12
May
2016
|
08:25 PM
America/Chicago

Why develop a center for clinical excellence for a rare disease?

Episode 4: Pediatric Leadership: The New Medicine Podcast

Today's guest on Pediatric Leadership: The New Medicine Podcast is Paul Thornton, M.D., Cook Children’s Congenital Hyperinsulinism Center and Endocrine and Diabetes program and an Endowed Chair.

Why develop a center for clinical excellence for a rare disease?

Getting help for patients with rare diseases can often be a large struggle for families. Finding someone who understands and has the experience to properly diagnose and treat can lead to frustration for families. Often there is no place to go. For long standing issues, this can lead to bouncing to multiple doctors without resolution of symptoms.

For more acute issues, not having an expert available can cause significant morbidity, even mortality. Today on Pediatric Leadership: The New Medicine, we talk to one of our pediatric endocrinologists who set up a center for treating a rare disease, hyperinsulinism.

Dr. Thornton is a pediatric endocrinologist at Cook Children’s and is the founder of the Cook Children’s Hyperinsulinism Center which is one of only two centers in the country focused on hyperinsulinism. The website for the team lists endocrinologists, pediatric surgeons and many other medical specialities as well as coordination between education, social work and even Ralph Lauren, one of Cook Children’s play therapy dogs.

Questions to work through on the topic:

What is hyperinsulinism and when should a clinician expect it?

What motivated you to begin building a center for treating such a rare condition?

How did you get the institution on board? Who did you have to convince?

What were some of those first steps that got the ball rolling?

What has been the hardest step?

How can someone find out more about the center or refer a patient?

What part of your work are you most proud of?

What is the most important quality for a leader in pediatrics?

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