None listed
Conditions
Brief summary
This study is a pilot, mixed-methods evaluation of the Mia AI platform for Late-Onset Pompe Disease (LOPD). It aims to assess the usability, acceptability, and perceived clinical utility of an AI-driven decision-support system that assists with patient identification, biomarker monitoring, and multidisciplinary care coordination. Approximately 30 participants will be recruited, including patients with LOPD, carers, clinicians, allied health professionals, and researchers. Participants will complete one 60–90 minute session involving interaction with the Mia AI system, a System Usability Scale questionnaire, and a semi-structured interview exploring their experiences and views on AI in Pompe disease care. In parallel, the research team will independently evaluate the technical performance of the system using established AI assessment frameworks.
Interventions
Description of intervention or exposure: The intervention under investigation is the Mia AI clinical decision-support platform for Pompe disease. The system is designed to assist with patient identification, disease monitoring, and multidisciplinary care coordination using artificial intelligence tools, including large language models, retrieval augmented generation, natural language processing (NLP), machine learning models, and biomarker analytics.
Participants will be provided with:
Access t
Description of intervention or exposure: The intervention under investigation is the Mia AI clinical decision-support platform for Pompe disease. The system is designed to assist with patient identification, disease monitoring, and multidisciplinary care coordination using artificial intelligence tools, including large language models, retrieval augmented generation, natural language processing (NLP), machine learning models, and biomarker analytics. Participants will be provided with: Access to a demonstration version of the Mia AI platform (secure web-based interface or local deployment) Participant Information Sheet and informed consent documentation System Usability Scale (SUS) questionnaire Semi-structured interview guide (adapted from established automation and AI assessment methodologies) Participants will only be able to ask questions to the AI chatbot relevant to their stratification, ie patient/carer, nurse, primary care physician, consultant/researcher. Access to individual patient details such as care plans and biomarkers, will not be available. Participants will be able to explore the platform freely but will be limited to their stratification as explained earlier. Participants will not have to complete the same study activities, they will be able to ask the chatbot as many questions as time permits. Participants may ask for assistance while using the platform if needed. Duration: One 2 hour session Location/setting: 10 The Esplanade, Perth, Western Australia, 6000; or Perth Children's Hospital; or online
Sponsors
David Cavanagh, Integrated Energy Pty Ltd
Study design
Allocation
Non-randomised trial
Primary purpose
Diagnosis
Eligibility
Sex/Gender
All
Healthy volunteers
No
Inclusion criteria
Any one at any age with late onset pompe disease, or the associated commmunity of family, carers, researchers, clinicians, or treatment providers
Exclusion criteria
None
Outcome results
None listed