Congenital Hyperinsulinism International (CHI) is launching a new CGM Access Program for people with congenital hyperinsulinism (HI) who are interested in trying continuous glucose monitors (CGMs) or who have inconsistent access to CGM devices. As a part of the program, participants will be encouraged to complete surveys about their experiences with HI and habits before and after using CGM, as well as participate in HI research by sharing the data from the device.
What is a CGM? A continuous glucose monitor (CGM) is a wearable device that measures glucose levels every few minutes through a sensor inserted under the skin. This information is sent to a smartphone or receiver via Bluetooth. While CGMs were originally developed for people with diabetes and are not currently approved for use in HI, many families in the HI community find CGMs useful for identifying glucose trends and detecting hypoglycemia in between glucometer checks, especially overnight.
Who is eligible? At this time, the program is only open to people with HI who live in the United States, but we encourage interested individuals from other countries to submit the form. If we are able to expand the program to your country, we will contact you. Anyone living in the US who qualifies for the program and is not currently using a CGM or has inconsistent access to a CGM device is encouraged to apply. There are no age limitations for this program. If you or your child with HI are accepted into the program, you may receive up to a 12-month supply of Dexcom G7 CGM sensors from CHI. For a limited number of participants, a receiver may be provided if the person with HI does not have a compatible smart device (https://www.dexcom.com/compatibility). The receiver is used to display glucose readings from the sensor.
What is required to participate? To participate in the CHI CGM Access Program:
- The person with HI that will use the CGM currently lives in the United States.
- The person with HI is currently under the care of a physician in the United States who supports the use of CGM for the participant. This will be verified by completing a physician verification form provided by CHI to the participant via email. This formed must be signed by the physician and returned to CHI via email. CHI is unable to provide medical guidance on the use of CGM. All medical decisions must be made between the participant and their medical provider.
- Participants must verify their shipping address via email prior to each shipment. Failure to verify your shipping address with a CHI staff member before devices are shipped may result in delayed shipping or removal from the program.
How do I join? If you are interested in the CGM Access Program, please complete the form below to determine eligibility. By submitting this form, you give us permission to contact you about this program.
Please note that this program is currently only available to residents of the United States. Others are encouraged to complete the form to register their interest if the program opens to additional countries at a later date.
How can you support HI research through this program? Community-guided research is the most effective way to advance treatments and technologies available to support your needs and improve the lives of people with HI. CHI supports HI research through the HI Global Registry (HIGR). a patient-powered registry for HI research. Through HIGR, people with HI and their caregivers can answer surveys and share glucose monitoring device data (CGMs and glucometers) to contribute directly to HI research. The findings from HIGR inform the development of new medications, best-practice guidelines for clinicians treating people with HI, and awareness campaigns to make this rare disease better understood.
Through the CHI CGM Access Program, participants will be encouraged to share data from the CGM and complete the surveys in HIGR. We will ask participants to complete some surveys every 6 months. Analyzing the data from the CGM device with the survey responses over time will contribute to a better understanding of the role of CGM in HI glucose management and monitoring practices. In addition to the benefits of receiving devices through this program, participants who take part in the HIGR-related activities will be eligible for the HIGR Participant Appreciation Program, which recognizes those who contribute to HI research.
CHI is committed to protecting your privacy. Only qualified researchers can apply to use HIGR data in HI research, and only authorized HIGR staff members with data privacy training are able to access your information in the registry. When CHI shares data with qualified researchers, we do not share your name or other identifying information. All information that may identify you is removed to create de-identified data. To learn more about HIGR, including data privacy and confidentiality, please visit https://congenitalhi.org/higr-frequently-asked-questions/.
Apply for the CGM Access Program here!
