Maximising the Utilisation of the Hyperinsulinism Global Registry (HIGR) [Max HIGR]
Awardee: Indraneel Banerjee
Institution: University of Manchester, Royal Manchester Children's Hospital
Award Amount: $73,190
Funding Period: February 1, 2021 - January 31, 2022
Summary:
The HI Global Registry (HIGR) is a unique rare disease patient registry developed by Congenital Hyperinsulinism International. This international online registry that gathers important information on different types and treatments for low sugars due to hyperinsulinism. The completion of HIGR relies on parents and families uploading their child's required details. Our proposed study "Maximizing the Utility of HIGR" (MaxHIGR) aims to build on the opportunity to add medical grade information to existing parent reported HIGR information, thereby joining up clinical and parent perspectives in the search towards better understanding and improved treatment for HI. MaxHIGR will lay the basis for HIGR to evolve into a registry that will tell us about the natural history of disease, which treatments are better and have less side effects and how we can improve the quality of life of children and families living with HI.
Final Report Summary:
MaxHIGR has brought international co laborators to agree on a common data colection to replicate natural history of Congenital Hyperinsulinism. MaxHIGR required close co laboration across time zones around the world, while adapting to a a common set of rules for data entry. The form is now currently being integrated into an online tool for use in a pilot study. This study has been delayed to accommodate in person patient-clinician consultations that had been set back due to the pandemic.