The analysis identified for every child diagnosed, there are 24 times more trials recruiting children with cancer globally, than children with dementia. This is consistent with the historic lack of clinical trials for patients with childhood dementia. Over the past 23 years, 21-fold more trials were initiated per child with cancer compared to childhood dementia (Childhood Dementia Initiative 2024).

This is despite the significant disparity in survival rates. Sadly, 0% of children with dementia will survive, while over 80% of children with cancer in high income countries survive today. There are no cures for childhood dementia and to date, there have been no notable improvements in survival rates for affected children.

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The report also found: 

• Globally, clinical trial activity for childhood dementia slowed in the past 5 years.
• In addition to fewer trials being initiated, evidence was found of multiple trials halting or failing to initiate at a late stage due to regulatory and/or commercial barriers.
• In Australia the disparity was even greater:
  • Per patient there were 43 times more clinical trials recruiting children with cancer than children with dementia.
  • Of 54 clinical trials recruiting patients globally, only 2 of these trials were listed as recruiting in Australia, and no new trials started in Australia in 2023. 

“We celebrate the progress made for children with cancer and point to it as an example of the benefits of concerted research efforts,” Dr Kris Elvidge, Head of Research at Childhood Dementia Initiative. “Just like childhood dementia, childhood cancer comprises a range of different conditions. It wasn’t long ago that most children with cancer weren’t expected to survive. Medical research transformed outcomes for that cohort. It’s time that we harness advances in medical research to finally improve life and survival for children suffering with dementia too.”

An additional special report on research funding in Australia, Australian Childhood Dementia Research Funding Report 2024, also found concerning inequity. Over the period 2017 to 2023, childhood dementia received 4.6 times less government research funding than childhood cancer per patient.

“I think there’s a moral imperative here to increase research that we can’t overlook. Children with dementia are suffering. Their families are watching them slowly die while living with progressive cognitive and physical losses, and increasing levels of confusion, pain and distress. Funding for coordinated, collaborative and efficient research is urgently needed to improve life for as many children as possible,” says Megan Maack, CEO of Childhood Dementia Initiative.

Childhood dementia

Childhood dementia is caused by over 100 neurodegenerative genetic disorders. It is life-limiting (terminal) for all affected children. There are no cures. It is so severe that half of all children die before the age of 10. An estimated 70% don’t reach their 18th birthdays. All will die prematurely. (Elvidge et al., 2023).

There are as many babies born in Australia with a condition that causes childhood dementia as better-known (and researched) conditions such as cystic fibrosis. And, sadly, as many people in Australia die each year from childhood dementia as childhood cancer. (Elvidge et al., 2023).

References:

Childhood Dementia Initiative (2024). Childhood Dementia Global Clinical Trial Landscape Analysis. www.childhooddementia.org/getasset/LZPRVX

Childhood Dementia Initiative (2024). Australian Childhood Dementia Research Funding Report 2024. www.childhooddementia.org/getasset/2WX39O

Elvidge KL, Christodoulou J, Farrar MA, Tilden D, Maack M, Valeri M, Ellis M, Smith NJC; Childhood Dementia Working Group. The collective burden of childhood dementia: a scoping review. Brain. 2023 Jul 20:awad242. doi: 10.1093/brain/awad242. Epub ahead of print. PMID: 37471493. https://doi.org/10.1093/brain/awad242