The Nordic Society of Paediatric Haematology and Oncology (NOPHO), established in 1984, has been a successful and productive society leading to improved survival rates of childhood leukemias, Acute Lymphoblastic Leukemia (ALL) and Acute Myeloblastic Leukemia (AML).
ALL is the most common cancer among children, representing 21% of all childhood cancers in the Nordic countries. Cure rates of ALL now exceeds 90 % in the Nordic countries, which is among the best survival rates of childhood ALL in the world.
A major challenge, aside from curing ALL, is the substantial burden of acute toxicities and late effects. Several research groups, including our own, are uncovering underlying mechanisms and intervention points in the field of acute toxicity. However, the current understanding of long-term survivor health, underlying mechanisms and overall impact of quality of survival remains limited. With a growing population of childhood ALL survivors, attention to quality of survival is called for.
The Acute Lymphoblastic Leukemia Survivor Toxicities And Rehabilitation (ALL-STAR) study is establishing a Nordic platform for a population-based ALL survivor cohort in order to systematically collect somatic and psychosocial follow-up data in this well-described cohort. This unique data platform will allow novel association studies regarding treatment-related late toxicity.
1. To establish a Nordic cohort of NOPHO ALL survivors
3. To quantify the objective and subjective somatic and psychosocial burden of treatment-related late effects in NOPHO ALL2008 survivors
4. To detect subclinical late effects and explore the clinical implications of these.
5. To identify early risk markers of treatment related late effects in NOPHO ALL2008 survivors.
Consenting survivors will be included in a follow-up study, including a questionnaire (somatic, psychosocial and socioeconomic end-points) and different clinical examinations evaluating organ function in survivors. Genotyping will be performed. A NOPHO ALL-STAR database will include these survivor data and be coupled to the existing NOPHO database to allow association studies, uncovering disease trajectories and risk patterns.
A better understanding of treatment-related late effects will allow risk-based prevention of these, impacting a large proportion of cALL survivors, by increasing both survival years and quality of life with socioeconomic benefits to the individual survivor and society.