NARECHEM-ST - Nationwide Registry of Childhood Hematological Malignancies and Solid Tumors

Nationwide Registry of Childhood Hematological Malignancies and Solid Tumors (NARECHEM-ST)

Head: Eleni Petridou MD
Pediatrician
Professor of Epidemiology and Preventive Medicine, National and Kapodistrian University of Athens
President, Hellenic Society for Social Pediatrics and Health Promotion.

The development and maintenance of the Registry is a joint venture of the Department of Hygiene, Epidemiology and Medical Statistics of the National and Kapodistrian University of Athens Medical School and the Hellenic Society for Social Pediatrics and Health Promotion (HSSPHP) serving surveillance purposes, as well as etiological and outcome research endeavors for childhood (0-14 years) malignancies across Greece. As of 2017, included in NARECHEM-ST are nationwide data for: Leukemias Lymphomas CNS tumors Neuroblastomas and Nephroblastomas (Wilm’s tumors)

Active registration is achieved in close collaboration with the treating physicians in all seven Pediatric Hematology-Oncology Departments, pediatric-surgeons, neurosurgeons, pathologists, radiologists and radiotherapists as well as specialists in the two Bone Marrow Transplantation Units across the country; past or present NARECHEM-ST collaborators are listed in Who we are section. Historically, the pilot phase of NARECHEM was initiated in 1980 with retrospective collection of information on a limited number of variables among cases with childhood leukemias and lymphomas. Subsequently, in the context of a European Union funded case control study, prospective registration was employed during the two-year period (1993-1994) along with detailed interviews on risk factors for the development of childhood leukemia including electromagnetic fields.

Nationwide case control study -Database: During the period 1996-2016, the nationwide registration of primary (incident) diagnoses of childhood leukemias and lymphomas run along with a case control study comprising also age- and gender-matched hospital controls. The database comprises information on ~500 variables derived from in person interviews with index cases and/or guardians as well as collection of biological samples, clinical and survival data archived in collaboration with the treating physicians (available for the majority of the cases). Information on several clinical variables including subtypes, immunophenotypes, cytogenetics, treatment specimens, long-term follow-up and survival has been successively added. Collection of information on history of myelodysplastic syndromes, second malignant neoplasms or delayed relapses and late effects of therapy has also been pilot-tested in collaboration with most treating physicians. Expansion to active registration of primary (incident) malignant and nonmalignant CNS tumors was initiated on August 1, 2009 in the context of the EU project MobiKids. During the period 2010-2016 the nationwide registration run along with a case control study comprising age- and gender-matched hospital control. A rich database derived from in person interviews with index cases and/or guardians as well as clinical and survival data are also archived in collaboration with the treating physicians for the majority of the cases. The same process has been followed for further expansion to neuroblastomas and nephroblastomas; data are available since 2009. As of 2016, data for ~3500 cases and similar numbers of matched controls have been registered by NARECHEM-ST along with biological materials, mainly for hematological malignancies. In the course of 22 consecutive years of registration, the procedures have been continuously upgraded to adhere with the academic research ethos and regulations, which have been gradually internationally advanced. For inclusion of cases from all public and private institutions, adaptation to the health care conditions of our country was also necessary through the years following the establishment of new pediatric hematology oncology units. The project has been approved by the Bioethics Committee of the National and Kapodistrian University of Athens Medical School. The Greek pediatric Hematology-Oncology Departments contribute newly diagnosed cases to NARECHEM-ST, following a written informed consent by the guardian of the newly diagnosed child. NARECHEM-ST has so far contributed high quality data to ENCR and European childhood cancer registries, as well as the pediatric registries ACCIS, CI5-X CI5plus, EUROCIM and EUROCAR, which collaborate with the International Agency for Research on Cancer (IARC); of note, cancer registration data were contributed from Greece, for the first time, to the Vol III Edition of the International Incidence of Childhood Cancer (IICC-3)*. The specialized registry is also an active member of international collaborations with the Childhood Leukemia International Consortium (CLIC), the MobiKids project, NOPHO and the Department of Clinical Epidemiology, Karolinska Institut in Sweden. Stand-alone NARECHEM-ST data or jointly analyzed with the readily available SEER data US, data from 14 Southern Eastern European Registries, Sweden (Dept of Clinical Epidemiology) and data of the Childhood Leukemia International Consortium (CLIC) have been used by undergraduate, PhD and postgraduate students in studies aiming to:

1. calculate time trends to be used for health planning and international comparisons on the basis of the uninterrupted nationwide registration and the provision of annual reports of incidence rates by subtype of disease, age, gender, urbanization and socioeconomic status; basic diagrams are also uploaded in the narechem.gr website.
2. explore the etiology of childhood cancer with the ultimate goal to contribute to the prevention of the disease (list of publications)
3. identify non-treatment related prognostic factors which may impact on survival and quality of the life of the young patients (list of publications).