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Monitoring Disease Activity in Multiple Sclerosis
Published in Richard K. Burt, Alberto M. Marmont, Stem Cell Therapy for Autoimmune Disease, 2019
The use of defined measures of disease relapses or disability progression became increasingly important as large scale studies were done to assess the efficacy of new therapies. Instruments used for clinical outcome measures must be assessed for reliability, validity and sensitivity. One must also consider their clinical usefulness including time to administer the test, ease of use, patient tolerability and training requirements. Interrater and intrarater reliability is especially important in MS clinical trials, as change in neurologic examination becomes the primary end-point of these studies. It is especially important that the instrument not falsely contribute to measures of disease progression or improvement. The instrument must detect small but significant changes.1
Involving older adults in design research
Published in Sara J. Czaja, Walter R. Boot, Neil Charness, Wendy A. Rogers, Designing for Older Adults, 2019
Sara J. Czaja, Walter R. Boot, Neil Charness, Wendy A. Rogers
Measures serve different purposes and may be categorized in several ways. For example, in clinical trials a distinction is typically made between primary outcome measures and secondary outcome measures. The primary outcome measure is the measure, among the measures that are being examined in the trial, that an investigator considers to be the most important with respect to providing information about the research question (e.g., the effectiveness of an intervention). Secondary outcomes yield additional relevant information, such as participant ratings of an intervention. Most studies include a variety of measures.
Quality medical data management within an open AI architecture – cancer patients case
Published in Connection Science, 2023
Mirjana Ivanovic, Serge Autexier, Miltiadis Kokkonidis, Johannes Rust
However, apart from care of developing services that can help cancer survivors in improving their QoL aspects, it is important to consider cancer survivors personal experiences. For this purpose, numerous questionnaires/instruments to measure cancer patient’s individual views of his/her health status are usually used. Two widely used measures are PROMs (Patient Reported Outcome Measures) and PREMs (Patient Reported Experience Measures). From that point of view, it is valuable to acquire early reliable predictors and QoL aspects over time to improve treatment decisions and especially follow-up strategies. Medical systems should support the utilisation of Holistic Health Records, powerful AI/ML approaches that facilitate the integration of QoL instruments (like PROMs and PREMs), implementation of a user-centred communication interface and personalised support. All these comprehensive instruments are also incorporated in ASCAPE data management subsystem using emergent technologies nowadays.