Introduction: ACTIVE-MS is a highly innovative patient participation study that will be conducted in 300 people with relapsing MS at risk of progression (EDSS>2.5 and <7.5). The study will be delivered through the MSBase Registry. Background: Approximately 40% of people with MS (pwMS) will develop unrelenting, progressive disability (secondary progressive MS, SPMS). Optimization of existing therapy use, as well as development of new therapies to delay further neurological decline beyond this progression-threshold, requires earlier detection of progression while it is still subclinical. In addition, detecting subtle progression in people with more advanced disease is limited. At present, the diagnosis of progression in MS is made retrospectively, requiring inexorable worsening for more than 6 months without evidence of relapses. Current episodic outpatient assessments consist of brief, once to twice yearly reviews that limit a clinician’s ability to determine if subtle changes indicative of neurological decline have occurred. Therapeutic decisions are therefore reactive to persistent and substantial retrospective changes. Emerging digital and online technologies are now available that allows for multi-dimensional monitoring so that patient-collected data can be combined with traditional, clinic-based assessments and standard paraclinical measurements such as magnetic resonance imaging (MRI)-detected cerebral atrophy. However, optimal use of these continuous data, collected from tech-driven health apps, requires scientific rigor and interpretation to ensure that they add value to the health of pwMS. This study program will implement and integrate self-monitoring using three APP’s in the clinic and the community with the MSBase Registry dataset, targeting pwMS at risk of progression at participating sites. Self-monitoring includes 1) computerized cognitive screening using the MSReactor (www.msreactor.com) tool 2) computerized speech survey and acoustic analysis as a marker of subclinical cerebellar function (REDENLAB survey (www.redenlab.com)) and 3) FLOODLIGHT (www.floodlightopen.com), an open-access self-monitoring APP that assesses upper-limb function, walking, balance, cognition and patient-reported outcomes. The knowledge gained from this innovative, patient-centred program will help define new clinical markers of subclinical progression and detect transition to SPMS. Earlier detection of progression will improve medical decision making, enabling better and proactive disease management at a stage when intervention is still effective, thus leading to improved long-term outcomes.
Multiple sclerosis, progressive MS, biomarkers, computerized testing, apps, cognition, speech, upper limb functionl, physiology, pharmacology, microbiology, anatomy, developmental biology, molecular biology, biochemistry, immunology, human pathology, clinical
Central Clinical School » Neuroscience
Top-up scholarship funding available
Alfred Centre, The Alfred Hospital