Report on global research

1 August 2022

A report commissioned by Childhood Dementia Initiative has identified gaps and opportunities in global childhood dementia research.

Authored by Research Australia, Childhood Dementia Global Landscape Analysis provides an overview of clinical trials undertaken for 70+ genetic disorders known to cause childhood dementia. It also identified individuals and organisations engaged in research. 

This report supports Childhood Dementia Initiative’s work to transform the way childhood dementia research is undertaken and funded. The organisation is driving greater collaboration on research projects to accelerate outcomes for as many children with dementia as possible.

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Historically, there’s been a siloed approach, with research typically focused on a single genetic disorder at a time. However, there are commonalities shared across disorders as well as work undertaken by researchers that is being duplicated again and again. There are immense opportunities to create economies of scale by sharing resources and extending research from one disorder to multiple disorders,” says Dr Kris Elvidge, Head of Research at Childhood Dementia Initiative. 

The report identified:

  • There were no clinical trials or clinical study research articles identified for about a third of the childhood dementia disorders
  • Australia's number of clinical trials per capita is on a par with other similar countries. However, there are only 14 clinical trials currently active in Australia for childhood dementia covering just 9 of the 70+ childhood dementia disorders.
  • Institutions where clinical research programs are well established and the lead researchers at these institutions
  • The major pharmaceutical companies active in the childhood dementia field

 “We have more analysis of the data that we’ll be sharing soon,” says Dr Elvidge.

"While the analysis has identified some significant gaps and inequity in clinical trial activity between disorders, it gives us encouraging news too. There is momentum and drive to find solutions. We now have a better sense of the companies with an interest in childhood dementia and more names of researchers and clinicians who are conducting childhood dementia trials globally, which will allow us to engage with the leaders in childhood dementia research strategically,” says Dr Elvidge.