Data Collection and Prospective Datasets Sample Clauses

Data Collection and Prospective Datasets. During the four pilots, prospective data will be collected through a variety of sources depending on the type of data and the pilot design. The different sources include validated questionnaires, wearables, mobile app, and questions through web-based platforms. 3.1.2.1 Questionnaires Validated questionnaires will be used to capture the QoL issues in which a validated questionnaire is available. The use of validated questionnaires is essential to minimise the risk for measurement bias, facilitate the open call process, and enable the generalisability of ASCAPE-based predictions and interventions. In some QoL issues, different validated questionnaires among pilots will be used to capture the same QoL issue. Based on current evidence and clinical expertise within the ASCAPE consortium, the presence or absence of each QoL issue will be defined within each validated questionnaire and the definitions will be aligned. Patients will be asked to answer the validated questionnaires chosen for each pilot study every three months. There are two exceptions with regards to the use of validated questionnaires among the pilots: the Barcelona and the CareAcross pilot. The Barcelona pilot, in addition to validated questionnaires, will be in a position to capture data on patient QoL issues also through the Xemio app which patients will be encouraged to use to obtain information about any discomforts or other symptoms/side-effects they are experiencing offering the opportunity to collect data about QoL issues at the point when they are most pertinent to the patient in addition to the periodic self-reporting based on validated questionnaires. The Xemio app data collection interface will be based on simple questions the patient will not find it inconvenient and tiresome to answer. The CareAcross questionnaires are also designed to be shorter and simpler than the validated questionnaires used in other pilots. This reflects an understanding that patients voluntary supplying data to a remote online platform, the CareAcross website, are far more unlikely to do so if this is tiresome and time-consuming. CareAcross’s data collection is tied with the supply of content, an approach which will also be taken during ASCAPE. Within these two exceptions (Barcelona Xemio app, CareAcross website), the simple questions will be aligned to the validated questionnaires used by the other pilots.
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