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Participating in Clinical Trials
We want a cure for pulmonary hypertension or at least advancement in treatment options. How can we personally help? Have you participated in or considered participating in clinical trials? If so, which ones have you focused on?
The PH Association offers a clinical trial finder. “This tool to help participants learn more about research ongoing in PH. Use the filters below to narrow the search results to fit your personal needs. Each listing describes current research, who qualifies to participate, and whom to contact for information.”
Is this something you would use to take a more pro-active role in clinical trials?
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4 Replies
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I’ve looked for PH clinical trials for healthy volunteers. Unfortunately, there aren’t any within driving distance to me. If I could find one (especially for family members of patients), I would sign up in a heartbeat. Anything that could help future PH or CTEPH patients.
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I participated in a clinical trial last year for women with PH. It was so interesting. The doctor was doing research on the effects of different hormones in pre-menopausal women and how it impacted the heart and lung function. They started the study because a lot of their women patients were complaining of increased shortness of breath around their period time. Not sure what exactly the results were of the study but I would be interested to find out the connection between hormones and the heart and lung function! It was really great to be a part of it and definitely something I would do again. I was also part of a drug trial for treatment of CDIFF that my own GI doctor helped create.
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Brittany, that’s the only thing about the clinical trials, is that you don’t always get to follow the progress and end results. Still, you have to trust that your participation is of value. I think they are important. The one about different hormones sounds very interesting. I hope you receive some future follow-up on it. Maybe an article will be published on the results.
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I wanted to share a recent column by fellow PHer and columnist Anna Jeter. Anna writes about things to consider before one agrees to participate in a clinical trial.
Clinical trials are essential for improved treatments and, eventually, a cure for PH. However, Anna reminds us to weigh the pros and cons and not to forget the personal impact it may bring. You can read more about this thought-provoking column here.
Do you have anything to add after reading Anna’s column? Let’s talk about this.
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