Who will Benefit From PHAR?
There are many individuals and groups who will benefit from your participation in PHAR.
YOU will benefit from PHAR
Over time, PHAR may improve the quality of care for PH patients:
- PHAR will allow researchers to study disease patterns in the hopes of funding future studies of PH, developing new PH treatments and finding a PH cure.
- It will also give you the opportunity to help other PH patients by allowing healthcare professionals to learn best care practices from each other.
- Additionally, you will be part of a research network that seeks to educate and empower you with regular newsletters about the progress of PHAR and about clinical research in general.
YOUR HEALTHCARE TEAM will benefit from PHAR
Information will be provided to your healthcare team that will help them learn more about their Center and about PH care.
The data you contribute — including two health-related quality of life surveys asking how your PH is affecting you — will be available to your team and can begin a conversation about how you are feeling.
In addition, your healthcare team will be provided with information about their entire patient base (For example: What percentage of patients at the Center have had a right heart catheterization? How many patients are on IV therapies? How many hospitalizations did the Center have last year?) with comparisons to national averages. This type of information can identify opportunities for improvements (“quality improvement initiatives”) to provide even better care than they already are.
THE SCIENTIFIC COMMUNITY will benefit from PHAR
Many papers about PH begin with a reference to a pivotal study from the 1980s, citing that the average survival time in WHO Group 1 PH (pulmonary arterial hypertension [PAH]) is 2.8 years without therapy. However, this data (from a National Institutes of Health registry) was collected in a time where there were no treatments other than lung transplantation for PAH. Thanks to the work of the scientific community and pharmaceutical industry, there are now 12 FDA-approved therapies and survival has significantly improved. PHAR will help the scientific community by providing an updated understanding of the “natural course” of the disease, in an era with oral, inhaled, subcutaneous and intravenous treatment options.
Additionally, data collected in PHAR will be available to researchers with a specific question about PH. Interested investigators can submit a research question to PHA with a plan of how they will use PHAR to answer this question. This proposal will be reviewed by a committee of experts in PH research to ensure the question is appropriate and that PHAR can reasonably answer this question. After their approval, the investigator will be provided with a limited dataset to pursue their proposal, which PHA anticipates will be written into a manuscript that further contributes to the understanding of the disease.