In 2022, enrollment in the Pulmonary Hypertension Association Registry (PHAR) has surpassed 2,000 participants. PHAR is the largest, active pulmonary hypertension patient registry in the United States. Three participating centers share how they identify potential candidates and recruit patients.

Site A: We include the official PHAR brochure within a general informational welcome packet that we give our newly diagnosed patients to take home and review. This is often given to patients at diagnostic catheterization or their first appointment establishing care. The PHAR Research Coordinator then meets with the patient before or after their next follow-up clinic appointment, about two weeks after catheterization, to review the opportunity to participate in the PHAR and answer any questions about the registry and ICF.

Site B: We recruit participants who are identified through a clinical visit and physician recommendation. We are more successful in recruiting participants when PHAR is discussed during the clinical appointment as opposed to having the initial contact come from the research coordinator.

Site C: Our initial workflow included identification of potential candidates during a clinic visit. This is followed by contact from research staff to discuss the registry and obtain consent. This process was cumbersome and overwhelming to our patients. A revised workflow has been outlined to allow patients greater opportunity to ask questions as they consider a new, life-changing diagnosis:

  • A telehealth visit is scheduled one to two weeks after right heart catheterization to review results and recommend appropriate therapy.
  • During the visit, the provider asks the patient if they are willing to hear more about PHAR and be contacted by a nurse care manager.
  • The Nurse care manager contacts the patient by phone, followed by a consent form and program brochure sent by mail.
  • At the next in-person visit, approximately six to eight weeks later, an appointment is made with the provider to assess response to initial therapy. The patient also meets with a nurse care manager separately for completion of the consent form and enrollment process.