The Research Journey

The figure below gives a suggested pathway to finding out about research relating to your child's condition:

1. Join a support group:

Support groups are often aware of new research.
Groups such as Genetic Epilepsy Team Australia (GETA), or one that is specific to your child's genetic diagnosis may be helpful.

2. Learn more about the upcoming natural history study:

A natural history study for all children and adults with the combination of seizures and impacts on learning or development (the genetic or suspected genetic epilepsies) will be starting across Australia soon.
This is part of the Developmental and Epileptic Encephalopathy Research (DEER) program and has been funded by the National Health and Medical Research Council (NHMRC).

3. Register to be alerted for relevant clinical trials:

To find clinical trials that are running in Australia, search the Australian Clinical Trials Network website. You can set alerts so you will be sent an email when any new trials are opening. For more information about setting an alert, watch the video here.
To find clinical trials that are running overseas, search the ClinicalTrials.gov website.
If you are interested in learning more about current advocacy to bring cell and gene therapies to Australia for rare diseases, you may like to read this report from evohealth, a health consulting firm.

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Content on this page was generated via the GenE Compass project. The following article provides more information about the project:

Robertson EG, Kelada L, Best S, Goranitis, I, Grainger N, Le Marne F, Pierce K, Nevin, SM, Macintosh R, Beavis E, Sachdev R, Bye A, Palmer EE. (2022). Acceptability and feasibility of an online information linker service for caregivers who have a child with genetic epilepsy: a mixed-method pilot study protocol. BMJ Open, 12:e063249. https://doi.org/10.1136/bmjopen-2022-063249