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Clinical trials have been essential to the great progress that has been made toward curing childhood cancer. New personalized therapies in current clinical trials promise to be more effective and less toxic than drugs in the past. But, to truly understand what a child finds most bothersome and provide the best quality of life possible, we need to ask the child directly. No one has done this for children receiving personalized therapies for cancer that has returned or not responded to chemotherapy, a group where quality of life is especially important. To answer this question, a team from Seattle Childrens Hospital/University of Washington and Boston Childrens Hospital/Dana Farber Research Institute designed this study. Dr. Steineck and colleagues are using surveys, especially made for children, to learn what children feel when they are treated on a clinical trial and what bothers them the most. This will help doctors find better ways to recognize and treat these symptoms, alleviate suffering, and improve how children view their quality of life. Knowing this is important for families to understand what their child may experience with treatments used on todays clinical trials and guide them in their very important, but difficult decision about the care their child receives.

This grant is funded by and named for Friends for Hope, a St. Baldrick's Hero Fund created to honor Morgan Loudon and celebrate her strength and determination as a cancer survivor. Morgan was 9 years old when she was diagnosed with a rare rhabdoid tumor and today she has no evidence of disease. With this fund, the Loudon family hopes to rally family and friends to “battle on” in the search for cures and better treatments.
This grant was awarded at Seattle Children's and transferred to Medical College of Wisconsin.