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What is the HI Global Registry?
The HI Global Registry (HIGR) is the only patient-powered hyperinsulinism (HI) registry. A patient registry is an organized way of collecting information about a group of individuals with the same or related diseases. The HI Global Registry contains a series of surveys designed to capture information about various aspects of being diagnosed with and living with hyperinsulinism.
HIGR launched in 2018 and consists of thirteen surveys that record various aspects of the patient and caregiver experience with HI over their lifetime. Additionally, MaxHIGR provides complementary data from the physician perspective. These insights are critical to the entire HI community and become even more meaningful as more individuals participate. Survey responses are made anonymous/deidentified and shared with researchers to improve the overall understanding of HI to help advance new treatments, to improve patient care, and ultimately, to bring the lived experience of HI to the forefront of research.
Since its launch in 2018, data from the HI Global Registry has been quoted in or informed:
- The International Hyperinsulinism Clinical Care Guidelines
- Clinical Trial protocol design and inclusion/ exclusion criteria for studies
- Four peer-reviewed journal articles
- Five medical conference poster presentations