Who Can Participate in PHAR?
In clinical research studies, the individuals who enroll and participate in the research are called the “study population.” When designing a study like PHAR, researchers carefully consider the question the study should answer and choose the study population that is most appropriate to answer this question. Currently, patients eligible for enrollment in PHAR are individuals who:
- Have World Health Organization (WHO) Group 1 PH (pulmonary arterial hypertension, or PAH) or WHO Group 3 PH (specifically, pediatric PH due to developmental lung disease) or WHO Group 4 PH (chronic thromboembolic pulmonary hypertension, or CTEPH): These types of PH (PAH and CTEPH) have the most data and expert recommendations on diagnosis and long-term treatment. Building on the wealth of information available on these types of PH helps PHAR reach its goals of improving quality of care and adhering to expert recommendations. PHAR includes adult and pediatric PAH, CTEPH and pediatric PH due to developmental lung disease patients.
- Are starting evaluation and/or treatment at a PH Care Center: The primary goal of PHAR is to assess quality of care at PHA accredited Pulmonary Hypertension Care Centers (PHCCs). To achieve this, PHAR enrolls patients who are being newly evaluated at accredited centers. Patients who are already being treated at a center will not be enrolled, since it would not be possible to uniformly gather data reflecting the complete history of their disease and its management.
- Speak and/or understand English or Spanish: Information in PHAR, including quality-of-life measures, is available in both English and Spanish.
- Provide informed consent: Enrollment in PHAR is completely voluntary and neither the quality of your care nor your relationship with your medical team will change if you decide not to participate. Your medical and research teams will discuss exactly what your participation involves and answer questions you may have before you choose to participate.