About the PPHNet Informatics Registry
Collecting health information to improve the care for patients with pediatric pulmonary hypertension.
What is a registry?
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.
What is the purpose of the registry?
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.
Who funded the study?
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.
Who can participate?
Any patient who has had onset of pulmonary hypertension between birth and 18 years of age may be enrolled. Patients do not have to exhibit signs or symptoms of the disease at the time of enrollment.
Where is the study being conducted?
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?
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?
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?
The National Institutes of Health’s web site, Clinical Trials, provides general background information on clinical trials.
The National Heart, Blood, and Lung Institute, in collaboration with New England Research Institutes, has published a resource for parents, Children and Clinical Studies, at http://www.nhlbi.nih.gov/childrenandclinicalstudies/index.php
How can I get more information about the study and participation?
A summary of the PPHNet study can be found at https://clinicaltrials.gov/ct2/show/NCT02249923
Please contact the PPHNet Center nearest to you for information about eligibility and participation.