Work package 6 will focus on patient-centered outcome measures and the management of quality of life and burden of disease in CHI. There is a lack of standards for measuring quality of life and burden of disease in patients with CHI. Such standards are needed to objectively assess the effects of our light-activated treatment. We will work on the development of patient-reported outcome measures, which can be used to capture patient’s views about their health status, and the impact of CHI on their personal lives and relatives. Additionally, we will expand the worldwide HI Global Registry, built by our partner CHI International, which can be used by CHI researchers for data sharing and therapy outcome assessments.
Activities focused on strengthening HIGR include expanding the registry to additional languages, developing new and improved surveys, adding new real-world data streams, conducting diligent data curation protocols, performing a robust data security and compliance review, integrating HIGR data with other data streams, incorporating HIGR into a mobile application for HI management, and more. Furthermore, we will create and implement a shared decision-making tool to improve decision-making in CHI management for patients/families and their healthcare providers. This tool will be based on evidence-based data from the CHI registry.
Quick links to other Work Packages: 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9