Targeted Project 5

Using extant data held by TRICALS partners, Targeted Project 5 addresses Characterising the experience of patients and informal caregivers – psychological distress, quality of life illness burden, caregiver wellbeing (co-morbidities), type of care provided, hours of care provided engagement with health care services, use of aids and
appliances and medication use across the disease in Europe. Health economic analysis of cost of illness, the personal and societal impact of disease, formal and informal care, and correlated with ALSFRSR subscales and Kings Staging system

Prospective development and validation of Patient Reported Outcome Measures (PROMS) in conjunction with objective clinical measures (WP2 and WP3) Use of participatory research approaches involving patients and caregivers to determine barriers for effective use and future development of eHealth technologies. This will drive
development of information-transfer portals to integrate patient and caregiver perspectives with clinical measurements.

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