Join us on Wednesday 13 November for an insightful webinar exploring approaches to accelerate childhood dementia research through the sharing of patient samples and data. Our distinguished panel of experts will discuss the crucial role of patient samples, brain banks, and virtual registries to advance research. 

Background

There is currently no centralised infrastructure for storing and sharing childhood dementia patient data and samples for research. Historically, research has been focused on one childhood dementia disorder at a time, and there have been few avenues for collaboration. 

When families 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. This webinar and panel discussion will focus on working towards solutions that will enable greater collaboration amongst researchers to rapidly advance our understanding and treatment of childhood dementia.

Speakers:

• Dr Kris Elvidge (Chair), is Head of Research at Childhood Dementia Initiative. Kris has more than 20 years experience in the medical research field, over 8 of those in the childhood dementia sphere. Kristina’s expertise lies in gathering evidence and galvanising stakeholders to accelerate the development of much needed treatments. 
• 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 Office for Health and Medical Research to create virtual registries for cell and gene therapies as well as childhood dementia.