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Volunteer Advocate
cf insights cf insights

Clinical trials: A CF parent’s perspective

My name is Lina Bhardwaj and my 13-year-old daughter Rianna lives with cystic fibrosis.

Rianna was diagnosed at two months old and luckily, she’s been relatively healthy her whole life. She had some weight gain issues a few years ago, so we opted for a G-tube, but aside from one unplanned hospital stay, she’s been on the right track.

My daughter is very active, and I think that’s really helped maintain her health. She loves swimming, running, and is working towards her second degree black belt in taekwondo! She amazes me with her energy levels and resilience.

A decision my husband and I made early on to benefit both Rianna and the cystic fibrosis community was for her to participate in clinical trials. Rianna has participated in one clinical trial for every year of her life. I know there are so many CF families like us who want to learn more about clinical trials, so I wanted to share my family’s experience with clinical trials, in hopes it will provide the insight they need to move forward:

  1. Time commitments – between managing parenting, work, after-school programs, CF treatments, and life, adding more to our schedule was daunting at first. I was really surprised to learn that participating in a clinical trial isn’t as big of a time commitment as people think. Sometimes we even coordinate our participation with clinic visits, making it really convenient.
  2. Health benefits – the idea that my daughter’s health can benefit from participating in a trial is a huge driving force for us to continue participating. Rianna was lucky enough to directly benefit from two of the trials she’s participated in. We actually continued on one of the treatments via a compassionate care program post-trial that I don’t know we would otherwise have access to. It’s a huge relief to know that there was a positive outcome as a result of her participation.
  3. Knowing what I’m signing up for – something that really impressed me when we began clinical trials was the amount of transparency in the process. The teams were very good at explaining everything in detail so we were fully aware of what we were in for. I felt we were selected for a reason and there was always a goal we were working towards. I never felt out of the loop or that we were wasting our time (or that our time wasn’t appreciated)!
  4. Helping our small community – the CF community is small, but special. While a treatment in a trial might not work for Rianna, it could work for others, and that’s really important when we have such a small population. At the end of the day, we all need to do our part to help find a cure or control, and this is one way we help.
  5. Empowering my child – Rianna has learned so much about her health and cystic fibrosis through participating in clinical trials. Her participation is teaching her values that I think are really important. It’s teaching her to advocate for her health and her community, and it’s instilling in her a sense of responsibility, advocacy and proactivity!

To find a clinical trial that’s right for you, visit cysticfibrosis.ca/clinicaltrials for more information.