The PAH Biobank is maintained at Cincinnati Children’s Hospital Medical Center under the direction of Dr. William Nichols. This resource of biological samples, genetic data, and clinical data collected from WHO Group 1 PAH patients is available to PAH researchers to enable studies that will allow us to better understand mechanisms of the disease and further treatment of patients. The goal of this project funded by the National Institutes of Health/National Heart, Lung, & Blood Institute is to enroll and bank biological samples, collect clinical data, and generate genetic data from at least 3,000 WHO Group 1 PAH patients.
Currently, there are 37 Centers from around the United States that enroll for the PAH Biobank. Participants are also enrolled here at Cincinnati Children’s Hospital in collaboration with the Pulmonary Hypertension Team. Enrollees that consent to the project can be any age as long as they are diagnosed with WHO Group 1 PAH, fit the inclusion criteria, and are willing to donate a small blood sample. In some cases, biological relatives of PAH Biobank participants may also donate blood.
De-identified biological samples, genetic data, and clinical data will be shared with the PAH research community by way of an application process with proposals reviewed by the Proposal Review Committee. Learn more about the PAH Biobank on our FAQ page.