Why the Nationwide Registry for Childhood Hematological Malignancies and Solid Tumors (NARECHEM-ST) was created

NARECHEM-ST, a specialized childhood cancer registry, was created in respond to the need for readily available nationwide registration data serving surveillance purposes. Linked to the registration is a database including etiological research variables derived from hospital-based case control studies run in parallel to the registration and a clinical database entailing information on diagnostic methods, level of risk, treatment, follow-up and long-term consequences provided by treating personnel aiming at outcome research on children suffering from the most common types of childhood cancer. Collection of biological samples, facilitated by physicians, in most of cases further enhances the potential for contributions to international collaborations aiming to explore the interplay of genetic and environmental risk factors in the causation of childhood malignancies.

Our ultimate goal is to provide information to the public and the scientific community on the incidence and time trends of the disease in addition to contributing to the elucidation of the etiology of common childhood cancers. International comparisons in disease occurrence and outcomes are of prime interest along with identification of treatment and non-treatment related interventions aiming at improving survival and quality of life among childhood cancer survivors. So far, data collected by NARECHEM-ST can also be used for shaping national prevention strategies targeting modifiable risk factors as well as for the reduction of treatment related sequelae. Of special interest is to disentangle adverse impacts of socioeconomic differentials and single parenthood in survival and other end points of the disease.

Results are being communicated through:

  • Updated Annual Reports on the incidence and survival from specific cancers (periodical uploads: narechem.gr under Reports) in the interest of the public at large
  • Scientific publications aiming at identification and quantification of the magnitude of risk factors using raw data along meta analyses of published studies
  • A Network of Childhood Cancer Registries in Southern and Eastern European (SEE) countries, which seem to suffer high childhood cancer rates; collaboration with other Cancer Registries is also sought allowing comparisons of descriptive epidemiological data with those of SEER, USA
  • Collaboration with international consortia, such as the Nordic Society of Paediatric Haematology and Oncology (NOPHO), the Childhood Leukemia International Consortium (CLIC) and the international multi-centric case-control study on risk factors for brain cancer in young people (MOBIKIDS) allowing bypass of statistical power issues
  • Future plans include:

  • Gradual expansion of the nationwide registration to more rare childhood tumors until a government-initiated registry is available to delivers results to interested scientific institutions. Of note, registration on leukemias and CNS tumors were launched in the context of two European Union co-funded projects, whereas registration of lymphomas, neuroblastomas, nephroblastomas, liver tumors and sarcomas sprang as a byproduct of the collaboration with the hematology-oncology departments in Greece
  • Completion and validation of the clinical database including cytogenetics as to provide comparable follow-up information regarding the long-term health impact imparted by the most common types of cancer and/or therapeutic regimens used in children.