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I'm Aware That I'm Rare: the phaware® podcast

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Dunbar Ivy, MD - phaware® interview 185

Aug 31, 2018

Dr. Dunbar Ivy discusses the work of the Pediatric Pulmonary Hypertension Network, (PPHNet) on the network's 10th anniversary. PPHNet is a network of clinical specialists, researchers, and centers bringing a collaborative and multidisciplinary approach to improving care for children with pulmonary vascular disease.

Hi, this is Dunbar Ivy. I'm Chief of Pediatric Cardiology at the University of Colorado School of Medicine and Director of the Pediatric Pulmonary Hypertension Program at Children's Hospital of Colorado.

I'd like to talk to you about the Pediatric Pulmonary Hypertension Network [PPHNet]. It's our tenth birthday. When we first started the network, we were a loosely associated group who had strong interest in pulmonary hypertension. Our initial goals were to learn how to treat patients better and to develop guidelines.

Over the last 10 years, we've been successful in some areas and challenged in others. I think our successes have been in the development of some guidelines, particularly for pediatric pulmonary hypertension in general and also for children with bronchopulmonary dysplasia, diaphragmatic hernia, and treatment of pulmonary hypertension in a group of patients with prematurity and pulmonary hypertension. Our group has been very involved in the World Symposium of Pulmonary Hypertension in driving recognition of pediatric causes of pulmonary hypertension in the classification of pulmonary hypertension and to our adult colleagues, because as we get better at treating children they're going to become and are becoming adults, and our adult colleagues need to know and understand these unique causes, these developmental causes of pulmonary hypertension.

I think the next frontier is helping the regulatory agencies and industry to define how to study these medicines in children to the benefit of the physicians, the families, the regulatory agencies, so that we can do a better job of knowing how to use medications in children. We've been very fortunate to have an extremely collaborative group and the senior members of the group have very much felt that we need to support our junior colleagues in their professional careers. That makes for a collegial environment. When we have an idea that comes up, then there's a discussion about who wants to take the lead and people are very supportive of spreading out the ideas. An example would be a genetic abnormality called TBX4 that was initially discovered to be strongly associated with children with pulmonary hypertension in the Netherlands and our group has taken that and then people have contributed their cases where they found this. We found that it's a cause of persistent pulmonary hypertension of the newborn, so this helps clinicians try to figure out why a baby may have PPHN. There is no direct targeted therapy for that, but I think it's an example of how the group has worked together for the common good.

I think the next frontier is to expand the group. There are more and more people with a dedicated interest in pulmonary hypertension and this will allow for better treatment of children across the United States and Canada because it's hard to travel. I think the network will expand and that will allow us to enroll more patients in our registry and then have more expert care throughout the country. That will, I think, be an important goal.

My name is Dr. Dunbar Ivy and I'm aware that I'm rare.

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