Whether diagnosed as a child (< age 15), adolescent, or young adult (AYA, age 15-39), young survivors of cancer face many challenges regarding their long-term outcomes. This presents a timely opportunity for the CCDI to clarify what this growing population will need in the future, but we must first clearly understand the target population for this initiative. Clarity is needed whether the intention of the CCDI is to provide data regarding cancer diagnosed in children (< age 15), adolescents (age 15-17), or young adults (age 18-39)? If it is restricted to childhood and adolescent cancers, young adults will be excluded. Ideally, the CCDI would equally prioritize those diagnosed at any age under 40 and continue data collection throughout their entire lives as survivors.
We suggest an investment in health services and policy research regarding survivorship care. First, enhanced data collection using mechanisms already in place could be targeted. For example, SEER-Medicare data provide detailed information about beneficiaries over 65 with cancer, including claims, from when coverage begins to death. SEER and state cancer registry data for those diagnosed with cancer under 40 could be linked with other datasets, such as the NHIS, MEPS, NIS, and others, to provide a more robust data infrastructure. Second, studies are needed to obtain data that are nationally-representative (registry-based) for AYAs. Compared with childhood survivors, little is known about AYA survivors. Third, the impact (and necessity) of lifelong surveillance among AYA survivors needs continued support. Perhaps, this can be done in a manner similar to the Center for International Blood and Marrow Transplantation Research, which is legislatively codified to collect outcomes data on all patients who have received an allogeneic stem cell transplant, in addition to leading and conducting studies, providing access to outcomes data and repository samples, facilitating training, and many other roles.