For patients with chronic diseases such as neurodegenerative disorders (NDD) and immune-mediated inflammatory diseases (IMID), a key attribute for any successful therapeutic intervention is its ability to improve the patients’ activities of daily living (ADL) and health-related quality of life (HRQoL). Current evaluations of ADL and HRQoL rely mainly on subjective reports, typically using standardized questionnaires provided by patients every few months. The approach is often prone to recall bias, reliability issues and poor sensitivity to change. IDEA-FAST wants to change this!
The goal is to identify, profile and validate digital solutions based on mobile or residential technology for remote assessment of fatigue and sleep disturbances that could effectively be used as digital endpoints in assessments for RA, SLE, PSS, IBD, PD, HD and beyond. Identifying digital endpoints for fatigue and sleep disturbances that can be used in patients’ usual living environment will also enable the meaningful evaluation of impacts of these symptoms on ADL/HRQoL. The ecological validity of these digital endpoints will be tested using a large longitudinal cohort of four IMID and two NDD.