A registry is a recording of patients and their characteristics. The PHAR is the first attempt by the PHA to begin to characterize and keep track of PH patients. This ambitious undertaking hopes to be able to identify best practices for the care of PH patients. As the registry matures we will be able to ask scientific questions and test hypotheses. It represents the first step in PH patients taking the lead in directing the scientific discovery process.
Who can participate?
At present, the registry seeks to enroll PH patients that have been diagnosed in the last six months by centers of excellence. It is voluntary and patients are never pressured to participate. If you are not receiving care at one of the 35 or so Comprehensive Care Centers of Excellence in PH and you want to participate, then you will need to find a CCC.
Participation involves answering about 15 minutes worth of questions with a pulmonary hypertension research team member. Then your PH team will enter a variety of other information about you into the database. For example, we will enter how far you walked in six minutes, whether you have had all of the appropriate testing done, if you had your flu and pneumonia vaccinations and what your echocardiogram showed. The database will be updated a few times a year.
Are there risks to participation?
No. This is not a clinical trial. There is no intervention that is being evaluated. Rather, it is a descriptive tool that seeks to characterize PH patients and describe the process of care.
Why participate?
Be part of the solution. A first step in advancing the care of PH patients is to describe where we are at the present time. Next we can advance best practices at a national level. We can use the information to persuade insurance companies about the importance of appropriate testing and medications. Knowledge is power.
Does participating in the registry prevent me from participating in another clinical trial?
In general the answer is no. The majority of clinical trials that are currently enrolling (and we hope all the future clinical trials) will allow patients to be part of the registry and participate in clinical research studies.
