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New Research Study for Childhood Dementia

Dementia-CONNECT: Connecting the dots in Childhood Dementia disorders

Researchers at The Sydney Children’s Hospital Network (SCHN) are seeking volunteer research participants to help identify commonalities in the symptomology of childhood dementia disorders.

You are eligible to participate in this research if you are an individual or caregiver/guardian of an individual who has been diagnosed with a genetic condition associated with childhood dementia.

What does participating in this research involve?

If you decide to take part you would be invited to complete an online or hard copy survey that comprises of several tools to assess behavioural, cognitive, and developmental characteristics of the individual with childhood dementia. In addition, it asks questions that aim to capture the impact that childhood dementia has on psychosocial outcomes for an individual’s family/caregiver(s). This survey should take no longer than 40 minutes to complete.

To learn more about the research study or to enquire about participating, please contact:

Name: Jason Djafar



Project overview

This project aims to investigate the common symptoms between disorders which cause progressive neurocognitive decline and loss of skills in children. We aim to uncover the size, scale, and impact of these conditions and the psychosocial outcomes for families. We hope that by grouping all these conditions together under the term of childhood dementia will raise more awareness and build momentum behind research for this field. We aim that this project will provide the foundation to guide future research, inform better guidelines for management and increase understanding about diagnosing and tracking the progression of these conditions. With exciting developments in the pipeline for childhood dementia across Australia, having this data will be invaluable for future directions to improve treatment and care.

This study has been approved by the Sydney Children’s Hospital Human Research Ethics Committee (2022/ETH00240)

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