About DuchenneConnect Australia

DuchenneConnect Australia is a patient registry that collects information about Australians with Duchenne and Becker muscular dystrophy and carriers of these conditions. Patients or their caregivers enter their medical information into the registry by completing surveys online. This information is stored in a secure database which is managed according to Australian privacy regulations.

The registry is a program of Save Our Sons and was developed through a collaboration with Parent Project Muscular Dystrophy (PPMD). PPMD is the US Duchenne patient organisation that owns DuchenneConnect – a patient registry that has been collecting data since 2007. AltaVoice is the technology partner that developed the registry platform.

What is a patient registry?

Patient registries are databases that contain information about individuals affected by a particular condition. Most registries focus on the information that is needed to find patients eligible for clinical trials, but they have many other benefits. The information they contain can help clinicians develop care standards and patients can link to the research community and have the opportunity to access information directly relevant for their condition. It should be noted that submitting your data to a registry does not mean that you are obliged to enroll in clinical trials, nor does it guarantee participation in trials; it just may give you the option of taking part.

There are many Duchenne/Becker muscular dystrophy registries around the world. Specific information from each registry is then combined into a global registry managed by TREAT-NMD – an international neuromuscular network. All identifying information (such as name and contact details) is removed from your data before sharing it with other registries and researchers.

What information does DuchenneConnect Australia collect?

The registry collects information about people with Duchenne and Becker muscular dystrophies and carriers of these conditions. This includes:

  • Demographic information such as where you live and your age
  • Genetic diagnosis
  • Cardiac and respiratory function
  • Muscle function
  • Bone health
  • Pain
  • Behaviour and learning

How do I register?

To register, patients (or their parents/carers) create an account by entering a unique username and password, read a page about understanding their participation and then give their consent to take part on an online form. Then registry participants can start answering questions about their symptoms and family history through an online system.

When registering you will be asked to upload medical reports so that information such as the genetic diagnosis can be added to the registry. A curator is employed to make sure the information in the registry is accurate and up-to-date. If you make a mistake, or want to update your information, you can do this at any time by logging into your account.

 

About Save Our Sons Duchenne Foundation

Save Our Sons' mission is to help find a cure for Duchenne by funding research into new treatments, support children and their families living with Duchenne, and raise awareness of their plight.

Clinical trials and preclinical studies in Australia, UK, USA & Canada currently receive research funding from Save Our Sons. Funding programs to improve the quality of life for those in all stages of Duchenne is also a priority. They help families afford equipment such as coughing and breathing machines, swim and mobility scooters and stand-up wheelchairs to give back what Duchenne has taken away.

Furthermore, Save Our Sons distributes new diagnosis packs to help families understand Duchenne upon diagnosis, as well as teacher resource packs to help teachers support those with Duchenne in the school environment.

A comprehensive and effective national patient registry for Duchenne is also a key mission of Save Our Sons, in addition to funding Duchenne-trained nurses in every state of Australia to help children with Duchenne and their families.

For more information about Save Our Sons Duchenne Foundation visit www.saveoursons.org.au

Contact us

Do you have a question? Comment? Feedback?
Contact the DuchenneConnect Australia Coordinators:
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.