Congenital Hyperinsulinism Center Frontier Program Highlights

HI Frontier Program Highlights

In 2020, the Congenital Hyperinsulinism Center at CHOP was selected as a Frontier Program, a designation given to a select number of new initiatives at the hospital that show exceptional promise of creating breakthrough care for children with a specific condition.

Over the last year, our HI Center continued to set the standard in patient care and research for hyperinsulinism (HI).

Here are a few notable highlights:

• The HI Center added neuropsychologist Sophie Foss, PhD, to the team so children have easier access to screening and evaluation for behavioral and learning disorders.
• Some children who need frequent glucose monitoring for medication management can take advantage of having a professional continuous glucose monitor placed during a clinic visit. Then the follow-up can be done remotely, saving the family a trip to CHOP while still ensuring the child’s treatment is appropriate.
• There were 20 surgical patients (15 focal HI; five diffuse HI) and all focal patients were cured.
• The center added a pediatric endocrinologist, Julia Crowley, MD, to the team, opening up additional multidisciplinary clinic availability.
• We continue to actively collaborate with the Epilepsy Neurogenetics Initiative (ENGIN), another Frontier Program, for evaluation of care of patients with hyperinsulinism/hyperammonemia syndrome, who have seizures in addition to hyperinsulinism.
• The center has continued to partner with the nonprofit group Congenital Hyperinsulinism International (CHI) and the broader HI community by participating in the CHI Collaborative Research Network. Diva De León-Crutchlow, MD, MSCE, our HI Center Director, serves as the lead researcher. Through this initiative, we are working on establishing more comprehensive screening approaches for early HI diagnosis and increasing awareness and disseminating information.
• Dr. De León-Crutchlow is the lead author of the newly published global HI guidelines, a collaboration between the U.S. Pediatric Endocrine Society, the European Society of Pediatric Endocrinology, the Latin American Society of Pediatric Endocrinology and the Asian-Pacific Pediatric Endocrine Society.
• CHOP hosted a Hyperinsulinism Scientific Symposium on April 13 – 14, 2023, that drew 122 medical professionals and scientists from around the world.
• The HI Center enrolled patients in six active clinical trials and is initiating new industry-sponsored clinical trials of promising therapies.
• Members of the HI team continue to be leaders in research and treatment. They presented at 17 national and international conferences and authored 10 new publications.