Horizon_MONALISA

The MONALISA app is an integral part of the MONALISA study, an innovative research project that aims to improve the monitoring and treatment of high-risk neuroblastoma in children. Designed specifically for the caregivers of participating children, the app offers a range of features to accompany them throughout the study. • My Questionnaire: Enables caregivers to complete questionnaires. • My Results: Displays an overview of the monthly questionnaire results. • Study Information: Provides an overview of the MONALISA study. • FAQ: Answers frequently asked questions about the app. The My Questionnaire section serves as the core feature, allowing caregivers to fill in questionnaires about their child and themselves on a regular basis. This helps to track their wellbeing, quality of life and overall experience during the study. Caregivers receive a personal credential document from the healthcare team with their username, password, and detailed instructions for downloading the app. After receiving this document, they can quickly set up the app. Caregiver Roles in the App: • If there are two caregivers, both can download the app and fill in questionnaires. One of them will be the Primary Reporter, answering questions about both themselves and the child. The other will be the Second Reporter, answering questions about themselves only. It is very important to decide at the beginning of the study who will be the Primary Reporter and who will be the Second Reporter. Once this has been decided, it should not be changed. • If there is one caregiver, they will be the Primary Reporter. They will answer questions about both themselves and the child. The MONALISA app is designed to be intuitive and user-friendly, making it simple for caregivers to navigate its features and complete their questionnaires. Push notifications remind caregivers when new questionnaires are available, helping them stay engaged and up to date. Data Privacy and Security Privacy and security are top priorities. All information submitted to the app will be handled with the utmost care and will only be accessible to the healthcare team involved in the study. This ensures that caregivers can confidently share valuable insights, knowing that their information is secure. Support If caregivers have questions or encounter any issues with the app, the healthcare team at the hospital is available to provide support and assistance. We greatly value the time, effort, and insight that caregivers contribute throughout the MONALISA study. By taking part in this research, caregivers are playing an essential role in improving our understanding of high-risk neuroblastoma. The information gathered will help us develop better ways to support patients and families affected by neuroblastoma in the future. The MONALISA team