Feasibility of a registry for standardized assessment of long-term and late-onset health events in survivors of childhood and adolescent cancer

Childhood and adolescent cancer survivors are at risk for chronic medical conditions. Longitudinal studies help to understand their development and course. We hypothesize that collecting follow-up data according to the modified CTCAE criteria and embedded in regular care, is feasible and results in a rich database. We recruited 50 Swiss survivors treated at our institution between 1992 and 2015, who completed their treatment and are still alive. Information on cancer diagnosis, treatment, and medical conditions from follow-up visits, graded according to the modified CTCAE criteria, were added in the database. We described the cohort, assessed the prevalence of medical conditions at the most recent visits and the time needed for data entry. Survivors had a median age of 10 years at diagnosis with 16 years of follow-up. 94% of survivors suffered from at least one medical condition. We registered 25 grade 3 or 4 conditions in 18 survivors. The time needed for data entry at enrollment was < 60 min in most survivors and much less for follow-up visits. Standardized assessment of medical conditions is feasible during regular clinical care. The database provides longitudinal real-time data to be used for clinical care, survivor education and research.