Showing off copies of “Sofia Learns About Cancer Research” at the book launch on Sept. 25 at Roswell Park Comprehensive Cancer Center are, back row, from left, Hital Patel of Roswell Park; Renee Cadzow, PhD, of UB; Kara M. Kelly, MD, of Roswell Park and UB; Teresa Quattrin, MD, of UB; Andy Strohmeier, MEd, of UB; Naveed Shah of UB; and, front row, Roswell Park patients and family members.
Coloring Book Helps Explain Clinical Trials to Children With Cancer, Their Families
By UBNow staff
Published October 6, 2025
A new children’s book, “Sofia Learns About Cancer Research,” explains how clinical trials work for children with cancer and their families.
Written by a multidisciplinary team representing UB, Roswell Park Comprehensive Cancer Center and Oishei Children’s Hospital, the purpose of the coloring and activity book is to increase awareness among children and their parents about clinical research and how they themselves could be part of medical breakthroughs in Western New York and beyond.
“Sofia Learns About Cancer Research” developed from an earlier multidisciplinary effort that resulted in a coloring and activity book called Sofia Learns About Research. That book was published in 2019 by researchers at UB’s Clinical and Translational Science Institute (CTSI), who collaborated on the project to improve understanding among children and their parents about clinical research and how they could participate in it. Earlier this year, they published a paper about their efforts in the Journal of Clinical and Translational Science.
Experts Believed Pediatric Cancer Patients Would Benefit From Similar Tool
The new book evolved out of the shared recognition among experts at UB, Roswell Park and Oishei that children with cancer and their families would benefit from a similar tool. Pediatric cancer patients are offered the opportunity to participate in clinical registries and trials, which can be very beneficial to them.
“There is a lack of materials available that can explain, in simple terms, how children with cancer can participate in a registry or clinical trial and what it entails,” says Teresa Quattrin, MD, UB Distinguished Professor of pediatrics in the Jacobs School of Medicine and Biomedical Sciences at UB and an author. “It made so much sense to innovate and adapt Sofia’s story so children with cancer could benefit from it.”
“Clinical trials have led to significant advances in the care of children with cancer,” says Kara M. Kelly, MD, division chief of hematology/oncology in the Jacobs School’s Department of Pediatrics, the Waldemar J. Kaminski Endowed Chair of Pediatrics at Roswell Park and chief of the Roswell Park Oishei Children’s Cancer and Blood Disorders Program. “Thanks to clinical trials, nearly 85% of children with cancer survive more than five years.
“We are incredibly grateful to the parents of children with cancer who have put their trust in us by agreeing to enroll in these studies,” Kelly says. “At the same time, we are committed to helping children understand their role in clinical trials. We’re excited to share this new book with our patients and their families, and envision that it will be a great tool to better communicate the importance of these research studies in the care of children with cancer.”
A coloring and activity book, “Sofia Learns About Cancer Research” aims to increase awareness among children with cancer and their parents about clinical research and how they themselves could be part of medical breakthroughs.
“Sofia Learns About Cancer Research” will be given to patients who receive care through the Roswell Park Oishei Children’s Cancer and Blood Disorders Program, with a goal of increasing familiarity with and understanding of clinical trials.
“‘Sofia Learns About Cancer Research’ empowers children by offering developmentally appropriate explanations of medical research through engaging visuals and hands-on activities,” says Emily Capron, certified child life specialist at Roswell Park. “This book serves as a meaningful tool to help children understand their role in research and feel proud how they’re contributing to helping others.”
Co-authors with Kelly and Quattrin are Renee Cadzow, PhD, assistant professor in the School of Public Health and Health Professions, and Hital Patel and Amanda Teo of Roswell Park. Cadzow and Quattrin are co-directors of the CTSI’s Recruitment and Special Populations Core. Illustrations were done by Isabella Bannerman.
“We viewed Sofia’s journey through an ecological lens, a holistic perspective that is common in the social sciences and public health,” says Cadzow. “This perspective, along with the research coordination experience of co-authors Amanda Teo and Hital Patel, makes this story relatable to children, their families and providers."
Funding for the book was provided by the National Center for Advancing Translational Sciences of the National Institutes of Health under award number UM1TR005296 to UB.