Enrolment | 1 montha | 3 monthsa | 6 monthsa | 12 monthsa | 18 monthsa | 24 monthsa | |
---|---|---|---|---|---|---|---|
Informed consent provided by patient and caregiver (note that caregiver consent is optional for patient study inclusion) | X | ||||||
Retrospective chart review (collection of demographic and medical history data) | X | ||||||
Ongoing clinical data, including clinical outcomes, laboratory measures, medication dose/schedule, resource utilisation, medication adherenceb | X | X | X | X | X | X | |
GETEc | X | X | |||||
CLDQb | X | X | X | ||||
EQ-5D-5L (patient)d | X | X | X | X | X | X | |
EQ-5D-5L Proxy (caregiver)d,e | X | X | X | X | X | X | |
WPAI (patient)c | X | X | X | X | X | X | |
WPAI (caregiver)c | X | X | X | X | X | X |