PI/Investigator: Pubudu Pathirana, PhD - Deakin University & Associate Professor Louise Corben - Murdoch Children’s Research Institute
Award type: General Research Grant co-funded with FARA US

Grant Title: Predicting Disease Progression in Paediatric Friedreich Ataxia with a Generative AI–Enabled Platform 

Lay Summary: Friedreich ataxia impacts many aspects of daily life including walking, speech, arm function and vision. The common element underscoring this impact is ataxia or incoordination.

Ataxia in FA is measured by clinical rating scales such as the modified Friedreich’s Ataxia Rating Scale (mFARS). In children under the age of 12 years measurement of ataxia may be problematic as the system that controls movement is still maturing, making it difficult to discern by a rating scale, what movements are ataxic and what is related to normal maturation. In addition, children may find it difficult to engage with clinical rating scales, particularly if they require frequent visits to the clinic.

We have developed an interactive and engaging games platform called AIMs_Play that can facilitate frequent, remote (in home) and fun monitoring for children with FA. The AIMs_Play uses movement analysis technology to measure balance and upper limb coordination while children are playing either screen-based games or participating in activities that use dynamic Augmented Reality (AR). The AIMs_Play can be used at home to monitor the progression of FA or response to a treatment.

In this project we plan to evaluate the capacity of the AIMs_Play used at home to monitor the progression of FA. In addition, we plan to use the information about movement available through the AIMs_Play to develop individualized machine learning artificial intelligence models to predict disease progression. 

These models are important both in the design of clinical trials and as sensitive and reliable estimates of FA severity and progression in children with FA.