In 2016, researchers at the University at Buffalo Clinical and Translational Science Institute (CTSI) embarked on a unique project centered around a fictional child with asthma named Sofia. The goal with “Sofia Learns About Research” was to introduce children and families to clinical research and the basic elements of clinical trials, and to ultimately lead to enhanced participation in clinical research.

Since those early days, Sofia has been the lead character in a coloring and activity book (published in 2017); appeared in an online version adapted for computer and tablet users (launched in 2019); and was featured in a gamified version of the story played by thousands of local children at Explore & More — The Ralph C. Wilson, Jr. Children's Museum (introduced in 2020).

In 2025 and 2026, Sofia embarked on new research adventures. In September 2025 came the publishing of “Sofia Learns About Cancer Research,” a project with researchers representing UB, Roswell Park Comprehensive Cancer Center, and Golisano Children’s Hospital. And in early 2026, the playable “Sofia” video game was added to the CTSI website.

“The ‘Sofia’ project is one of the CTSI’s most impactful and far-reaching initiatives,” says CTSI Director Sanjay Sethi, MD, SUNY Distinguished Professor, Senior Associate Dean for Clinical and Translational Research, Jacobs School of Medicine and Biomedical Sciences. “What is particularly exciting is that this work is an example of the type of multidisciplinary collaboration that is at the heart of the Buffalo Translational Consortium.”

“Sofia Learns About Cancer Research” was launched in 2025 with an event at Roswell Park; see photos from the event here. Co-authors of the book are:

• CTSI Recruitment and Special Populations Core Co-director Teresa Quattrin, MD, UB Distinguished Professor; Associate Dean for Research Integration, Department of Pediatrics, Jacobs School, Attending Physician, Division of Endocrinology/Diabetes, Golisano Children’s Hospital of Buffalo
• CTSI Recruitment and Special Populations Core Co-director Renee Cadzow, PhD, Assistant Professor, Department of Epidemiology and Environmental Health, School of Public Health and Health Professions, Research Associate Professor, Department of Pediatrics, Jacobs School of Medicine and Biomedical Sciences
• Kara Kelly, MD, Waldemar J. Kaminski Endowed Chair of Pediatrics, Roswell Park Comprehensive Cancer Center, and Division Chief, Pediatric Hematology/Oncology and Professor of Pediatrics, Jacobs School of Medicine and Biomedical Sciences, and Program Director, Pediatric Hematology/Oncology, Golisano Children’s Hospital of Buffalo
• Hital Patel, Scientific Research Project Administrator, Community Outreach and Engagement, Roswell Park Comprehensive Cancer Center
• Amanda Teo, who contributed to the project as a Clinical Research Coordinator while working in the Department of Pediatrics at Roswell Park, and is currently a second-year medical student at Liberty University College of Osteopathic Medicine

Both “Sofia” books were illustrated by acclaimed cartoonist Isabella Bannerman, who Quattrin says “was phenomenal in terms of trying to get little nuances down, and ensuring that the child who is reading the book could relate to the child in the book and the experiences that they are having. Working with a very good illustrator who understands the process was key.”

Quattrin calls the new book “a jewel of a joint enterprise,” adding that trust was an essential element of this multidisciplinary, multigenerational project. The latter detail was especially valuable, Quattrin says: “When people talk about team science, they do not emphasize enough that you have to mix the old with the new.”

Cadzow explains that “Sofia Learns About Cancer Research” was initiated by Roswell Park’s Kelly, and that Kelly, Patel, and Teo played a key role in developing the story.

“The Roswell team work closely with families and understand that process of approaching them about participation in a research study related to the treatment of cancer,” Cadzow says. “In addition to wrapping it around the topic of cancer, we wanted to keep it interactive and accessible to younger children.”

CTSI Special Populations Coordinator Andy Strohmeier, EdM, editor of “Sofia Learns About Cancer Research,” says “the way the partnership unfolded highlighted the importance of listening to what our partners ideas are, and what our partners need.”

Kelly called the development of “Sofia Learns About Cancer Research” a “wonderful collaboration” with the CTSI team: “We intentionally sought input from both children and parents throughout the development process to ensure the book addressed questions and concerns that matter most to families navigating decisions around participation in research studies related to pediatric cancer."

Now that the book is in use, Kelly says the “Sofia” team at Roswell Park aims to solicit viewpoints from the children and families they work with in the community.

“We are now seeking more in-depth feedback from parents and caregivers and will be presenting our findings to the Roswell Park Pediatric Cancer Research Advisory Council in September,” she explains. “We are particularly interested in whether the book helps spark conversations about a child's participation in research and builds trust and comfort with the research process.”

Kelly adds that “our long-term goal is to make Sofia Learns About Cancer Research available to pediatric cancer programs nationwide as a tool to support family-centered discussions about clinical research participation.”

As for what’s next for young Sofia, the CTSI team is considering several other concepts for Sofia’s research journey. As Cadzow puts it, “All of us hope to see Sofia’s research journey continue in new, exciting, and meaningful ways.”

Funding for “Sofia Learns About Cancer Research” was provided by the National Center for Advancing Translational Sciences of the National Institutes of Health under award number UM1TR005296 to UB.