Work Package 4: Outcome Measures

Digital Outcome Measures & Remote Monitoring

The objective of Work Package 4 is to develop remote monitoring technologies that ALS patients and their caregivers can use to facilitate clinical assessments in their home setting. Data collected by these remote monitoring technologies can then be analysed to provide timely supportive interventions, but also to develop more accurate digital outcome measures of ALS progression. 

Current outcome measures used to quantify ALS progression (e.g., the ALS Functional Rating Scale: ALSFRS-R) are widely used but have known limitations.  Existing measures of motor decline have been integrated with cognitive change and disease staging. However, there remains a recognised need for supplementary quantitative measures in ALS that can enhance the sensitivity of measurement.

The COVID pandemic focused interest on developing strategies and technologies for accurate, remote assessment of ALS motor function and cognition. Remote monitoring can offer an alternative to in-person clinical assessment. In-person clinic visits can create difficulty for patients and caregivers; particularly when they are too unwell to attend or when they must travel long distances.

TRICALS have developed early remote monitoring devices suited to both outcome measurement and remote data collection. The goal of Work Package 4 is to further develop and integrate these technologies to allow ALS patients and caregivers to digitally transfer clinical data to the ICT platform in a user-friendly manner.  This work package will provide ALS patients across Europe with harmonised, innovative and user-friendly forms of clinical assessment that have been externally validated. This will ensure that ALS clinicians will have access to accurate, timely data, facilitating better care with minimal increase in patient burden.

Leader: Dr Dara Meldrum