Grant Number:	1R01CA316855-01 Interpret this number
Primary Investigator:	Mack, Jennifer
Organization:	Dana-Farber Cancer Inst
Project Title:	Family-Centered Risk Information and Screening Education to Support Children with Genetic Cancer Risk
Fiscal Year:	2026

ABSTRACT More than 14,000 children and adolescents are diagnosed with cancer in the United States each year, and >10% have a genetic predisposition to cancer, creating ongoing risk for new cancers during their lifetimes. Yet family- based pediatric models for cancer risk communication are lacking for this growing population of children. Children require unique considerations when communicating cancer risk due to wide variability in developmental and emotional maturity. In addition, many live with devastating personal family histories with prior cancers, family illness, and loss. The goal of this project is to develop, implement and test a family-specific intervention for cancer risk communication, to help children and families live with a diagnosis of genetic cancer risk, engage in life- saving screening, and develop strategies for effective coping. Building on our prior success in developing a cancer risk communication intervention for adolescents and young adults (AYAs), our interdisciplinary team of experts in health communication, cancer genetics, oncology, and pediatric psychology from 4 cancer risk programs will enhance the existing intervention to create Family RISE (Risk Information and Screening Education), a web-based intervention designed to communicate genetic information to parents and children in developmentally appropriate ways. The intervention will include information for parents about cancer risk and screening, management of their own distress, and talking with children about the diagnosis and future risks. For children aged 12-17, information will be accessible independently, as in our previous AYA intervention; for younger children, parents will receive guidance on deciding collaboratively with children about whether, when, and what to share. Iterative user testing with qualitative feedback from parents and children will be used to optimize Family RISE prior to conducting a type I hybrid implementation effectiveness trial and assessing the impact of Family RISE on parents’ knowledge of cancer risk and screening, distress, and follow up for recommended care. We will also explore the impact of Family RISE on children’s knowledge and distress as well as family communication. Our aims are: Aim 1: To refine Family RISE to meet the needs of parents and children with genetic cancer risk. Aim 2: To implement Family RISE as a randomized trial at 4 sites; evaluate its impact on parent knowledge of cancer risk and recommended screening (primary outcome) and parent psychological distress and follow-up for recommended care at 1 year (secondary outcomes); and assess implementation factors. Aim 3: To explore children’s experiences with Family RISE, including family communication about cancer risk and screening as well as children’s distress and information needs. If successful, this study will yield a scalable, patient- and family-centered intervention to improve cancer risk communication for children and families living with genetic cancer risk, with a goal of cancer risk reduction.





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