AYA Cohort to Enhance Survivorship in NYC (ACES-NYC) - More than 80,000 new cases of adolescent and young adult (AYA) cancers are diagnosed annually in the United States. Alarmingly, the incidence of AYA cancers is expected to continue to rise in the coming years leading to a growing population of AYA survivors. Due to their young age at diagnosis, AYA survivors experience an extended survivorship during which they often contend with a spectrum of late and long-term effects of treatment, many of which have not been well-characterized in AYAs treated in the contemporary treatment era where novel therapies, including newer targeted agents, are increasingly used. Further, individuals representing different ages, diagnoses, and socio-economic backgrounds are often not well represented in AYA survivorship research. To address this gap, and given rates of AYA cancers are higher in New York City (NYC) compared to overall rates in the United States, we are proposing to establish the AYA Cohort to Enhance Survivorship in NYC (ACES- NYC), a prospective cohort that will enroll and engage 2000 AYA cancer survivors treated at three NYC cancer centers (Weill Cornell Medicine, Columbia University Irving Medical Center, and Memorial Sloan Kettering Cancer Center). In this cohort, we propose to characterize adverse short and long-term effects in the contemporary treatment era across a wide spectrum of AYA cancers, focusing on three central issues that uniquely impact AYA survivors: 1) fertility outcomes/reproductive health; 2) endocrine dysfunction (hypo/hyperthyroidism, obesity, diabetes); and 3) sexual functioning. Leveraging a mobile health application (app) platform that allows for linkage with the medical record, we will collect comprehensive treatment and clinical data, patient-reported data via serial surveys, sensor-based data collection enabled by the app, in addition to biospecimen acquisition. We will aim to: 1) determine the short and long-term impact of treatment on fertility outcomes, sexual health, and endocrine function, 2) determine demographic and clinical factors associated with underutilization of follow-up care related to reproductive, psychosocial, and endocrine health to inform timing and targets for intervention, and 3) develop, employ, and evaluate novel methods of data collection and engagement, in partnership with community-based stakeholders and patient advocates, to optimize recruitment and retention and to facilitate sharing of research results and survivorship resources. Together with community, patient, and research partners, our team will build and leverage ACES-NYC to shed light on numerous gaps in our knowledge of AYA cancer survivors’ short- and long-term experiences and needs, with a focus on improving survivorship care delivery and outcomes in this population.
