The Pulmonary Hypertension Association Registry is a collection of health information from people living with pulmonary hypertension. The goal of PHAR is to improve quality of life and survival of PH patients by helping researchers and clinicians understand the condition better and how it’s treated.
The PHAR aims to:
- Measure and improve overall quality of care.
- Examine how quality care affects outcomes that patients value.
- Access the effectiveness and cost-efficiency of different treatment approaches.
- Explore risk factors and differences in outcomes by region or center.
- Support clinical trials of new therapies.
- Encourage collaboration across the PH community at large.
Why your participation matters
Enrolling in the PHAR is a meaningful way to contribute to better care for everyone living with PH. By sharing your health information, you help researchers identify disease patterns, secure funding and work toward more effective treatments, and possibly, a cure. The data you provide becomes part of the conversation with your care team, helping them make more informed decisions about your treatment. Your participation also supports learning between health care teams, improving the quality of care for all.
How to participate
Your health care team at an accredited PH Care Center may ask if you’d like to participate in this research project. To qualify you must:
- Be a new patient at an accredited PH Care Center.
- Have a new or established diagnosis of PAH, CTEPH or pediatric PH due to developmental lung disease.
- For adult patients, enroll within six months of your first outpatient visit. For pediatric patients, enroll within 12 months of your first outpatient visit.
If you choose to participate and sign the consent form, you’ll complete an initial survey. Your doctor will also submit information. During your scheduled follow-up visits, you’ll complete another brief survey about your symptoms and overall health status. Your health care team will also provide updated information.
Time commitment
The first survey may take up to 30 minutes. Follow-up surveys, done every six months during regular visits, take about 10-15 minutes. Some questions, such as birth date and place of birth are only asked once.
Information collected
PHAR gathers clinical and personal information, including:
Diagnosis details (e.g., date of diagnosis, test results, initial treatments).
Current health status (e.g., challenges with activity, hospitalizations, symptoms, medications).
Follow-up information (e.g. treatment changes, disease progression)
Data storage and security
All patient data is stored securely at the Data Coordinating Center at the University of Washington in Seattle. With 20 years of experience managing medical studies and clinical trials, the DCC follows strict privacy and security standards. Your personally identifiable information is stored on a computer that is not connected to the internet or any network, and it will never be shared with anyone outside the study team.
How we protect your personal information
Your data is collected through a secure, HIPAA-compliant platform and encrypted before being sent to the Center for Health Services and Clinical Coordination. This encryption is like the technology banks use for online transactions. If you decide to participate by signing the consent form, you can change your mind at any time. If you choose to withdraw, PHA staff will provide a form to request that your data be removed from the registry.
Who can see your data?
Only CHSCC registry coordinators who manage the project have full access to the data. At your PH Care Center, your site’s study coordinator can see your clinic’s specific information. This data may be used to support your care or evaluate treatment practices at your PHCC.
Researchers outside of the project only receive de-identified data (data that has all personal information removed). Before accessing any PHAR data, researchers must submit a proposal outlining their research and data needs. This proposal goes through a review process by PHA. If approved, the researchers receive only the specific data needed for their study. Under no circumstances is personally identifiable information released.
Find a PHAR site near you
Search on our interactive map for a PH Care Center that participates in the patient registry.
PHAR Clinical Sites
