Sydney, AUSTRALIA, May 3, 2018. The Duchenne Registry Australia, formerly DuchenneConnect Australia, has implemented new features and tools to help enhance the user experience and increase its capability to improve access to new treatments, clinical trials and gold standard levels of care for Australians with Duchenne muscular dystrophy.
The changes coincide with a milestone celebrated by Parent Project Muscular Dystrophy (PPMD)’s The Duchenne Registry (based in the USA). This registry, formerly known as DuchenneConnect, has collected 10-years of patient reported data. In 2017, Save Our Sons Duchenne Foundation partnered with PPMD to bring the registry to Australia and since then it has gone from strength to strength.
Over the past 10 years, not only has data from The Duchenne Registry been used to improve care and enhance the development of potential therapies for Duchenne, but the experiences families share through this registry inform regulators. As more therapies advance in the clinical trial pipeline and interactions between the Duchenne community and regulatory bodies increase, the importance of patient-reported data has never been more critical.
Kristina Elvidge, coordinator of The Duchenne Registry Australia, said “When Australians with Duchenne or Becker muscular dystrophy join the registry, that data will be used to make the voice of the Australian Duchenne Community heard internationally. Researchers will be able to learn more about Duchenne, develop better ways to manage it, determine where the issues are and how to address them. Australian clinical trials can be planned and recruitment to them can happen faster and more equitably.”
New Name, New Features
New features include a more modern, streamlined homepage and once registrants log in to their registry account, they will experience a new, more interactive registry dashboard. A new feature on the dashboard is the medications module which will be critical in this new era of emerging Duchenne therapies.
Participants in The Duchenne Registry Australia will still find the same medical surveys to complete, and the same ability to upload medical records, add healthcare providers, track height and weight, and add family members.
As always, information entered into The Duchenne Registry Australia is kept confidential and secure. Invitae, the company hosting the registry platform, complies with important research and privacy regulations for protecting patient data. However, de-identified data is shared with the community, including registrants, researchers, and clinicians.
The Duchenne Registry Australia, in collaboration with PPMD will continue to improve the user experience over the coming months.
New functionality planned for the Registry includes upgrading the “View Data” feature so registrants can view their data in a graphic-rich format and see how they compare to others in the community. Save Our Sons Duchenne Foundation greatly appreciates the time and effort spent by families inputting and updating their data in the Registry, and a new section on the Registry dashboard (“Your Data at Work”) highlights the impact of this data. Efforts will also be made to make the inputting of data less burdensome to families.
The Duchenne Registry Australia will also make several enhancements to the data collected so that industry partners can improve post-marketing surveillance of their products.
To learn more about The Duchenne Registry Australia, visit our website.