Research Participant Testimonials
Having the opportunity to participate in research studies has been such a blessing. Throughout my seventeen years of life, I’ve been in many studies.
Whether it’s just filling out a quick survey, giving blood work or a sputum culture, or having to do months of test- ing out a new medicine, whenever I am asked to be in a study, my answer is always yes. The only way new drugs can get FDA approved and get out onto the market is for it to go through the clinical trials process. Clinical trials can’t happen and new medicines that can potentially im- prove the health of cystic fibrosis patients can’t be made available without “people participation”. That’s why I say yes to every study I am eligible and asked to be a part of.
Living with a life threatening disease is hard work. I can go from 100% lung function one week to 80% the next. I am compliant with my daily treatments but that doesn’t guarantee that a new bacteria won’t enter my lungs. When
Members of the CF Parent Advisory Council are working to identify areas in which improvements can be made to better support patients with CFRD. If you have suggestions, or want to share your experience, we want to hear from you. Either go to the CF Center website (http://cfcenter.stanford.edu), where there is a link on the homepage to leave anonymous feedback, or email Siri Vaeth, Council Lead Parent, at firstname.lastname@example.org. The input of Center families is encouraged.
I’m asked to test out a new drug, I feel like a kid on Christmas. Even though I don’t know if I am getting placebo or the real deal, it’s still just as exciting knowing that I could be receiving a medicine that could possibly change my life. If given the opportunity to change someone’s life forever, wouldn’t you do it? Participating in research studies is the best decision I have ever made and I hope that maybe just one person will read this and change their mind about be- ing a part of changing and improving lives.--Julie Phillips
My son Brian was in his first research study before he turned 2. Not only did I want him to benefit from using TOBl at a young age, I wanted to contribute back to the CF community. It is through studies that new therapies are developed, and these therapies add years to Brian’s life. By being in a research study, Brian can pass that same gift on to others.
Brian is now 14 and continues to participate in studies when he’s eligible. For each study, coordinators explain the process not only to me, but also to Brian. The coordinators then patiently answer our questions until we are completely satisfied.
When concerned about possible risk to Brian’s health, his doctors and coordinators always address our concerns. The care givers want the best for their patients; they immediately end a trial at slightest indication of harm. Brian is regularly reminded that he is free to end the study at any time.
Research coordinators work alongside doctors to keep all patients in the best of health. Working together, we move closer to our common goal, finding a cure for cystic fibrosis. ---Linda Burks
Being in a clinical trial is like getting to be a scientist. You get to see some cutting-edge medical equipment and procedures, and you can ask all the questions you want about it (and get all the answers!). They explain everything that’s going to happen so there are no surprises. It’s great to feel like you are helping others with CF (or maybe even you, someday) because of your participation. Volunteers like us make clinical trials possible. —Laura Steuer
Volunteering for a clinical trial is a great experience. The staff answered all my questions and explained everything that was going to happen. I was never worried or concerned because their support made each step easy. The science and technology underlying potential new treatments for CF is just phenomenal; it’s kind of thrilling to think that I was part of it. And, above all, it’s tremendously satisfying to know that someday many other patients with CF (or even myself) may benefit from these treatments. —Anonymous
"Our son has CF. We will to do everything we can to help find a cure for this illness. By participating in these studies, we hope the doctors get a little bit more understanding of CF and get one step closer to the cure. Not only does it feel good to help with these studies but we also felt assured our son was getting extra medical attention by the constant check ups and monitoring. The staff was always perfect in explaining what the process was and always accommodated our schedule where they could. If we ever had any questions or concerns, we were able to contact the staff directly - and really at anytime of the day or night. We have been part of 3 studies now and we are always open for more. Again, anything to help find a cure...."--Anonymous