National Quality Registry for Childhood Cancer

• Registry Manager: Karolinska University Hospital
• Registry Centre - affiliation: Registry Centre Stockholm, QRC
• Start year: 1982
• Classifications used: ICCC-3 (WHO-2005)
• This registry contains data on: Pharmaceuticals, Diagnoses, Interventions, Inpatient Care, Risk Factors, Follow-up Data 3-5 months after the case is registered in the registry, Follow-up Data 6-11 months after the case is registered in the registry, Follow-up Data 12 months or later after the case is registered in the registry
  

Description of registry

Registration of clinical characteristics, treatment and treatment outcomes for children (aged 0-18) with cancer and hematologic diseases, or other diseases treated with paediatric oncology methods (for other diagnoses, primarily allogeneic stem cell transplantation), diagnosed and treated at paediatric oncology centres in Sweden. Paediatric oncology centres have registered these variables since the beginning of the 1980s (in some cases and for some diseases, earlier than this) and worked with standardisation and development of treatment and evaluation of these since the start.

The aim of the registry is to evaluate childhood cancer treatment in Sweden. The registry also includes registrations from other Nordic countries through cooperation in the Nordic Society of Paediatric Haematology and Oncology (NOPHO). Registration also provides support for ongoing and planned treatment studies, which are usually based on registry data.

Population

Children and adolescents (0-18 years) with cancer, hematologic diseases or diseases treated with allogeneic stem cell transplantation, who are treated with or in consultation with paediatric oncology centres.

Ages in the registry

Ages 0-18. Exceptions: ALL registration also includes young adults 18-45 years of age.

Total volume of registry

14,917 patients registered in total, of which 9,562 are Swedish. Swedish patients are divided into the following sub-registries:

• Acute lymphocytic (lymphoblastic) leukaemia (ALL): 2221 patients
• Acute myeloid leukaemia (AML): 449 patients
• Chronic myeloid leukaemia (CML): 40 patients
• CNS tumours: 2658 patients
• Other solid tumours: 4194 patients.

Double registration for patients with

• leukaemia (ALL and AML) and registration of minimal residual disease (MRD): 2290 registrations
• all diagnoses and registrations of radiation fields and sequelae of radiation (Radtox): 448 registrations
• all diagnoses and registration of summaries of cancer treatment (chemotherapy doses, surgery, radiation, etc.) and sequelae of the disease and treatment (Salub). 335 registrations.

Foreign patients: Denmark: 1760 Norway: 1416 Finland: 1745 Iceland: 87 Estonia: 71 Latvia: 118 Lithuania: 118 Belgium: 40 Netherlands: 58 Hong Kong: 54

Volume over the past operating year

Data for 2012: 593 total registered patients, of which 342 are Swedish. Swedish patients are divided into the following sub-registries:

• Acute lymphocytic (lymphoblastic) leukaemia (ALL): 85 patients
• Acute myeloid leukaemia (AML): 12 patients
• Chronic myeloid leukaemia (CML): 2 patients
• CNS tumours: 98 patients
• Other solid tumours: 145 patients

Double registration for patients with

• leukaemia (ALL and AML) and registration of minimal residual disease (MRD): 257 registrations (for diagnosis in 2012)
• all diagnoses and registrations of radiation fields and sequelae of radiation (Radtox): 58 registrations (for diagnosis in 2012)
• all diagnoses and registration of summaries of cancer treatment (chemotherapy doses, surgery, radiation, etc.) and sequelae of the disease and treatment (Salub): 9 registrations (for diagnosis in 2012).

Foreign patients: Denmark: 66 Norway: 56 Finland: 44 Iceland: 1 Estonia: 10 Latvia: 0 Lithuania: 26 Belgium: 11 Netherlands: 28 Hong Kong: 9.

Coverage rate

Comparison with the National Board of Health and Welfare’s data from the Swedish Cancer Registry showed a coverage rate of about 70 percent, but this is not completely accurate because the Cancer Registry includes D-diagnoses (benign tumours), some of which are not included in the target group for paediatric oncology centres. The coverage rate is being investigated with more detailed correlation between the oncology centres’ registration and sorting out of cases outside the target group.

References on validations

Virtually all studies from the registry have validation of registry data as part of the study plan. Few or no studies have this as the only goal. See the reference list for studies that included validation of the registry.

Note: Variable lists are updated on a regular basis and should therefore be seen as preliminary. For the latest version, please contact the registry.