The Congenital Hyperinsulinism International Center of Excellence program was initiated in 2020 when congenital hyperinsulinism (HI) care centers from around the world were invited to submit an application to CHI to receive the designation of Center of Excellence (COE). The CHI COE designation application was developed by an international committee of HI specialists, clinicians, and patient representatives who worked together to identify the requirements. The program criteria include demonstrated excellence in clinical care, academic research, collaboration, and a commitment to patient care.
The HI care centers designated by CHI as COEs provide exceptional multi-disciplinary care to congenital hyperinsulinism (HI) patients and their families. This means that in addition to physicians, patients are treated by a team of clinicians with significant HI experience in departments such as surgery, endocrinology, genetics, and neonatology. Further evidence of this multi-disciplinary approach involves an extended team of clinicians in specialties such as nutrition and feeding therapy, gastroenterology, neurology, occupational therapy, and more tailored to the needs of each HI patient. Together, these integrated teams from the COEs provide the highest standard of care for people with HI.
All CHI designated COEs have an extensive history of diagnosing and treating HI patients. All COEs offer genetic analysis and rapid pathology testing, interpreted by medical specialists with HI experience, to design comprehensive treatment plans for patients. Following treatment, each COE offers services via telemedicine to support continuity of care for non-local patients. When ready, COEs have individual transitional care procedures to support children entering adulthood to prevent disruption of care. Additionally, COEs are committed to HI research and actively participate in several scientific studies and at least one HI-relevant clinical trial.
In July 2024, CHI announced the program’s second round of designations. Read the 2024 press release announcing the newly designated and re-designated COEs.
Click to learn more about the CHI Centers of Excellence named in 2024:
- Charite-Universitatsmedizin Berlin – Berlin, Germany
- Collaborative Alliance on Congenital Hyperinsulinism – Magdeburg, Germany
- Congenital Hyperinsulinism Center at the Children’s Hospital of Philadelphia –Philadelphia, PA, United States
- Great Ormond Street Hospital Congenital Hyperinsulinism Service – London, United Kingdom
- Northern Congenital Hyperinsulinism Service – Manchester and Liverpool, United Kingdom
- Odense University Hospital – Odense, Denmark
- The Hyperinsulinism Center at Cook Children’s Medical Center – Fort Worth, TX, United States
- University Children’s Hospital of Düsseldorf – Düsseldorf, Germany
What COEs say about the CHI Centers of Excellence Designation Program:
“It is a privilege to be a CHI Center of Excellence, showcasing the highest standards of care and pushing boundaries of research and innovation in hyperinsulinism. We are grateful to our children and families living with the condition for urging our team of nurses, doctors, dietitians, speech and language therapists and surgeons to strive for excellence.”
– Dr. Indi Banerjee, Clinical Lead for the Northern Congenital Hyperinsulinism Service
“At Odense University Hospital, we have developed a long-standing special focus on research and clinical management of HI in close collaboration with international researchers and CHI, which has brought dedicated hyperinsulinism centers more together. The designation as COE will strengthen our position as a national and international hyperinsulinism center in both clinical and research context. We are honored to be selected for this acknowledgement and look forward to future international collaboration to improve the diagnosis and management of children with hyperinsulinism.”
– Dr. Henrik Christesen, Clinical Professor, Odense University Hospital
“This acknowledgment has served as a catalyst, inspiring us to redouble our efforts in providing superior care and engaging in collaborative research to explore innovative treatment modalities. Furthermore, the award provided us with the chance to collaborate with other Congenital Hyperinsulinism Centers of Excellence in research, facilitating the exchange of knowledge and experiences in managing this rare disease.”
– Dr. Antonia Dastamani, Lead of the HI NHS Specialized Service, Great Ormond Street Hospital
“I am thrilled that the Congenital Hyperinsulinism Center at Children’s Hospital of Philadelphia (CHOP) has again been recognized as a Center of Excellence by Congenital Hyperinsulinism International,” We are grateful to CHI for their longstanding commitment and support of our important work and look forward to providing the expert, collaborative care CHOP is known for to even more patients in the future.”
– Dr. Diva D. De León-Crutchlow, Chief of the Division of Endocrinology and Diabetes and Director of the Congenital HI Center, CHOP
“Our cooperation with CHI is absolutely excellent! Thanks to CHI, the exchange between CHI centres is stronger than ever. We are delighted to see CHI’s unwavering commitment to affected families and to raising awareness among the general public on crucial topics like early recognising relevant neonatal hypoglycaemia.”
– Dr. Thomas Meissner, Deputy Director of the Specialist Clinic in Pediatric and Adolescent Medicine, University Hospital of Düsseldorf
“Designation as CoE by the global patient association has increased awareness for research opportunities, both in diagnosis as well as therapeutical trials … This has improved our patient care in 6 trial participants.”
– Dr. Klaus Mohnike, Director of Collaborative Alliance on Congenital Hyperinsulinism, Otto-von-Guericke University Magdeburg, Germany
“It is an honor to be recognized and be validated for the hard work our HI team has done in caring for both our local and the national HI community. Being named a center of excellence has helped us promote our center and ensure the trust of the new referring families. Our new patients have told us that the designation provides them with a sense of confidence, knowing that they are at a multi-disciplinary HI center that delivers the highest level of care and the newest research regarding HI.”
– Dr. Paul Thornton, Director of the HI Center at Cook Children’s Medical Center
History of the COE Program
Prior to the CHI COE program, no review process or certificate was awarded to institutions for the care of those with HI. The CHI COE Program was initially made possible through the Global Genes 2020 RARE Patient Impact Grant Program, the Chan Zuckerberg Initiative Rare As One Grant, and other generous donors.
The Inaugural CHI COEs named in 2021 were:
- Congenital Hyperinsulinism Center at the Children’s Hospital of Philadelphia, PA, United States
- The Hyperinsulinism Center at Cook Children’s Medical Center in Fort Worth, TX, United States
- Great Ormond Street Hospital Congenital Hyperinsulinism Service in London, in the United Kingdom
- Charite-Universitatsmedizin Berlin and the University Children’s Hospital Duesseldorf partnership in Germany
- Collaborative Alliance on Congenital Hyperinsulinism headquartered in Magdeburg, Germany
- Northern Congenital Hyperinsulinism Service in Manchester and Liverpool, in the United Kingdom
Read the 2021 press release here.
2021 press release also available in German here.
If you have any questions, please contact Tai Pasquini, CHI Director of Research and Policy, by emailing tpasquini@congenitalhi.org or calling her at 973-842-7559.
