Registry news Database and website manage your details he ATR has worked hard to Aujard, has developed a system not allow marketing companies to T develop and launch a new that lets us track each and every access or ‘purchase’ our member’s database and website. letter and response from a twin details under any circumstance. The database is one of the most pair, ensuring that our members are In addition, if you have provided important tools we have for not overloaded with requests to be any extra information for us to hold ensuring we retain updated details involved in studies. on the Registry database, such as for all of our members. It is held on It is important to note that details a secure server, protected by from our database are never password-only access. passed on to others without the Our database designer, Kelly express consent of the twin. We do New faces join the team ... hanks to funding received from the National Health and Medical T Research Council in 2004, the ATR has been able to expand its ranks with new staff, including a Deputy Director, Sue Treloar, who works at the Queensland Institute for Medical Research. Sue has a wealth of experience in twin studies, most recently on endometriosis. Her appointment further establishes the ATR as a truly national resource. In addition, we have developed a team of experienced ATR Research Assistants: Marian, Susan, Jackie, the name of your spouse, this Helen and Shaie. Led by Project Support Officer Jenny information remains strictly Boadle, this team allows us greater opportunity for confidential and is not passed on to telephone follow-up and faster turnaround times for researchers. researchers. When twins agree to be involved You may hear from them in the future regarding Sue Treloar in a study, their details are provided updates to your contact details, or seeking your to the research group by secure interest in a research study. File Transfer Protocol (or FTP) Other recent staffing changes have which ensures that the electronic seen our Co-ordinator, Kim Dorrell, records cannot be intercepted by start maternity leave following the happy an unknown third-party. arrival of her son, Matthew. Kim has All requests by researchers to passed her role to Emily England. Emily Jenny use the Australian Twin Registry are carefully reviewed. Approved projects must satisfy ethical guidelines and be of significant value to the area of proposed research. Jackie Helen Shaie Marian Susan Get online The website contains new and updated information for twins and ... and a legend leaves our ranks researchers alike. Its new look is he voice of the ATR for 15 years, Shirley Hanrahan easier to navigate and read, and the T pictured right, retired earlier this year. Shirley came to site contains a section for secure the ATR after being recommended by Professor David registration of new twins online. Hay, who was impressed with her work interviewing Check it out at www.twins.org.au. people who had been recently paroled. Throughout her time at the ATR Shirley played an Triplets and more important role helping to recruit twins to the Registry, as well as We may be called the Australian enrolling ATR twins on many different studies. Most recently Shirley Twin Registry, but we also have was instrumental in helping to recruit over 1000 twin pairs to the triplet members on our database Australian Twins and Sisters Breast Density Study. and are interested in finding more! In addition, Shirley undertook the enormous task of tracing the If you are a triplet or higher-order ‘return to sender’ mail items received every year from the Twins multiple, we would love to hear from Newsletter and various study mail-outs. you and your siblings. The ATR would like to extend a very big thank you to Shirley for all Call us free at the ATR on 1800 her hard work and dedication over so many years and wish her all the 037 021 or register by logging on to best in her retirement. our website www.twins.org.au. 2 Twins 2006 Twins2006.pmd 2 11/8/2006, 8:00 PM Registry news Meet our new Advisory Board his year has seen important changes in the ATR with Price Waterhouse in Hong Kong, and as a T governance structure, with the introduction of a Weapons Electrical Engineering Officer in the Royal new Advisory Board and Expert Reference Group. Australian Navy. The Advisory Board provides us with a wealth of Vince is a firm believer in twins making a contribution expert advice and guidance. Its members bring to medical research for the benefit of together a wide range of skills and expertise to Australians generally. He told Twins 2006 enhance the Registry’s ability to facilitate and support he has seen ‘a real commitment to medical and scientific studies. The Advisory Board also furthering the ATRs objectives by both ATR serves to protect and balance the interests of all management and the scientific community stakeholders and ensures that all Australian researchers that takes advantage of the facility it offers.’ have fair and equitable access to the facility. The Advisory Board also comprises: Its Chair is IBM Asia Pacific executive Vince Pollaers. Professor Peter Klinken (Director of the Vince and his brother, John (who is CEO for Asia of the Western Australian Institute for Medical world’s biggest alcoholic drinks company, Diageo) are Research), Professor Margaret Otlowski (a Vince Pollaers both long-time members of the ATR, joining up at leading expert in law and ethics from the around age 16. Both fondly (but not so clearly) University of Tasmania), Dr Paul Jelfs (who runs the remember a twin study they were involved in early on Cancer Institute of New South Wales and is a father of which looked at the effects drinking different amounts twins), Professor Annette Dobson (Professor of of alcohol had on their balance and other tasks. Epidemiology and Biostatistics at the University of With a keen interest in organisational development Queensland), Associate Professor Paul Lancaster (who and culture, Vince has shaped the future direction of started Australia’s National Perinatal Statistics Unit), business models and product portfolios for a range of Marissa Walters (who was nominated by the Australian companies. Vince joined IBM in 2001 and for four years Multiple Birth Association), and William Mackerras (a served as General Counsel of IBM Australia & New non-identical twin in his 20s and long-standing member Zealand, managing a team of 17 lawyers and providing of the ATR). legal support to all IBM business units in the region. He Will is the Advisory Board’s Twin representative, a worked as a solicitor for a number of internationally vital position once held by his father, Malcolm recognised law firms, as an IT marketing consultant Mackerras, AO, who is also a non-identical twin. We need you! who have never, or rarely, used If you are interested in helping to Tracking marijuana use of cannabis as it is for them to recruit explore the differences between twins born in the ’70s those who use it more often. you and your twin (or your twin If your date of birth falls between children), please contact the ATR. The ATR has recently started 1972 and 1979, watch for your recruiting twins for an important new invitation to join this important study into the genetics of marijuana In a heartbeat study. If you are really interested in use and mental health in Australia. Atrial Fibrillation, or AF, is an this study, you can contact us The study is a US-Australian-NZ abnormality of the heart’s rhythm without waiting for your letter. Just collaboration run by Dr Michael that results in an irregular pulse. AF call the ATR on 1800 037 021. Lynskey at Washington University in is the most common heart rhythm St Louis, Missouri, and Professor Nick disturbance in our community and a Martin at the Queensland Institute of Identical but different? significant risk factor for stroke and Medical Research in Brisbane. Are you an identical twin and had heart failure. We hope to find out It is generally acknowledged that an illness that your twin hasn’t? more about the role of genetic and marijuana is used widely in the Maybe you are an introvert, but environmental factors in AF community, and there is still a lot of your twin’s an extrovert? We’d love development by studying identical controversy surrounding the potential to hear from you! and non-identical twins. health consequences of this drug, Researchers around Australia are Studies at Sydney’s Victor Chang including respiratory problems, the looking for twin pairs who differ in Cardiac Research Institute suggest development of a dependence and behavioural or disease traits. that inherited gene defects are an mental health problems. We all know that identical twins important cause of AF, but what the Understandably, there is a great share identical DNA, but did you genes are, let alone how they cause deal of public interest in the factors know this DNA can be ‘wrapped up’ disease, is poorly understood. that lead to infrequent and frequent differently within a chromosome? It The researchers are seeking to marijuana use. To explore this seems these differences can collect medical information and question, the researchers are actually turn genes on or off. DNA samples from twin pairs in seeking twins born between 1972 Looking at these differences will which one or both twins have AF. and 1979, regardless of their history help researchers pinpoint genes If you or your twin has AF and with marijuana.