Aug 17, 2015

Are Clinical Trials Safe for Children?

Does your child have an inherited eye disease? If you had the chance, would you enrol her or him in a clinical trial that was testing a new gene therapy or stem cell treatment? This may not be an easy question to answer, but it is extremely important because gene and stem cell trials are happening right now, and more are on the way.

In June, we were thrilled to announce the official start of Canada’s first clinical trial involving a gene therapy for the inherited eye disease, choroideremia. As funders of this study, we are proud that this collaborative research team includes not just scientists and clinicians like Dr. Ian MacDonald, but also researchers like Dr. Tania Bubela and Stephanie Kowal from the University of Alberta, who are focused on the ethical and policy dimensions of including children in clinical trials.

Getting the science right is only part of the story of bringing new treatments to the people who need them. Developing new therapeutic options requires people working in many different areas on an array of related problems, such as:

• How should we decide who is eligible to participate in a clinical trial?
• Should these criteria be different for children?
• What kinds of risks are okay for children to encounter during a clinical trial?

To better prepare for potential clinical trials in the future involving children, Dr. Bubela and Ms. Kowal are studying how affected families think about clinical trial opportunities. By talking to parents about their experiences, ideas, feelings, hopes and expectations, they are aiming to learn more about parents’ perspectives. Ultimately, their goal is to improve communications about clinical trials to make them more successful for everyone involved.

If you are a parent of a child with a genetic eye disease, we want your perspective! Please TAKE ACTION today: contact Mary Sunderland, Director of Research & Education at Fighting Blindness Canada to learn how you can get involved.