Last year advocates from Save Our Sons Duchenne Foundation (SOS) approached PPMD about partnering to have a patient report registry in Australia. They were worried because at the time there were no clinical trials in Australia. This needed to change.
They knew DuchenneConnect, PPMD’s patient registry, provided critical data for planning clinical trials and research and recruited for many trials and research studies in the United States. They wanted this powerful tool for their families in Australia. They were committed to making Australia a more feasible place to conduct clinical trials. Having a patient registry was part of the solution. And while DuchenneConnect already allows anyone in the world to join, having an Australian specific portal would give them the advantage they needed to drive more trials and research to Australia.
We felt it was important to partner with SOS because having clinical trials in as many countries as possible helps the whole Duchenne community. We are stronger working together, pushing for more trials, more research, and better care. Partnering with SOS will allow us to make a greater impact than we could alone.
We encourage all families in Australia to register in DuchenneConnect Australia today. You can help bring more research and clinical trials to Australia with your data. By registering in DuchenneConnect Australia you will receive news and updates that are specific to Australia and your local community. Your data, your voice, your story can make a difference to end Duchenne.
And if you are not in Australia, we always welcome you to DuchenneConnect. Anyone with Duchenne, Becker, and women who are carriers are invited to join. With so much promise filling the therapeutic pipeline in our community, registration with DuchenneConnect has never been more important.
Learn More About DuchenneConnect
This short video tells some of the reasons why it’s important for everyone to join DuchenneConnect.