The National Institutes of Health funded this multi-center study, which is conducted through the PPHNet network of clinicians and researchers dedicated to the improvement of care for children with pulmonary vascular disease.
What is the purpose of the registry?admin2023-03-10T01:54:34+00:00
The goal of this study is to create a registry of patients with pediatric pulmonary hypertension. By gathering a large amount of information over an extended period of time we hope help to patients with childhood onset pulmonary hypertension.
Patient registries are a way to collect and organize information about a group of people with a specific disease or condition for the purposes of improving understanding of the disease, and developing effective treatments.
Who can participate?admin2023-03-10T01:58:10+00:00
The study is being conducted at eight hospitals across the country and Canada. See the “Centers page” to find the center nearest you. We anticipate participation of approximately 1,000 patients across all sites.
What would I have to do?admin2023-03-10T02:03:13+00:00
The only information that we gather will already be regularly collected at office visits. No additional visits or tests will be ordered for this research. The information will be pulled directly from the electronic medical record and will immediately be de-identified.
What are the benefits?admin2023-03-10T02:03:46+00:00
This study will help researchers learn more about pediatric onset pulmonary hypertension and how to best care for this growing group of patients. What we learn from this registry may improve the care pediatric pulmonary hypertension patients receive in the future.
How can I get more information about clinical studies?admin2023-03-10T02:04:42+00:00