Refer a Patient With Congenital Hyperinsulinism (HI)

Congenital hyperinsulinism is rare; most children’s hospitals encounter only one or two cases a year. Since October 1998, the Congenital Hyperinsulinism Center at Children’s Hospital of Philadelphia (CHOP) has evaluated and treated more than 1,600 patients — making it the largest program of its kind in the world.

• We provide the full spectrum of care, from diagnosis through treatment, including education, genetic counseling, psychosocial support and long-term follow-up. Our team is among the best equipped anywhere to diagnose and treat HI, resulting in shorter hospital stays and more cost-effective treatment.
• Our center draws on the expertise of specialists from throughout the hospital, all uniquely suited to caring for the patient and family. We offer support from a wide variety of subspecialties, including a nationally top-ranked neonatal intensive care unit, allowing us to provide seamless care for children with complex conditions.
• For children with suspected focal HI, our center performs 18F-DOPA PET scanning under an FDA-approved research protocol. This innovative imaging technique helps surgeons pinpoint abnormal tissue and focal lesions, sparing healthy cells in the pancreas. This approach increases the likelihood of a cure while reducing the risk of diabetes. Conventional radiological studies, such as CT scan or MRI, cannot identify focal lesions in the pancreas.
• We offer a collaborative, multidisciplinary clinic for children who require on-going medical treatment for HI or those who have undergone near-total pancreatectomy and are at risk of developing diabetes and pancreatic insufficiency. At our HI Multidisciplinary clinic, children see multiple specialists during one visit, resulting in more collaborative and coordinated care. 

We invite you to contact us at any point in your patient evaluation process to discuss options or to seek advice on patient management. We serve as a resource for physicians and families, providing information to gauge when a child can be diagnosed and managed at their local institution, and when the condition requires a visit to CHOP. Once a patient fails a trial of diazoxide therapy, it is usually an appropriate time to consider a transfer to Children’s Hospital.

Contact the Congenital Hyperinsulinism Center by phone at 215-590-7682 or email hyperinsulin@chop.edu.

• If the patient may need surgery, it is useful to send a specimen to a specialty genetic reference lab for mutation analysis as early as possible, since results may take more than two weeks. We recommend sending the genetic testing to the Genetic Diagnostic Laboratory at the University of Pennsylvania or to the University of Chicago Genetic Services. Please also include parental samples.
• Initiate precertification from the insurance company (allow a minimum of 72 hours to complete). We have an insurance specialist who can assist you in this process. Listed below are items needed to start the referral process. If a letter of medical necessity is required, please contact us for assistance.

1. Insurance face sheet and front/back of insurance card
2. Medical summary/central line information/ECHO report; please also send images with the family
3. Labs with critical sample; genetic results if available
4. Name and contact information (including email address) for the case manager and social worker involved with the patient
5. Transport availability — your team or ours?
6. Patient bed number, unit and nurse's station phone number
7. Please order meter, strips, lancets along with glucagon emergency kit to come with the parents to CHOP. They will need those for returning home. 

• Complete pre-admission checklist (PDF)

Paperwork can be faxed to 267-425-0234, attention HI Center, or scanned and emailed to hyperinsulin@chop.edu.

Please call 215-590-7682 or email hyperinsulin@chop.edu if you have any further questions.

Please note: Out-of-state referrals may require prior authorization and/or a negotiation of rates with patient's insurance company. The time frame can range from a few days to weeks.

Children's Hospital works with referring physicians before transport and maintains close communication and collaboration after the patients return home.
Once a patient arrives at CHOP, our multidisciplinary team of physicians, fellows, residents, nurse practitioners, registered nurses, social workers, nutritionists, genetic counselors and case management specialists will meet with the family and decide on the best approach for managing each patient’s specific hyperinsulinism needs. Our team will explore different strategies for medical management and review genetic results to determine if a PET scan is indicated.

Based on the response to medical therapy, your patient may require a surgical intervention, which can include:

• Partial/near-total pancreatectomy as determined by genetic results and/or PET scan
• G-tube placement for ongoing medical management

Prior to discharge from CHOP, patients with focal HI will undergo a cure fast to ensure that their HI was completely treated. Patients with diffuse HI treated either medically or surgically will undergo a safety fast to ensure stable glucoses on their home-going regimen. Our team aims to provide referring physicians updates throughout the admission and will provide a plan of care before the patient is discharged.