• Clinical Trials

    Posted by jenny-livingston on January 6, 2020 at 10:04 am

    In 2013, someone approached me in clinic and asked if I wanted to participate in a clinical trial. I didn’t have a clue what I was getting into, but the appointment schedule wasn’t too rigorous and I didn’t have much else going on at the time, so I agreed.

    The first trial was very short-term, but it led to other amazing opportunities. I was soon asked to participate in a trial for a CFTR modulator, which ended up being Orkambi. (I wrote about how this trial changed my life here.) Since then, I’ve participated in clinical trials as often as I am able to. It’s one of my favorite things, which might sound a little funny, but it’s true!

    I love being able to participate in research! I’ve learned how invaluable the results of these trials are, and it feels good knowing that I’m helping make a difference. Also, I see my doctor more regularly when I’m in a study, which means we keep an even closer eye on my health, and it’s helped strengthen our relationship and mutual trust.

    If you’re interested, you can use the Clinical Trials Finder on cff.org to find a trial in your area. Or talk to someone at clinic to see if there are trials taking place at your center.

    Have you participated in clinical trials? If so, what has your experience been? 

    chris-roach replied 4 years, 5 months ago 3 Members · 3 Replies
  • 3 Replies
  • jodie

    January 7, 2020 at 10:46 am

    I am a nurse who has coordinated clinical trials for my entire career, for the last 14 in CF. It’s been the best job ever, and I always try to make it fun for my participants (and I’d say this is likely true of the vast majority of people who coordinate studies). Plus, when the drug works, it is so darn exciting for us, too!

  • christina-kolassa

    January 7, 2020 at 4:23 pm

    Participating in Clinical Trials at this time in history is life-changing! I believe participation in trials has an even greater impact on finding a cure than fundraising at this point. The drugs being introduced now WILL CHANGE YOUR LIFE! My son participated in the Trikafta trial and he’s a different person. His life has been renewed. It’s provided hope and a future for him and his sister who also has CF. Don’t be afraid! Please participate! We need you!

  • chris-roach

    January 9, 2020 at 4:35 pm

    I am also a Research Coordinator and wondered if you would be willing to allow this blog to be shared in our Center Newsletter? Some patients seem resistant to starting a trial but often once we get someone to do one they become frequent enrollees for future ones. Looking for ways to get people to see that it is okay to try one!

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