Scientific research plays a vital role in improving health care and developing new treatments. It follows a structured process that helps researchers ask questions, test ideas and interpret findings that can shape medical care. In pulmonary hypertension, research helps explain how the disease develops, how it affects the body and how to treat it more effectively.

Every breakthrough in PH research began with someone choosing to get involved. Whether you live with pulmonary hypertension or not, you can play a vital role in advancing our understanding and treatment of PH.

  1. People with PH are essential to research. Researchers and clinicians need people with PH to participate in research studies and clinical trials. No one knows PH like those who live with it every day. Your lived experience provides insights that researchers and physicians do not have. Every treatment available today exists because someone volunteered. Your participation helps bring us closer to a cure.
  2. There are many ways to support research. Whether you are newly diagnosed or have had PH for years, are young or older, or even if you don’t have PH, there are ways to contribute to research. You can participate in a clinical trial or enroll in the Pulmonary Hypertension Association Registry and contribute towards understanding PH or developing new therapies. You can advocate to support research. You can join a PHA fundraising event or make a donation to PHA to help raise money to advance science.
  3. Finding the right study or trial. There are multiple ways to find a study or trial that is right for you:
    • Talk to your PH health care team about research opportunities.
    • Reviews videos and resources in the PHA Classroom on clinical trials and research.
    • Join a research study in the PHA Research Room offered at the PHA International PH Conference and Scientific Sessions.
    • Search ClinicalTrials.gov, a database of clinical studies throughout the U.S. and in over 200 countries.
  4. Not all research involves new treatments. Some studies test new drugs or therapies, but others collect data or biological samples to better understand disease progression and the biology behind PH. The PHAR gathers patient information including demographics, medical history, diagnostic tests and medications with the goal of improving care, quality of life and research outcomes.
  5. Know the risks and benefits. Research may involve risks, such as side effects or receiving treatment that doesn’t work for you. But there are also potential benefits, such as playing an active role in your care, gaining more access to expert medical teams, accessing treatments not yet publicly available, potentially receiving a treatment that will work for you, and contributing to research that helps others.
  6. Patient safety comes first. Nothing is more important than patient safety. Before a potential drug can be tested in people, the U.S. Food and Drug Administration must review the data and approve it for further study to ensure the potential benefits outweigh the risks. Additional oversight comes from medical monitoring boards, institutional review boards, and data safety monitoring boards. All studies are continuously monitored and must report any health-related adverse effects.
  7. Healthy volunteers are important, too. People without PH also play a key role in PH research. In clinical trials, healthy volunteers serve as a control group, providing a baseline to help researchers measure changes caused by PH or the effects of investigative therapy. Many healthy participants find research to be a meaningful way to support the PH community.

Types of research and research data

Understanding the types of research and the data they produce is essential to understanding how progress happens in PH care. Developing safe and effective treatments involves different types of research, each playing a unique role in the drug development process, from laboratory discoveries to patient-based studies. 

  • Basic science research focuses on expanding scientific knowledge at the molecular, cellular and organ levels. It often involves laboratory experiments with chemicals, cell cultures or animal models. 
  • Clinical research focuses on people. It includes clinical trials, behavioral studies, patient registries and health outcomes research to assess treatments and understand disease in real-world settings. 
  • Translational research bridges the gap between laboratory findings and patient care, helping researchers turn scientific discoveries into real-world therapies, tools or procedures that can be tested in humans. 

Researchers use different types of research data to gather insights. These include primary, secondary, descriptive (observational), experimental, qualitative and quantitative data. Methods used in qualitative research include one-to-one interviews, focus groups, ethnographic research and case studies—all useful for gathering in-depth insights from smaller samples. In contrast, quantitative research collects measurable data using methods like survey research, correlation research and experimental research to identify patterns, test theories and generate statistically significant results. 

Participate in research and clinical trials

Learn more about clinical research, find a clinical trial and explore questions to ask your health care team when considering participating in research. 

Learn more about clinical trials
scientist conducting genetic test