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. Equally important, was the development of a database including etiological research variables derived from hospital based case control studies run in parallel to the registration as well as the initiation of a clinical database on the basis of information derived from the medical records and contributed through collaboration with the treating physicians (diagnostic methods, level of risk, treatment, follow-up, long term consequences) to be used for outcome research regarding children suffering the most common types of childhood cancer. Collection of biological samples in most of our cases further enhances contributions to international collaborations aiming to explore the interplay of genetic and environmental risk factors in the causation of childhood malignancies.

The ultimate goal is to provide information to the public and the scientific community on the incidence and time trends as well as to contribute 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. Indeed, data collected by NARECHEM-ST are a prerequisite for shaping national prevention strategies targeting modifiable risk factors as well as for the reduction of treatment related sequelae. That is why, special emphasis is put on disentangling 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 uploaded in narechem.gr under Reports in the interest of the public at large
  • Scientific publications aiming at identification and also quantification of the magnitude of risk factors in the context of meta analyses of published studies in which unpublished national data are also included
  • Creation of a Network of Childhood Cancer Registries in Southern and Eastern European (SEE) countries, which seem to suffer high childhood cancer rates; in this context, 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) in order to bypass statistical power issues
  • Future plans include:

  • Expansion of the nationwide registration to the remaining childhood tumors. Of note, registration on leukemias and CNS tumors was initiated in the context of two European Union co-funded projects, whereas registration of lymphomas, neuroblastomas and nephroblastomas 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.