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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. You can learn more about the benefits of participating in HIGR directly from our HIGR Ambassadors! HIGR Ambassadors are members of the HI community who are passionate about HI advocacy and the impact that HIGR has on HI research.
Who is Eligible to Join?
Did you know you can join HIGR from anywhere in the world? All HIGR surveys are available in eight languages: English, Spanish, Italian, French, Portuguese, German, Korean, and Dutch. We understand how important it is to be able to contribute your experiences with HI in the language you are most comfortable expressing yourself in. The expansion of HIGR surveys into more languages is part of our ongoing commitment to make it easy for everyone to participate in HI research and to create a truly international patient registry for the HI community.
How the HI Global Registry Works
Contributing to hyperinsulinism research has never been simpler!
- Create an account
- Read the consent form and provide consent to participate in the registry
- Add a participant if you are a caregiver completing surveys on behalf of someone with HI
- Complete the surveys – each one is designed to focus on a specific aspect of HI
- Update your survey responses over time. This is so important to help us understand how life with HI changes over time!
By contributing your experiences with HI diagnosis, management, health outcomes, and more to HIGR, you can provide researchers with the data they need to understand HI better. Together, we can work towards a better life for those affected by HI.
Information for Physicians and Researchers
Maximizing the Utilization of the HI Global Registry (MaxHIGR)
MaxHIGR is a physician-reported component of HIGR. HIGR participants can request that their physician complete a survey to collect information from their medical record about the history and management of their HI. Learn more about MaxHIGR.
Requesting HIGR Data for Research Purposes
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 [email protected] to learn more
HIGR Steering Committee
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. Learn more about the members of the steering committee.
Contact us:
HIGR is managed by Congenital Hyperinsulinism International Staff and is made possible through generous donors and sponsors.
