The research team from the University of Applied Sciences in Hamburg, Germany invites hyperinsulinism (HI) families to take part in a study titled “Family-Centered Research on Quality of Life in Families with Congenital Hyperinsulinism: Light for double specificity and efficacy without burden: LightCure.” This study aims to develop a patient-reported outcome measure to assess health-related quality of life in patients with congenital HI and their caregivers, as well as shared decision-making materials. Your experience can help improve care for people living with HI.
The goal of the project is to create two helpful tools for people with HI, to make their daily life easier and help them get better care everywhere. The first tool is a questionnaire that lets children, teenagers, and adults with HI – and their families – share how the condition affects their daily life and health. The second tool is a simple manual guide between doctors, patients, and families to work together in making better choices about treatment.
Please click here to learn more about this study.
It includes information on why is it essential, especially for patients, as well as the different phases of the project, and what happens during each of these phases.
In addition to that link, you can also view an informational PDF in English here, with the same material presented in German here.