Dear PH Community,
In 1994, just three years after the Pulmonary Hypertension Association (PHA) was founded by three patients and a caregiver, PHA held its first International PH Conference. Its goals were simple, but powerful and, in fact, are still key to Conference’s success today – to have patients gain information from experts, help physicians and nurses better understand pulmonary hypertension (PH) and patients’ problems from patients, connect health care providers (HCP) and patients with each other, and assist researchers gathering data. This last goal resulted in the establishment of the PHA Research Room at Conference.
The wisdom, power and foresight of PHA’s founders bringing health care providers, patients, family members and researchers together in one place and establishing the PHA Research Room has contributed to, and quickened, many new discoveries about PH. One major example, based on work conducted in the first PHA Research Rooms, was published in a peer-reviewed journal in 2000. This pioneering research found the link between what was then called Familial Primary Pulmonary Hypertension and mutations in the BMPR2 gene. As a result, the PHA Research Room has been a part of Conference ever since and the PHA has been working to catalyze research for a cure.
This year PHA is proud to announce it has taken another important step in helping accelerate and catalyze research into PH that will one day find a cure. Through our ongoing work with patients and the entire PH community, we have learned that one of the best ways in which PHA can support our patient community is to provide an easier way for them to learn about clinical trials and how to participate in them.
That is why, this month, we launched the PHA Clinical Trial Finder (CTF). The PHA CTF provides quick access to the latest information about current PH clinical trials and details on how individuals can participate. This tool will help you learn more about research ongoing in PH and includes filters to narrow the search results to fit your personal needs including location and type of trial. Each listing describes current research, who qualifies to participate and contact information.
Your privacy is assured as no personal information can be collected through this tool and the information presented on this site comes directly from ClinicalTrials.gov, a service of the U.S. National Institutes of Health (NIH). The PHA CTF updates regularly to ensure you view the most current information available. PHA recommends you use the information in this resource to begin a conversation with your PH specialist about whether or not participating in research is right for you.
By launching the PHA CTF, PHA is looking to integrate patient perspectives and patient/HCP interactions into PH research, as well as PH treatment and health-related quality of life decisions.
It is our hope that by using PHA’s CTF you can expand your knowledge of and involvement in clinical trials that will bring us closer to a cure.
As always, I welcome your thoughts and comments on the new PHA CTF and on the topic of patient perspectives and patient/HCP interaction at gro.noitaicossAHP@AHPgnoWdarB.
Brad A. Wong
PHA President & CEO