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. The patients who will be initially enrolled in PHAR are patients who:
- Have WHO Group 1 (PAH) or WHO Group 4 (CTEPH) pulmonary hypertension: These types of PH currently 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 will help PHAR reach its goals of improving quality of care and adhering to expert recommendations. PHAR will include both adult and pediatric PAH and CTEPH patients.
- Are starting evaluation and/or treatment at a PH Care Center: The primary goal of PHAR is to assess quality of care at expert centers. To achieve this, PHAR will enroll 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, will be 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 any and all questions you have before you choose to participate.