GenE Compass is an information linker service for parents who have a child with a Developmental and Epileptic Encephalopathy. 

It was developed and piloted by the CoGENeS team. Parents were invited to submit questions about their child’s genetic condition and receive personalised reports in return. 

Some of the questions frequently asked by parents include:

• What are the expected comorbidities for my child’s genetic condition?
• What links are there between a specific syndrome/genetic diagnosis and neurodevelopmental conditions (e.g. ADHD)?
• What is the latest research on our child’s genetic condition?
• Are there any available clinical trials, in Australia or internationally, that we could be a part of?
• How can we stay in the loop with research opportunities and clinical trials?
• What are gene therapies? What does it involve and what benefits are there?
• Is gene therapy available for my child’s genetic condition and will it cure them?
• Are there any support groups for carers who also have a child with the same genetic condition?
• How many other children or adults have my child’s genetic condition?
• What is the life expectancy for people with my child’s genetic condition?
• Does puberty impact how we will need to manage seizures?
• Can any further genetic testing take place if the original test were inconclusive?
• Does the diagnosis of [specific syndrome/genetic diagnosis] provide indication of which medications may be more successful?
• Do people with [specific syndrome/genetic diagnosis] continue to have seizures throughout life?

Content on this page was generated by the GenE Compass project.