Participating in Clinical Trials

This topic contains 3 replies, has 3 voices, and was last updated by  Colleen Steele 1 month, 2 weeks ago.

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  • #19574
     Colleen Steele 
    Keymaster

    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?

    https://trials.phassociation.org/

  • #19601
     V.R. Peterson 
    Participant

    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.

  • #19604
     Brittany Foster 
    Keymaster

    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.

  • #19642
     Colleen Steele 
    Keymaster

    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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