studies we invite twins to participate in are completely dependent upon the areas of interest to researchers. This means that while you may be really keen to be involved in, for example, a study on Alzheimer’s – we may not have been approached by any researchers who are currently researching this area.
Moreover – each project is quite specific in terms of the sorts of twins it requires and it depends on the questions that researchers are investigating. For example – over the last 18 months or so the ATR has been involved in quite a number of projects utilizing female twins (particularly in Melbourne). Luckily however, this year it seems as if we have a study for almost anyone!
As people become increasingly tech-savvy, more researchers are tending to use methods such as online questionnaires to help obtain the data they need.