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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
Why is the HI Global Registry Important?
As a rare disease, there is so much we still don’t understand about hyperinsulinism. There are many gaps and unmet needs in HI diagnosis, management, and long-term outcomes, including:
- Lack of awareness of HI leading to delayed diagnosis and poor neurological outcomes
- Ineffective medications with many side-effects
- Complicated daily care routines and feeding challenges
- Surgical treatment often resolves HI, but causes diabetes
- Poor access to medications in many parts of the world
- Difficulties accessing HI medical experts
- There is no cure for hyperinsulinism
By collecting more information on hyperinsulinism from the people who are experiencing the challenges daily, HIGR can help to address these gaps.
Who is Eligible to Join?
- Adults with HI
- Parents/caregivers of people with HI
- Adults with resolved HI or transitioned to diabetes
Join the HI Global Registry
Are you a patient or caregiver who has lived with HI? Click below to find out more on how you can contribute to HI research.
Are you a doctor that cares for patients with HI? Medical professionals can find our dedicated physician page at MaxHIGR
Learn more at:
For Researchers
Researchers can request access to deidentified data from HIGR to integrate into their own research. Researchers have incorporated HIGR data reports into their peer-reviewed publications and medical conference posters and presentations. Contact info@higlobalregistry.org to learn more
HIGR is governed by the HIGR Steering Committee, which is a group of over 20 internationally recognized HI advocates, clinicians, and researchers representing 6 countries across the world. You can learn more about the members of the steering committee here.
Thank you for your interest in the HI Global Registry. Any further questions? Contact us:
HIGR is managed by Congenital Hyperinsulinism International Staff and is made possible through generous donors and sponsors.
