Completeness and timeliness: Cancer registries could/should improve their performance

Area of Science:

• Epidemiology
• Public Health
• Cancer Research

Background:

• Cancer registries are crucial for providing timely and reliable incidence data for various studies.
• Assessing data completeness and timeliness is essential for effective cancer surveillance.
• Previous surveys have documented methods used by registries, necessitating an update.

Purpose of the Study:

• To survey current methods used by European cancer registries to assess data completeness and timeliness.
• To compare current practices with findings from a 2006 survey.
• To evaluate the timeliness of data dissemination from cancer registries.

Main Methods:

• A survey was distributed to general (GCRs) and specialized (SCRs) cancer registries across Europe within the EUROCOURSE project.
• The questionnaire focused on methods for assessing completeness, timeliness, and dissemination of results.
• Data were collected from 116 registries, representing approximately 280 million people.

Main Results:

• The most frequently used methods for assessing completeness were comparison of trends (79%) and mortality/incidence ratios (>60%).
• More complex methods like capture-recapture (30%) and flow methods (18%) were less common.
• Median latency for incidence ascertainment was 18 months, with an additional 3-6 months for dissemination.

Conclusions:

• Cancer registries should regularly measure completeness using more quantitative methods.
• Transitioning to advanced methods can improve the timeliness of cancer data publication.
• Regular assessment and adoption of quantitative methods are vital for enhancing cancer registry data quality and accessibility.