The “technical mission” of tumour registries
Registries of neoplastic diseases collect information on new tumour diagnoses involving the resident population in a given area: the number of people affected, the type of tumour involved, and the course of the disease.
In Italy, there are 47 tumour registries, and together they cover 63% of the country’s population.
The registration process relies on a spectrum of complementary sources of data. The most “dependable” of all sources is unquestionably the finding of a neoplasm documented by means of a pathological examination (which involves examining a sample of diseased tissue under the microscope). Other important sources include hospital discharge records, X-ray reports, details of the administration of antitumour drugs, and death certificates. Combining the information from all these sources ensures that the data in the tumour registry, and in the records of the public health system to which it belongs, are reliable. It is safe to say that a Cancer Registry is all the more dependable, the more “structured” the public health system that it is part of.
The Veneto Tumour Registry (RTV)
The RTV was formally established by Regional Law n. 11 of 16 February 2010. The norms governing how it functions are contained in Regional Regulations published in 2013 (“Norme per il funzionamento del Registro Tumori del Veneto”), as approved by the Italian Data Protection Authority.
Over the years in which it has been active, the population covered by the registry has gradually risen, and in 2018 it reached the Veneto’s whole population (4,900,000 residents).
The Veneto Tumour Registry is a member of the Italian Association of Tumour Registries (AIRTUM) and cooperates with some of the most prestigious international institutions dedicated to tumour epidemiology.
The registry has a new website that makes it more readily accessible to citizens and public health operators than the previous, original version.
Methods
The registration process is based on data that is encoded and computerized, and derives from three main sources: i) pathology reports; ii) hospital discharge records; and iii) death certificates.
To restrict the individuals covered by the registry to residents of the Veneto alone, diagnostic information is linked with the Regional Health Service’s population lists. A computer-based procedure identifies the new tumour diagnoses that constitute the core element of the Registry. Tumour incidence assessments are conducted with a dedicated software. In a proportion of cases (that varies between 40 and 50%) the results of this automated procedure need to be integrated with additional sources (reports on diagnostic X-rays or endoscopies, patients’ medical histories, hospital discharge correspondence, reports from A&E departments, and – as a last resort – details from patients’ clinical records).
In accordance with the guidelines of the International Agency For Research On Cancer (IARC) and the Italian Association of Tumour Registries (AIRTUM), the essential information collected on each case includes: the patient’s date of birth, gender, and municipality of residence at the time of their diagnosis; data on the disease’s incidence; topographical and morphological codes according to the International Classification of Diseases for Oncology (ICD-O-3); the grounds for the diagnosis; the patient’s status (alive or dead); and follow-up data. In some cases further specific details are added to this basic information.
The RTV files currently include 779,371 incident cases of neoplastic disease recorded between 1987 and 2021, with a follow-up of on patients’ status (alive or dead) up to date as at 31 December 2023.