Weill Cornell Medicine received a five-year, $5 million grant from the National Cancer Institute, part of the National Institutes of Health, to develop innovative support strategies for an understudied group of cancer patients: adolescents and young adults (AYAs). For these individuals, cancer survival often marks the beginning of lifelong challenges from treatment effects.
Every year, over 80,000 people aged 15 to 39 are diagnosed with cancer. And more than 2 million young survivors are living today, thanks to medical breakthroughs that have improved outcomes. They face unique stressors as they look ahead to continuing their education, launching careers and starting families.
"The needs of adolescent and young adult cancer survivors differ greatly from pediatric and adult populations," said principal investigator Dr. Shoshana Rosenberg, associate professor of population health sciences at Weill Cornell. "We want to learn from patients and use this information to guide clinical care."
Rosenberg and her colleagues aim to build and engage a cohort of 2,000 AYA cancer survivors in New York City to characterize the short- and long-term effects of newer drugs, including biological treatments and immunotherapies. Their research will focus on challenges many young survivors face, such as fertility and sexual health concerns, as well as financial stress. Beyond finding ways to understand their experiences, the researchers will aggregate data to inform new avenues for support.
By identifying those at risk for long-term complications and barriers to accessing supportive care, the study aims to develop earlier interventions and improve available resources.
To simplify how researchers connect with patients and gather data, Rosenberg and her team are building a novel mobile app tailored to this digitally native population. The project is designed to include people from many different backgrounds and communities.
Survivors will use the app to answer surveys and share health information over time. The app can also gather sensor-based data, such as activity or sleep patterns, helping researchers paint a more complete picture of lives after cancer treatment. In addition, participants can provide biological samples and health data through their electronic medical records, which may help scientists identify early warning signs of future health problems.
The researchers are exploring ways to use the platform to push supportive care strategies and potentially help build community among the participants.
Rosenberg believes the study will lead to more support for this group throughout their cancer journey and shape an approach that may optimize outcomes for future patients.
"I hope that this research can help us resolve some unanswered questions and ultimately improve how we care for young people diagnosed with all types of cancer," Rosenberg said. "The end goal is to inform care, including better communication with patients and their providers."
Joining Rosenberg in the study are co-principal investigators Dr. Danielle Friedman, attending physician at Memorial Sloan Kettering Cancer Center, and Jeanine Genkinger, associate professor of epidemiology at Columbia University Mailman School of Public Health.
Lauren Barack is a freelance writer for Weill Cornell Medicine.
