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Childhood dementia

The many neurodegenerative conditions that cause childhood dementia are individually rare. Collectively, however, they affect around 700,000(1) children and young people worldwide. You can access a complete list of the conditions included under this term. Detailed data on childhood dementia conditions is available via the Childhood Dementia Knowledgebase.

Childhood Dementia Initiative drives accelerated action for all of these conditions. We work with researchers across the world. Get involved and stay up to date on this growing field by joining the Childhood Dementia Research Alliance.  

Join the Alliance

Latest news, posters & publications 

How we can help

Childhood Dementia Initiative can provide:

  • Data on childhood dementia and its impact
  • Expert comment and insight on the design of your research projects
  • Access to family input and insights
  • Opportunities for collaboration and knowledge sharing with other researchers and clinicians through our Research and Health Professionals Alliances, webinars and the Childhood Dementia Symposium
  • Communication of research outcomes to national and international stakeholder audiences
  • Advocacy for funding and connections to potential funders 
  • Input on the translation of any identified treatments into patient benefit

We welcome genuine research partnerships. If you are applying for funding we’d love to hear your ideas. You can reach us at: hello@childhooddementia.org

Learn more:

How we accelerate research

“By working under the umbrella of childhood dementia there is tremendous potential to achieve economies of scope and scale and translate research into therapeutics and diagnostics. It is such an innovation.”

- Tiffany Boughtwood, Managing Director of Australian Genomics & member of the Childhood Dementia Initiative Scientific and Medical Advisory Committee

Latest news, posters and publications

WATCH NOW: expert panel discussion 

5 Dec 2023 webinar on new research, The collective burden of childhood dementia

Essential data on childhood dementia

Research published in Brain, The collective burden of childhood dementia: a scoping review 

Webinar recording: Brain Organoid Models for Childhood Dementia

On the applications of brain organoids.

Webinar recording: Accessing Emerging Treatments for Childhood Dementia

Watch the webinar recording and hear from a panel of guest speakers.

Poster: Alzheimer's Association International Conference

Presented at the AAIC in July 2023.

Poster: International Congress of Genetics

Poster presented at the International Congress of Genetics (ICG) in July 2023.

Childhood Dementia Symposium Report

Covers the outcomes and feedback on the 2023 Symposium.

Research funding announced

The recipients of 2.7M research funding have been announced.

A new approach to research

Typically, research into childhood dementia conditions has been siloed and focused on single disorders. Yet the shared presentation and impacts of these conditions offer a powerful opportunity. Research that investigates multiple childhood dementias, or mechanisms common to multiple disorders, can enable to date untapped economies of scale and greater benefits for children. 

A growing body of literature suggests that common disease mechanisms exist between adult and childhood-onset dementias. Cross pollination and collaboration between childhood and adult-onset dementia research and clinical care systems will lead to advancement in therapeutic development and improvements in care and quality of life for affected families.

Additionally, sharing data, technology, and infrastructure, including patient registries and biobanking, can deliver significant efficiencies. Shared and streamlined platform technologies to deliver high-cost gene therapy to children with dementia can also deliver faster, urgently needed results. 

“There is no better time than now for the Childhood Dementia Initiative to be in operation! Finally, we have a coalescence of brilliant advocates who provide a united voice for children and their families in desperate need of support and hope. Moreover, advances in the capacity to make a diagnosis earlier in the course of the disease, and the development of innovative novel genetic and other therapies, now make us really optimistic about being able to make a significant impact on the lives of children affected by these devastating disorders.”

- John Christodoulou, Professor and Chair of Genomic Medicine at the Murdoch Children's Research Institute and the University of Melbourne.

Join the Childhood Dementia Research Alliance

Contact us

If you would like more information or would like to speak with us directly, please get in touch with our Head of Research, Dr Kris Elvidge: kris@childhooddementia.org

1. Childhood Dementia Initiative. 2020. Childhood Dementia: the case for urgent action. https://www.childhooddementia.org/whitepaper