WHAT YOU NEED TO KNOW ABOUT PARTICIPATING IN RESEARCH
Fact 1: Patient are crucial for research success.
Scientists and clinicians need you as a partner in research studies and clinical trials. No one knows pulmonary hypertension (PH) like those who live with it every day. You can provide insight about PH that researchers and physicians do not have. Every treatment that exists today is the direct result of individuals who have stepped up to volunteer for research. You are key to paving the path towards a cure.
Fact 2: There are many ways for you to support research.
Whether you are newly diagnosed or have had PH for years, whether you 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 registry (PHAR) 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 the science.
Fact 3: There are multiple paths to find a research study or clinical trial that is right for you.
- Talk with your PH health care team about opportunities for research participation.
- PHA Clinical Trial Finder is a resource tool provided by the Pulmonary Hypertension Association to help you learn more about PH research and find a study that fits your personal needs.
- PHA Classroom has videos and resources that provide information about clinical trials and research.
- Participate in a research study in the PHA Research Room at PHA International PH Conference and Scientific Sessions.
- ClinicalTrials.gov is a searchable database provided by the U.S. National Library of Medicine of clinical studies throughout the U.S. and in more than 200 countries around the world.
Fact 4: Not every study tests a new treatment
Some studies test a new drug or therapy, but others collect data and samples to better understand disease progression and the biology that cause PH. The PH patient registry, Pulmonary Hypertension Association Registry (PHAR) collects from PAH and CTEPH patients information such as demographics, medical history, diagnostic tests, and medications with the goals towards improving patient care and quality of life and supporting PH research.
Fact 5: There are risks and benefits to participate in clinical research
While there are risks inherent in research such as side effects or adverse reactions to treatments or receiving a treatment that doesn’t work for you, participation provides benefits. Benefits include playing a more active role in your own health, gaining added access to your expert PH medical care team, accessing new treatments currently not available to the public, potentially receiving a treatment that will work for you, and helping others by contributing to medical research.
Fact 6: Patient safety is the number one priority
Nothing is more important than patient safety in developing new treatments. Safety measures are in place to minimize any risks to patients who participate in research. Before potential drugs can be tested in people, data must be reviewed and approved for further study by the U.S. Food and Drug Administration (FDA) to make sure the possible benefits outweigh the risks. As part of the patient safety process, there are many other groups of experts who review research studies and clinical trials including medical monitoring boards, institutional review boards (IRBs), and data safety monitoring boards (DSMBs). All patient studies must be continually monitored for and report on any adverse effects to a person’s health that result during the research study or clinical trial.
Fact 7: Healthy volunteers are needed to participate in research
People who do not have PH may be surprised to learn that they are important for PH research. In clinical trials, healthy control volunteers provide an objective standard for scientists and clinicians to measure against any changes that take place due PH or the effects of the investigative therapy. Many people who participate in clinical research studies find it an empowering way to support the PH community.