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Investigating the factors that determine typical and atypical brain development – Research Buddy

About the project and the involvement opportunity

The epigenome is like a set of switches that control the activity of genes during development. Sometimes, these switches can be disrupted in certain diseases. In the human brain, the activity of genes changes as we grow up, until adulthood. This means we also need to understand these changes when we study neurodevelopmental disorders. Our research aims to understand how the switches (epigenome) and gene activity are different in people with developmental disorders like Rett syndrome, schizophrenia, and ADHD. By studying these differences, we hope to better understand how neurodevelopmental disorders start and progress, and ultimately identify new treatments to help those affected.

About the position

We are seeking a Consumer Representative with lived experience of a neurodevelopmental disorder, such as Rett syndrome, schizophrenia, or ADHD, and/or caregivers of individuals with these disorders. This representative will collaborate with our researchers to ensure that the project is informed by the perspective of those with lived experience. By working together, we can ensure that the consumer’s voice is heard and that the project accurately reflects the needs and experiences of those it aims to help.

What am I expected to do?

The Consumer Representative will play a vital role in guiding and supporting our research team. They will review project documents, help us create explanations of our projects, provide ideas and feedback on future research priorities, and assist us in sharing our findings with the wider community. Their input and expertise will ensure that our work remains grounded in the needs and perspectives of individuals and families affected by neurodevelopmental disorders like Rett syndrome, schizophrenia, and ADHD.

What skills or experience do I need?

Experience living with Rett syndrome, schizophrenia, or ADHD. Carer or family member of a person with Rett syndrome, schizophrenia, or ADHD.

How long am I expected to be involved?

As a Consumer Representative, we would like to involve you in an initial meeting lasting about 2 hours to discuss the project and your involvement and to review our proposed research plan. If the project is funded, we would appreciate your ongoing involvement for the duration of the project, which is expected to be between one to two year(s). We understand that everyone’s availability is different, and we will work with you to arrange meetings that are convenient for both you and the research team.

Where will meetings be held?

We will hold meetings at a location that is convenient for both you and the research team, or online if that is more suitable. We are mindful of privacy and confidentiality concerns, particularly when discussing health-related matters, and will ensure that appropriate measures are in place to protect your personal information.

What support is offered?

We acknowledge your lived experience expertise and will pay an honorarium of $37.50 per hour of your time dedicated to this project. Training and support for you is offered by the Consumer and Community Involvement Program.

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