Sharing childhood dementia data and patient samples to accelerate research

Join us for an insightful webinar exploring approaches to accelerate childhood dementia research through the sharing of patient samples and data.

There is currently no system for most families with children with dementia to contribute their child's health data or samples such as blood and tissue to research if they wish to. There is also no centralised way for researchers to share and access these valuable and precious resources.

In addition, when families are able to donate their children’s samples to research, they tell us they don’t want them sitting in one laboratory’s freezer, but shared and used to progress research as widely as possible.

The webinar will begin with 3 presentations from experts about the crucial role of patient samples, brain banks, and virtual registries to advance research, and the challenges to be overcome. Our distinguished panel of experts will then discuss solutions that will enable greater collaboration amongst researchers to rapidly advance our understanding and treatment of childhood dementia.

Speakers:

• Associate Professor Markus J. Hofer has more than 20 years of experience as a clinical neuropathologist and researcher. He is the consultant neuropathologist for the New South Wales Tissue Resource Centre and deputy chair of the brain and body node at the Charles Perkins Centre, University of Sydney. Patient samples have been pivotal to Markus’ research to understand a type of childhood dementia called Aicardi-Goutières syndrome, research which has recently led to the development of a potential therapy.
• Associate Professor Greg Sutherland is research group leader in neuropathology, Director of the NSW Brain Tissue Resource Centre (brain bank) and A/Prof in Neuroscience in the School of Medical Sciences, based in the Charles Perkins Centre, University of Sydney. Greg is spearheading an international virtual rare disease brain bank initiative to enable the sharing of brain tissue for paediatric brain disorder research.
• Dr Laszlo Irinyi, PhD, is a Senior Project Officer at NSW Health Pathology. He works on a project funded by the NSW Office for Health and Medical Research to create virtual registries for cell and gene therapies as well as childhood dementia

Panel discussion
All speakers will will participate in a panel discussion, along with Jo Kershaw, Lived Experience Manager, Childhood Dementia Initiative to give the family perspective and a Government policy representative TBC.

Chaired by Dr Kristina Elvidge, PhD, Head of Research, Childhood Dementia Initiative.

About the Childhood Dementia Webinar Series: The Childhood Dementia webinar series aims to cover a range of topics to enhance engagement and foster collaborations amongst researchers, clinicians, and industry experts to accelerate research and development of treatments for childhood dementia.