Organisation: Murdoch Children’s Research Institute 

Contact Person: Phoebe Macleod

Contact Email Address: phoebe.macleod@mcri.edu.au

Abstract

Cerebral Palsy (CP) is a complex life-long disability that primarily affects movement and posture, but may be further complicated by medical, cognitive, communication, emotional, sleep, sensory and pain issues. These multi-faceted health needs present a huge challenge for patients and their families, coordinating with multiple medical specialists and allied health professionals, filling prescriptions, x-rays at regular intervals, paperwork for benefits and equipment, home help and respite services. This proposal seeks to build the ‘Manage my CP’ platform: the first digital tool to empower, support and educate families in best management and care of their child’s CP. It will contain modules covering appointments, medications, rehabilitation plans, gait video footage, X-ray images, mental health support material and navigation through available funding, community services, new research findings and clinical trials. It is expected to deliver best practice care via streamlined delivery of healthcare, standardised information, improved engagement with families and enhanced compliance with treatment plans. With minor changes, it may be transferrable to other chronic and complex disease areas.