Use of patient registries and administrative datasets for the study of pediatric cancer

Abstract

Analysis of data from large administrative databases and patient registries is increasingly being used to study childhood cancer care, although the value of these data sources remains unclear to many clinicians. Interpretation of large databases requires a thorough understanding of how the dataset was designed, how data were collected, and how to assess data quality. This review will detail the role of administrative databases and registry databases for the study of childhood cancer, tools to maximize information from these datasets, and recommendations to improve the use of these databases for the study of pediatric oncology.

Factors associated with survival in pediatric adrenocortical carcinoma: An analysis of the National Cancer Data Base (NCDB)

“…Our study has several limitations inherent to using large national datasets to study pediatric solid tumors [24]. The NCDB is a national registry administered by the Commission on Cancer (CoC) of the American College of Surgeons and American Cancer Society.…”

“…Unfortunately, not all freestanding children's hospitals are members of the CoC. Therefore, it is not a comprehensive registry of every child or even most children with ACC over the time period studied [24]. Also, the dataset includes data from centers which are not Children's Oncology Group affiliated centers, thus including children who are not treated on a COG protocol.…”

Childhood Neuroblastoma: Incidence and Survival in Argentina. Report from the National Pediatric Cancer Registry, ROHA Network 2000-2012

“…Rice et al. recommend to include MYCN status for patients with NB in national cancer registries. The ROHA has collected this information since the beginning and improved coverage from 43% in 2000 to 72% in 2012 because of the commitment of oncologists who are part of the ROHA network.…”

“…(Table IV) Information on stage at diagnosis and MYCN status is important when describing the survival of children with NB-GNB: Overall, 48% (n = 468) had an INSS stratification and 48% had a MYCN status. Rice et al [30] recommend to include MYCN status for patients with NB in national cancer registries. The ROHA has collected this information since the beginning and improved coverage from 43% in 2000 to 72% in 2012 because of the commitment of oncologists who are part of the ROHA network.…”

Comment On: Use of Patient Registries and Administrative Datasets for the Study of Pediatric Cancer

“…To the Editor: The review recently published by Rice et al . focusing on the research potential of patient registries and administrative datasets represents an important addition to the pediatric oncology literature.…”