Every year, CHI publishes an annual report highlighting significant milestones from the past year, plus an updated snapshot of some key data from the registry. The Annual Reports are written for the HI community: people living with HI, their families, and anyone interested in HI and its related research.
- 453 participants from 51 countries contributed data to HI research
- Three peer-reviewed articles were published in medical journals using de-identified data from HIGR
- Posters sharing de-identified HIGR data were presented at two medical conferences
- Physician-reported data, MaxHIGR, was launched
View all Annual Reports here.
Journal articles are one of the ways that researchers share their findings with other researchers all over the world. These articles are peer-reviewed, which means the article was closely examined by a panel of scientists who are experts in the same field of study as the author (i.e., the author’s peers) before the article was published in a journal. This is a form of quality control in research to ensure that the methods and conclusions are appropriate before the work is published.
HIGR data has been published in several peer-reviewed journal articles. These articles have been written for a scientific audience, so we have included a short summary of each article to help make the research more accessible to the wider HI community. If you have questions about the research, please reach out to us at firstname.lastname@example.org.
Authors: Tai L. S. Pasquini, Mahlet Mesfin, Jennifer Schmitt, Julie Raskin
This paper describes high-level data from 248 HIGR participants from October 2018 to January 2022.
Authors: Julie Raskin, Tai L. S. Pasquini, Sheila Bose, Dina Tallis, Jennifer Schmitt
This paper details three family perspectives on obtaining an HI diagnosis and navigating life with HI. The paper also describes an organizational overview of CHI and CHI-sponsored programs, such as HIGR and the Collaborative Research Network (CRN).
Authors: Indraneel Banerjee, Julie Raskin, Jean‑Baptiste Arnoux, Diva D. De Leon, Stuart A. Weinzimer, Mette Hammer, David M. Kendall, and Paul S. Thornton
This paper was authored by several CHI Collaborative Research Network (CRN) members, describing the key challenges in HI, including delayed diagnosis and intervention, limited efficacy of available treatment options, adverse effects of currently available treatments, and problems with glycemic monitoring. The paper also includes the results of the Global Access Care survey, where HI physicians across the world were surveyed on their perspectives on medication access barriers in their country.
COMING SOON: Conference Posters
Conferences and scientific meetings are another way that researchers share their findings with each other. Preliminary or early-stage results are often shared via posters that are presented during informal poster sessions at conferences. These provide an opportunity for researchers to talk about their work in one-on-one or small group discussions with other researchers.