How your data will be used

This page highlights examples of how the information contained within DuchenneConnect Australia will be used. It details some recent studies and clinical trials that have utilised data in the US DuchenneConnect registry. This registry has been collecting information about people with Duchenne worldwide since 2007.

Keep in mind that only de-identified data is shared with researchers. We will never share your name - it is up to you to do that if you are interested in a study.

Recent examples of uses of the US DuchenneConnect registry

Clinical trial of Tadalafil by pharmaceutical company Eli Lilly

DuchenneConnect helped support the implementation of the Phase 3 trial in Duchenne by building general awareness of the trial and reaching out to DuchenneConnect registrants who may potentially qualify for inclusion in the study.

Learning about the genetic changes that cause Duchenne

Researchers gathered information about more than 7000 Duchenne muscular dystrophy mutations from Duchenne registries around the world, including DuchenneConnect. They were then able to calculate how common the different types of mutations causing Duchenne are. This information is invaluable for diagnostics, basic scientific research, trial planning and improved clinical care. The article by researchers at the international neuromuscular network TREAT-NMD, was published in 2015, you can read it here.

Looking at the benefits of steroids and supplements

Dr. Stanley Nelson and his team at UCLA used data collected in DuchenneConnect between 2007 and 2011 for this study - “Online Self-Report Data for Duchenne Muscular Dystrophy Confirms Natural History and Can Be Used to Assess for Therapeutic Benefits”. They found that the data collected in DuchenneConnect is high quality and very similar to the data from natural history studies. This is important because using the Registry data for studies is much easier and less expensive than a traditional clinical trial. Dr. Nelson's team also looked at corticosteroids as well as commonly used supplements to determine which ones, either alone or in combination, may help to prolong ambulation. Read a family-friendly summary of the article here.

If you have questions about these studies or how your data will be used, please contact the DuchenneConnect Australia Coordinators:

Free phone: +61 (03) 8592 6431
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Post: PO Box 230, Coburg, VIC 3058