The Scientific Director introduces the Veneto Tumour Registry (Registro Tumori del Veneto)
I would like to give a warm welcome to visitors to the Veneto Tumour Registry, and provide a few general details about how this institution forming part of the region’s public health system is organized. This text is intended mainly for non-technical readers. People more expert and familiar with the world of neoplastic diseases will certainly not need further information, beyond what they can already find on the Registry’s website.
Around the world, registries have been set up to provide citizens and health systems with the “figures” on neoplastic diseases.
No area of oncology-related activity can do without the numbers contained in Cancer Registries:
- citizens, first, find answers to questions they often have about their own state of health;
- researchers draw inspiration from them in choosing which issues to study;
- they orient cancer prevention schemes, and their outcomes are measured against them;
- diagnostic procedures are influenced by them as they help identify priorities;
- they provide essential information for orienting therapies, and for assessing their efficacy and efficiency;
- they shed light on the “oncological safety” of environmental conditions, farming, manufacturing and industrial methods, and conditions in the workplace;
- public health policy-makers rely on tumor-related epidemiological data when deciding how to allocate resources;
- the numbers in the registries also support the ethical decisions behind efforts to humanize protocols for the prevention, diagnosis and treatment of neoplastic diseases, and for the humane care of patients.
Each of the above points is worth a more in-depth analysis, of course, but this would go beyond the scope of this layperson’s introduction to the general goals of the tumour registry implemented in the Veneto region.
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), making it the largest tumour registry in Italy.
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.