Congenital Hyperinsulinism International

The HI Global Registry



Are you ready to help bring HI research to the “Max?” You can participate in MaxHIGR, a physician-reported addition to the HI Global Registry (HIGR)! Thanks to HIGR, the experience of living with congenital hyperinsulinism (HI), from the people who live with it, is included in medical research for new treatments and cures.

Now, you can maximize your participation in HIGR through MaxHIGR. MaxHIGR, an international collaboration between HI physicians and CHI, will grow and expand the research possibilities unlocked through HIGR while enhancing the impact of the registry’s 13 patient and caregiver surveys. MaxHIGR adds physician-reported information through the MaxHIGR form. Your doctor can complete the form that will provide key information about your HI from the medical perspective. The form will then be uploaded into the secure registry platform.

Together, HIGR and MaxHIGR will lead to faster diagnostics, better quality of life, better treatments, and maybe even a cure. Learn more about MaxHIGR and the benefits of participating here.

If you are the parent of a child with hyperinsulinism, you can participate in their behalf. If you are an adult with hyperinsulinism, you can participate for yourself.

About the HI Global Registry

HI Global Registry

CHI has developed a patient-reported registry called the HI Global Registry (HIGR) to improve the understanding of HI, and advance research for better treatments and patient care. The registry consists of thirteen surveys made up of questions about the patient’s experience with HI over their lifetime. Additionally, MaxHIGR adds physicians’ information to increase HI research opportunities by complementing patient-reported responses in the registry.

Visit the Registry Website

Patients and their legally authorized representatives can participate in HIGR by registering online and consenting to participate in the study. After consenting, participants are directed to take surveys where they will enter their information, which can then be viewed in visual graphs that integrate data from other patients. When registering, they can also select in the contact preferences section to learn more about clinical trials, and be notified by CHI when they meet eligibility criteria for a study. Participants can join the registry from anywhere in the world, and they are able to choose to withdraw at any time.

The project is sponsored by Congenital Hyperinsulinism International and governed by a group of internationally recognized HI patient advocates and experts, known as the HI Global Registry Steering Committee.

The HI Global Registry is hosted on the IAMRARE™ Platform which was developed and is owned by the National Organization for Rare Disorders (NORD). The IAMRARE™ Platform was created with input from patient, caregiver, and government stakeholders to ensure a safe and user-friendly system for study participation.

The 2022 HIGR Annual Report is here!

2022 CHI Annual Report

CHI and the HI Global Registry (HIGR) team invite you to read the 2022 HIGR Annual Report! The report provides insights into what it is like to have congenital hyperinsulinism (HI) reported by the people who live with it. HIGR is the first global patient-powered congenital hyperinsulinism patient registry and consists of a series of thirteen surveys made up of questions related to a patient’s HI experience over their lifetime. The report builds on previous annual reports that have been shared since 2019.

In 2022, the CHI team published 3 peer-reviewed articles supported by research from HIGR. You can read them by clicking the links below:

Global Registries in Congenital Hyperinsulinism

Congenital Hyperinsulinism International: A Community Focused on Improving the Lives of People Living With Congenital Hyperinsulinism

Congenital hyperinsulinism in infancy and childhood: challenges, unmet needs and the perspective of patients and families

If you have any questions or feedback about the report or HIGR, please contact:

2023 HIGR Sponsors