Maximizing the Utilization of the HI Global Registry (MaxHIGR), is a project that grows and expands the HI Global Registry (HIGR). HIGR is the only global congenital hyperinsulinism (HI) patient-reported registry, an online system that collects information from individuals with HI and caregivers to capture their experiences living with HI across their lifetimes.
MaxHIGR is an international collaboration between leading HI centers and Congenital Hyperinsulinism International (CHI). Through MaxHIGR, physicians complete a form which includes information fields on the medical milestones in an individual’s diagnostic and treatment history. With participation in HIGR and MaxHIGR, the pairing of de-identified patient and physician-reported information will accelerate CHI’s goals to improve the understanding of HI and advance research for better treatments and patient care.
Who can participate in MaxHIGR?
- A respondent who has consented to participate in HIGR.
- The participant’s physician must be willing to complete a MaxHIGR physician form. The physician does not have to work at an HI center.
A HIGR participant is an individual living with HI. A respondent is an individual who completes the HIGR surveys (a person living with HI or their caregiver).
How can I join MaxHIGR?
- If you have not already done so, register and join HIGR.
- Once you log into your HIGR account, click the green “More” button in your profile, inviting you to join MaxHIGR. You will be asked to read an informed consent document and agree to join the study. You can view a step-by-step guide here.
- Once you have granted your consent to participate, complete the “MaxHIGR First Step” survey to choose whether you prefer to contact your physician, asking them to complete the MaxHIGR form, or prefer for CHI to contact your physician on your behalf.
- Once your physician completes the MaxHIGR form, they will provide you with a copy that you can upload into HIGR, or they will return the form to CHI directly to upload it into your HIGR profile. In your survey list, you will see the “MaxHIGR Second Step” survey, where you can upload the completed form from your physician.
Information for physicians
Please consider sharing this infographic with your patients to inform them of this sub-study and encourage them to join HIGR and MaxHIGR today.
Any HIGR participant may request their physician complete the MaxHIGR form. If you are not affiliated with one of the participating centers, your patients can still participate if they follow the steps listed above.
- You may begin receiving emails from eligible patients expressing their interest in participating and asking if you are willing to participate.
- You will then be asked to fill out the form with all relevant information and provide a copy to your patients, who will upload the form to the HIGR portal.
Where can you participate in MaxHIGR?
Just like for HIGR, we encourage you to participate in MaxHIGR from anywhere in the world.
In MaxHIGR’s pilot project stage, participation was led by CHI’s Centers of Excellence, and other hospitals, including:
- Collaborative Alliance on Congenital Hyperinsulinism (Magdeburg, Germany)
- Cook Children’s Medical Center (Fort Worth, Texas, USA)
- Great Ormand Street Hospital for Children (London, England)
- Hans Christian Anderson Children’s Hospital, Odense University Hospital (Odense, Denmark)
- Northern Congenital Hyperinsulinism Service (Liverpool, England and Manchester, England)
- Queensland Children’s Hospital (Queensland, Australia)
- The Children’s Hospital of Philadelphia (Philadelphia, Pennsylvania, USA)
- University Medical Center – National Research Center for Maternal and Child Health (Nur-Sultan, Kazakhstan)
Now, any HI physician can participate when asked by a participant or a respondent, regardless of location.
If you have any questions or would like more information about MaxHIGR, please contact us at info@higlobalregistry.org.
The Power of Patients
The HI Global Registry, which launched in 2018, consists of thirteen surveys made up of questions about the patient’s experience with HI over their lifetime. Thanks to patient participation in HIGR, CHI has created lasting programs and partnerships based on HIGR data, to move HI research forward. Patient-provided data from HIGR, in combination with physician-provided data from MaxHIGR, is a powerful resource for increasing the knowledge of HI in many areas including:
- Understanding how HI affects individuals throughout the life cycle and characterizing the disease and its subtypes.
- Increasing knowledge of patients’ health outcomes relative to different HI treatment options, settings and provider types.
- Identifying both positive and negative effects of treatment options.
- Understand glycemic variability in HI and average time in hypoglycemia at different points in the lives of people with HI on different treatment regimes.
- Uncovering how neonatal, childhood, and adult hypoglycemia levels correlate with health and psychological wellbeing. Expanding knowledge of the genetics of HI.
- Correlating the effectiveness of different treatments across different subtypes of HI.
- Identifying new endpoints (outcome measures) for clinical research.
- Adding to knowledge about HI when it occurs with syndromic.
- Comparing the health outcomes of people living in different settings.
- Providing information that may lead to advanced care guidelines for treating different subtypes of HI.
- Accelerating drug development.
Origins of MaxHIGR
The founding mothers of CHI launched HIGR to look at key parts of the lives of its participants as they relate to HI.
“HIGR is a structured way to collect this information and report out on its important findings. How did we do this? We attracted partners, leading physicians and scientists who decided to join them on this important project, and we reached out to potential sponsors to may this work possible, and they said, yes.” – Julie Raskin, CEO of CHI.
Dr. Indi Banerjee of the University of Manchester and the Royal Manchester Children’s Hospital was one of the experts who joined the CHI team in the early stages of developing HIGR as a medical advisor. He suggested adding a physician-reported component to this project. He imagined adding a report for each HIGR participant. It would include the medical milestones in an individual’s diagnostic and treatment history.
Dr. Banerjee won the 2021 Million Dollar Bike Grant to fund the MaxHIGR pilot project.
“If all the individuals with HI in the CHI community complete both the MaxHIGR and the HIGR surveys, the power of this study will be immense,” said Dr. Banerjee.
