A new way to power discovery in hyperinsulinism research through the HI Global Registry (HIGR)
Hyperinsulinism (HI) is a rare disease, which means researchers and clinicians often have limited information available from the broader HI community to answer important questions about diagnosis, treatment, and long-term outcomes.
Now, participants in the HI Global Registry (HIGR) in the United States can choose to securely connect their Electronic Health Records (EHRs) to their accounts, creating a powerful new resource for understanding HI and improving care and future treatment options.
What is an Electronic Health Record (EHR)? An electronic health record is a digital version of your medical record. It may include information such as diagnoses, medications, laboratory results, procedures, clinic visits, hospitalizations, and other healthcare information documented by your healthcare providers.
Hundreds of people affected by HI have already helped advance the field by sharing their experiences through HIGR surveys, and connecting their EHRs is the next way the community can drive discovery.
Since HIGR was created in 2018, people with HI and their families have helped move the field forward by sharing their experiences through surveys. With the addition of EHR connectivity, HI families in the US can advance research in an entirely new way. By combining patient-reported experiences through HIGR’s original surveys with the clinical information from EHRs, the HI community can help build one of the most comprehensive sources of knowledge about hyperinsulinism.
Each participant who chooses to connect their EHR to HIGR contributes to a larger picture that can improve our understanding of HI and accelerate progress for people living with the disease today and for future generations.
Interested in connecting your electronic health records? Explore the pages below to learn more about connecting your Electronic Health Records to the HI Global Registry:
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Please note that connecting your EHRs is currently available only to participants in the United States at this time.
Why Electronic Health Records Matter
Electronic health records contain valuable clinical information that can help researchers better understand HI across the lifespan.
When participants choose to share EHR data, researchers can study information such as:
- Diagnoses and medical history
- Genetic testing results
- Medications and treatments
- Surgeries and procedures
- Hospitalizations and healthcare utilization
- Long-term health outcomes
When combined across many individuals, these data can reveal patterns that are impossible to see from a single patient experience alone.
Why Your Participation Matters
Rare disease research depends on community participation.
Each person who contributes EHRs helps researchers gain a clearer understanding of hyperinsulinism. When many individuals contribute, those insights become even more powerful.
The information collected through your participation may help:
- Improve clinical care for people living with HI
- Inform future treatment decisions
- Identify unmet needs in the community
- Support the development of new therapies
- Advance scientific understanding of HI
By connecting your electronic health records, you are helping build a future where researchers, clinicians, and families have the knowledge needed to improve outcomes for everyone affected by hyperinsulinism.
Together, we can turn individual experiences into collective knowledge and help drive the next generation of breakthroughs in hyperinsulinism research.
Not yet signed up with HIGR? Explore more about HIGR and request an account today.
