Welcome and Introduction to the HI Global Registry (HIGR)
Collaborating with global partners, CHI has launched the HI Global Registry to improve the understanding of congenital hyperinsulinism (HI), with the goal of advancing better treatments and the development of cures. The HI Global Registry will support clinical trials and foster other research studies in the field of HI.
The platform for the HI Global Registry was developed by the National Organization for Rare Disorders (NORD) with patient, family and advocacy input. Several other rare disease communities house their global registries on this platform. The HI Global Registry is a patient friendly online database that securely collects, stores and shares HI data. Participants of the HI Global Registry not only can share their experiences to advance research by filling in patient questionnaires, but they can also learn about other participants’ experiences by viewing aggregated de-identified data reports in graphic form. This important initiative provides a powerful opportunity for the HI Patient Community to contribute directly to research, which will advance our understanding of HI, support the development of new treatments and improve patient care.
At the heart of the HI Global Registry initiative is the fundamental notion that collaboration with all research sectors (including healthcare professions, researchers, and industry) is essential to its success. The HI Global Registry will provide the opportunity for both the HI Patient Community and interested collaborators to view the data and learn from it. As partners, we can all work together to foster patient engagement and retention for the collection and sharing of quality data that will advance HI research.
We would very much appreciate your interest and support with the HI Global Registry. The HI Global Registry website is www.congenitalhi.org/higlobalregistry/. We hope you will share it with your patients and other potential interested parties.
Please contact us for HI Global Registry brochures, fact sheets and postcards for patients and their families. We are happy to send you some to you in the mail.
If you have any questions, please reach out to us by email at firstname.lastname@example.org or call us 973-842-7559.
With kind regards,
The HI Global Registry Research Team