Global insights into brain tumor registries: Lessons for countries establishing a national brain tumor registry.

Abstract

Brain tumor registries around the world have significantly contributed to the clinical, scientific, and epidemiological understanding of brain tumors. The success of these registries has prompted many other countries to create such resources for their own populations. This narrative review compares the construction, structure, and function of brain tumor registries in the United States, China, Japan, Canada, England, Australia, Austria, Denmark, and Sweden, drawing key learnings from each. Brain tumor registries from three large, medium, and small countries were identified, and their establishment, organizational structure, and primary functions were examined. This analysis found eight key considerations for establishing a national clinical registry: (1) clearly defining the aims and objectives of the registry, (2) assessing the role of supportive legislation, (3) evaluating various registry structures, (4) assessing existing registry infrastructure, (5) weighing the benefits and drawbacks of government involvement, (6) recognizing the role of specialist centers, (7) ensuring futureproofing, and (8) prioritizing comprehensive population coverage. These findings were then applied to the New Zealand context to demonstrate how such learnings can be considered by countries wishing to establish their own registry. This review provides a practical framework for nations seeking to develop similar clinical registries.