Addressing the technology needs of people living with cerebrospinal fluid (CSF) leak

Lead: Dr Bao Nguyen, Senior Research Fellow, Department of Optometry and Vision Sciences, Faculty of Medicine, Dentistry and Health Sciences

Spinal CSF (cerebrospinal fluid) leaks cause intracranial hypotension and a wide range of neurological symptoms that worsen when upright, leaving many people bed-bound and severely disabled. Over 60% of those affected report moderate to complete disability. Diagnosis is notoriously difficult, symptoms are non-specific, and patients frequently go undiagnosed or misdiagnosed for years, often reporting that they are simply not believed. Even when a leak is found and treated, symptoms can persist. For those who can only be upright for minutes or hours a day, basic activities like attending healthcare appointments, working, or fulfilling caring responsibilities become extremely difficult to manage.

Drawing on ongoing consumer engagement with people living with CSF leak, the team will develop and pilot-test a two-part technology solution: a daily symptom tracker app to help users record and communicate their symptoms more effectively within the health system, and a wearable device that measures time spent upright to help individuals plan daily and social activities. Development will be guided by a consumer advisory group with lived experience of CSF leak, and pilot testing will evaluate design, usability, and user experience across both rural and metropolitan communities.

The aim is to deliver a custom technology solution that directly addresses the practical, day-to-day challenges of living with CSF leak and to generate preliminary evidence to support future technology development and scaling for the broader CSF leak community.