Recent Published Articles
The Birth Prevalence of Congenital Hyperinsulinism: A Narrative Review of the Epidemiology of a Rare Disease
This publication details a study which was conducted to determine the best estimate of HI birth prevalence based on available studies and to assess whether or not persistent HI has a similar birth prevalence in all ancestry groups. A targeted literature review of epidemiological data on HI was performed and an analysis of the strengths and limitations of the identified studies was undertaken.
Proposed Screening for Congenital Hyperinsulinism in Newborns: Perspective from a Neonatal–Perinatal Medicine Group
In this article, titled “Proposed Screening for Congenital Hyperinsulinism in Newborns: Perspective from a Neonatal–Perinatal Medicine Group” and published on May 17, 2024, the authors from Pennsylvania State University propose doing a blood glucose and ketone screen before babies are discharged for home (at the very same time that newborn screening for other conditions occurs). To prove their point of why universal screening is necessary, the authors include data from Congenital Hyperinsulinism’s HI Global Registry: “These data from the Hyperinsulinism Global Registry show that current clinical practices are not effective in screening for … HI.” Newborns with HI who were discharged from the hospital without a blood glucose level screen were at a much higher risk of having developmental delay from prolonged hypoglycemia than those babies who did have their blood glucose checked before leaving the birthing facility. Click here to read the article.
NEW: The first-ever international hyperinsulinism guidelines have been published and are now available to the public! These guidelines are a collaboration of work by HI experts around the world, including many who are a part of the CHI Collaborative Research Network and Tai Pasquini of the CHI staff. Patient and caregiver representatives of the CHI Congenital Hyperinsulinism Collaborative Research Network provided the patient perspective. These guidelines are available free of charge and can be downloaded and shared with your care team. The new recommendations include:
- Diagnosis
- Medical Management
- Surgical Management
- Discharge Planning
- Longterm Management of Patients with Hyperinsulinism
And more! Find the full guidelines by clicking here.
Global Registries in Congenital Hyperinsulinism
This article characterizes HI through the experience of individuals who live with it. It includes descriptive statistics on the birthing experience, hospitalizations, medication management, feeding challenges, experiences with glucose monitoring devices, and the overall disease burden to provide insights into the current data in the HI Global Registry (HIGR) and demonstrate the potential areas of future research.
Click here to read the article.
Congenital Hyperinsulinism International: A Community Focused on Improving the Lives of People Living With Congenital Hyperinsulinism
This article describes the current challenges of living with HI including diagnosis and disease management told from the perspective of people who live with the condition, shares family stories of life with HI, and how Congenital Hyperinsulinism International is working to improve the lives of HI patients and their families.
Click here to read the article.
Article on Congenital Hyperinsulinism in Infancy and Childhood
For the first time in the medical literature, the perspective of families and patients with congenital hyperinsulinism is published together with insights from clinical experts. In this publication, the authors Indraneel Banerjee, Julie Raskin, Jean‑Baptiste Arnoux, Diva D. De Leon, Stuart A. Weinzimer, Mette Hammer, David M. Kendall and Paul S. Thornton, present the key clinical challenges and unmet needs, infused with knowledge from the patient and family perspective on daily life with congenital hyperinsulinism.
Podcasts
Congenital Hyperinsulinism with Advocate Julie Raskin.
The podcast series “It Happened To Me, I’m not alone & neither are you” episode #37 featured Julie Raskin, Chief Executive Officer of Congenital Hyperinsulinism International (CHI). Julie’s journey began when her son Ben was born with congenital hyperinsulinism (HI), a condition that causes the overproduction of insulin leading to severe hypoglycemia. Determined to improve Ben’s life and the lives of others affected by HI, Julie co-founded CHI in 2005. Listen to the podcast here.
Pile It On: Stories about being overwhelmed.
The podcast series “The Story Collider” featured Julie Raskin, CEO of Congenital Hyperinsulinism International (CHI), and Emmanuel Paul, founder of Caribbean Television Network.
After Julie Raskin’s son Ben was born with congenital hyperinsulinism (HI), a condition that causes the overproduction of insulin that leads to severe hypoglycemia, Julie joined a dedicated group of parents whose children were also affected by the condition to found Congenital Hyperinsulinism International (CHI). Since 2010, Julie has led this active worldwide community of patients, their families and caregivers, expert clinicians and researchers, and professionals in the biotech field to fulfill CHI’s mission to find better treatments, prevent death and brain damage, and support HI families. Listen to the podcast here.
Chasing a Cure: Searching for answers to Congenital Hyperinsulinism.
In celebration of Rare Disease Day, we hear from a panel of five inspiring guests who share their unique perspectives about a rare condition called Congenital Hyperinsulinism. Listen to valuable insights from Julie Raskin, Co-Founder and Executive Director of Congenital Hyperinsulinism International (CHI), and mom to Ben who has congenital hyperinsulinism; Sheila Bose, Vice President of the Board of Directors for CHI and parent to 3 children born with congenital hyperinsulinism; Dr. Sarah Flanagan, Associate Professor in Genomic Medicine at the University of Exeter Medical School; Dr. Diva De León-Crutchlow, Chief of Endocrinology and Diabetes and Director of the Congenital Hyperinsulinism Center at Children’s Hospital of Philadelphia; and Dr. Paul Thornton, Medical Director of the Endocrine and Diabetes Program at Cook Children’s Medical Center, Texas. Listen to the podcast on Spotify here.
