The HI Global Registry (HIGR) is the first global patient-powered congenital hyperinsulinism (HI) patient registry. Many years in the making, HIGR launched on October 8, 2018. What follows is an initial report from the HIGR investigators including an introduction to the research project and an early glimpse of data from it. While the first annual report by investigators is not planned until early 2020, the intent of sharing these early findings is to further engage stakeholders in HIGR’s work, better inform the preparation and data analysis of the HIGR annual reporting cycle, and encourage full and robust study participation from all potential study participants. As participation grows, the pool of HI data will become increasingly more significant.
The investigators openly invite comments and questions about the report and welcome ideas for engaging all key HI stakeholders. Broad and robust participation from all members of the HI community will certainly serve to strengthen HIGR. The HIGR team can be contacted at firstname.lastname@example.org.