Vanessa Connell from the Royal Children’s Hospital (RCH) in Melbourne has joined us as the RCH’s new Australian Genetic Heart Disease Registry Coordinator.
Vanessa is excited about working on the Registry and working with RCH families to help improve our understanding and care of genetic heart disease in Australia.
“While working with children and families who have inherited heart conditions, I am often asked questions like ‘how many others have this?, what ages?, what treatments have been used and what has worked?’. I truly believe some of these questions will be easier to answer when we have national data on all Australian families, which is why the Registry aims to enrol every family in Australia with a genetic heart disease.
“I would like to thank the families in Victoria who have already contacted me or the Registry to enrol. One great benefit for families is that the Registry sends an update about new treatments or tests, answers to frequent questions, events and other items of interest.”
Australian Genetic Heart Disease Registry Chair Professor Chris Semsarian added: “This new position will help us engage more Victorian-based families and inform them about the Registry. We’re thrilled to have someone of Vanessa’s experience and ability joining our team. We’re looking forward to Vanessa’s contributions.”
This position was made possible through joint funding made by the RCH and the Australian Genetic Heart Disease Registry.
Vanessa will continue her role as the Electrophysiology Nurse Consultant and Research Coordinator at RCH.
For more information
If you have a genetic heart disease and attend the RCH clinic, you can find out about the Registry and how to enrol by contacting Vanessa either via email or calling (03) 9345 4239.
Please note: all participant information is kept strictly confidential in a secure database.