The first longitudinal population-based study in the AYA oncology population in the United States was conducted in 2010. Dubbed "AYA HOPE," the research was funded in 2009 by the NCI, with support from the Lance Armstrong Foundation. It was conducted with help from seven NCI Surveillance, Epidemiology, and End Results (SEER) external web site policy cancer registries: Los Angeles, Seattle-Puget Sound, Iowa, Louisiana, Detroit, Northern California, and Greater California. A follow-up study concluded in July, 2010.
Many studies have since been completed using data from this 2010 study. However, no large longitudinal national study has been conducted since the HOPE 2010 research.
CAYACC intends its 2018 national patient survey to serve as a significant next benchmark study of the AYA cancer patient population. Our goal is to see what positive changes gave taken place since 2010, what challenges still exist, and where our next step might best be focused to advance needed progress in this field.
AYA cancer research has been constrained by the population's exceedingly low participation in a relatively few number of clinical trials available to them. In addition, data on psychosocial factors specific to this population (e.g. impact of cancer on education, employment, social and family issues, fertility preservation, etc.) is lacking.
Inconsistency in care, coupled with insufficient research data, have prevented the development of guidelines for treating and monitoring AYAs with cancer. Few tools exist to measure the efficacy of treatment and psychosocial interventions delivered in diverse settings.*
* National Cancer Institute