Danish Childhood Cancer Registry

Abstract

Aim of databaseThe overall aim is to monitor the quality of childhood cancer care in Denmark; to register late effects of treatment; to analyze complications of permanent central venous catheters (CVCs); to study blood stream infections in children with cancer; and to study acute toxicity of high-dose methotrexate infusions in children with leukemia.Study populationAll children below 15 years of age at diagnosis living in Denmark diagnosed after January 1, 1985 according to the International Classification of Diseases 10, including diagnoses DC00–DD48.Main variablesCancer type, extent of disease, treatment, participation in international studies, recurrence of malignant disease, survival, yearly follow-up status, causes of death, and development of secondary malignancies. Type of CVC, causes for removal of the CVC, type of blood stream infection, pathogens isolated, antimicrobial sensitivity, and outcome of antimicrobial chemotherapy.Descriptive dataSince 1985, 4,944 children below 15 years of age have been registered in the database. There has been no significant change in the incidence of childhood cancer in Denmark since 1985. The 5-year survival has increased significantly since 1985 and is now 86%. The median number of days from diagnosis to initiation of therapy is 7 days and in 80% of the children less than 14 days. Clinical data of 95% of the patients are reported to open international studies.ConclusionThe survival of Danish children with cancer since 2003 compares favorably with other international population-based studies. The annual reports support the collaboration within pediatric oncology in Denmark.

Pediatric malignancies presenting in the head and neck

“…The primary strength of the present study is that it arises from a complete, prospective population-based database of childhood cancer patients, considered to be 100% complete. [2] These findings should be valid in comparable populations. Also, we validated the diagnoses using the original pathology reports, and we examined the medical records thoroughly.…”

“…DCCR is cross-referenced with the Danish National Patient Registry, the National Pathology Registry and the Danish Cancer Registry, and is considered to be 100% complete. [2] Furthermore, we searched the Danish national thyroid cancer database DATHYRCA, [15] which returned 3 cases already present in the DCCR registry. Diseases were classified according to International Classification of Childhood Cancer, 3 rd edition (ICCC3).…”

“…Childhood cancer is a relatively rare disease, affecting approximately 150-200 per 1 million children per year. [1,2] Subtypes include leukemia, lymphoma, central nervous system tumors and various solid tumors. [1] Although uncommon, childhood cancer is a life-altering event, and it is one of the leading causes of death of children in the developed world.…”

Somatic late effects in 5‐year survivors of neuroblastoma: a population‐based cohort study within the Adult Life after Childhood Cancer in Scandinavia study

“…Information on treatment from clinical registries based on medical charts ( Figure S1) was available for a subcohort of 332 (46%) of the 721 survivors, 3,[16][17][18] of whom 71 were treated with high-dose chemotherapy with autologous stem-cell transplant (ASCT), 149 with chemotherapy AEirradiation AEsurgery, 103 by surgery only, and 9 received no treatment ( Table 1, footnote).…”

The power of empirical data; lessons from the clinical registry initiatives in Scandinavian cancer care

“…In Scandinavia, long-term professional collaborations in pediatric oncology, largely coordinated by the Nordic Society of Pediatric Oncology and Hemathology (NOPHO), serve as a model for how coordinated efforts to develop and compatible registries, design and run clinical trials, define treatment standards and study late side effects have had positive effects on survival and quality of life [91][92][93][94]. In Denmark and Norway, the childhood cancer registry is part of the national clinical registries and in Sweden work is ongoing to migrate 8 separate childhood cancer registries into the Swedish national platform for clinical registry work [95].…”