Work Package 7 is focused on raising awareness of the need for timely recognition and management of hypoglycemia in babies born with congenital hyperinsulinism. The goal of this emphasis on awareness is to end preventable neurodevelopmental conditions and death from congenital hyperinsulinism.
As part of this work, Congenital Hyperinsulinism International (CHI International) has developed and will expand on a campaign called the “Glucose as a Vital Sign.” This is an awareness campaign that has text and graphics, aimed at the general public and medical professionals. The campaign highlights that blood glucose should be considered as a vital sign, and that abnormal blood glucose levels in newborns is an emergency that needs to be addressed to uncover and manage congenital hyperinsulinism from the very beginning. The awareness campaign includes patient stories and a strong social media presence.
The Work Package is also producing a documentary film to support this campaign. The film focuses on the experiences of three families, all of whom have children born with congenital hyperinsulinism. In this moving film, all three families have been greatly affected by the diagnostic process and the management this condition requires. The film also explores the role of timely diagnosis and excellent care right from the beginning. It shows how what happens in the first hours of life can be determinative for a lifetime.
Work Package 7 is also focused on educating medical professionals on the condition, its management, and the role of timely diagnosis to prevent brain damage. It will share LightCure research data and clinical protocols openly. Dissemination of information to medical professionals, the patient community, and general public on the LightCure project and clinical trials in all its phases is also part of this work package.
The Dissemination, Engagement, and Communication Plan includes publishing research, presenting findings at conferences, exhibiting at meetings, a second documentary film on the LightCure Project, and engaging with policymakers and payers/insurers.
Work Package 7 is also responsible for the establishment of a patient advisory board for guidance on clinical trial design, patient reported outcomes, and to ensure their perspective on the entire project. The LightCure Patient Advisory Board is already an integral part of the project.
Quick links to other Work Packages: 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9