For Participants

We are actively recruiting patients from the Royal Children's Hospital and working to set up recruitment at the other sites. Currently, the hospitals involved in the NMDB are:

Western Australian patients interested to be involved in research, please contact A/Prof Gina Ravenscroft at the Harry Perkin's Institute of Medical Research.

Note, if you are not treated at one of the above hospitals you can still be involved in this research.

The NMDB collects and stores samples, data (or clinical information) from patients with genetic muscle disease to use for research. If a patient consents to take part, we will collect and store your blood, access archived muscle and skin tissue (if available) as well as data from your medical records for ethically approved research.

Patients who take part consent to their the collection of their data or clinical information, a blood test, and access to skin and/or muscle biopsy taken for diagnostic purposes, if available.

It is unlikely that participant's will benefit directly from taking part in this project however, there may be benefits for future generations with a muscle condition.

Samples and data donated by participants are stored in the biobank, housed at MCRI, to use for ethically approved research.

At present, one project using the biobank focuses on immune cells founds in the blood sample. The immune system plays an important role in helping repair out muscles after they are injured. However, in some instances immune cells can ‘overact’ and cause harm to the body. The research will investigate what cells in the immune system might be ‘overacting.’

The second project uses cells from the blood and turns them into stem cells which can grow in muscle cells. This helps to model different neuromuscular conditions in a dish and test therapies on them.

Every participant's privacy is very important to us and we make every effort to protect it. Any information collected that can identify the participant will be treated as confidential and clinical information will be stored securely at MCRI.

Participation in any research project is voluntary. It is your choice if your child participates in the biobank. You do not have to agree to this.