The Center for Biomedical Research Network (CIBER) together with the Spanish Association Against Cancer (AECC) have agreed to establish a centralized information system on cancer in Spain. Its objective is to obtain a complete vision of this disease throughout the State
The CIBER in collaboration with the Spanish Association Against Cancer (AECC) will launch this registry, called the Cancer Epidemiological Information System (SIEC), which will systematize and unify the main epidemiological indicators of cancer in Spain.
In this way, rigorous and official data on this disease can be offered to make decisions at the level of the autonomous community, or even province.
The portal is planned to be available by the end of 2022.
Since the arrival of the coronavirus in March 2020, the world has been involved in momentous political, social and economic changes. However, other diseases, including cancer, continue to rise.
Updated and complete information
In the note in which the CIBER and the AECC recently announced this agreement, it was stated that “the SIEC will facilitate epidemiological monitoring, unify sources that are difficult to access, and build official indicators that have not been available until now.”
This cancer registry will work from data from Spanish population registries that are accredited by the International Agency on Cancer.
The user will be able to find statistics on epidemiological risk indicators of a geographical, temporal and demographic nature on the incidence, mortality, survival and prevalence of cancer.
This will be completed with informative information on risk and protective factors for the different types of tumors. In addition, a glossary on epidemiological surveillance will be included to understand the most important terms about cancer.
From these data, researchers will be able to establish the survival rate of cancer types over time or possible geographical variations, among other things.
Marina Pollán, director of the National Center for Epidemiology of the Carlos III Health Institute and CIBERESP, points out that “in Spain there is no single national cancer registry, although there are various initiatives in this regard that provide information -such as the Spanish Network of Cancer Registries (REDACAN) or the ARIADNA epidemiological information system of the National Epidemiology Center of the ISCIII”.
This expert adds that “it is necessary to have a quality information system at a national level with updated, integrated and as disaggregated as possible information on the burden of cancer in Spain”.
plan to prevent
María José Sánchez, coordinator of the Cancer Surveillance Subprogram at CIBERESP, explains to EFEsalud that “knowing these statistics is key to being able to make decisions, act quickly and avoid territorial inequalities in health protection.”
“This portal will allow us to know the temporal trends of prevalence and survival. We are going to see if this survival for the types of cancer improves over time or if there are geographical variations between the different Autonomous Communities. If we observe important differences, another series of studies would have to be considered to see the reason for these variations in the indicators”, he affirms.
Diego de Haro, responsible for the program at the Spanish Association Against Canceradds that it is a “very innovative project that will also help to develop a plan for the different benefits and services that public administrations have to provide”.
In Spain, as in other European countries, there are 14 consolidated registries on the incidence of cancer. These are known as population-based tumor registries, as is the case with the ARIADNA project.
However, from the CIBER they detail that “all these registries are provincial and until now only between 20 and 30% of the Spanish population are being registered in a real and direct way”.
For this reason, the new portal will make it possible to collect updated data that can be extrapolated to the entire Spanish population and make precise estimates for each territory.
A cancer registry open to all
The new page will be available to the scientific community and the general population. Its purpose is that any patient, relative or interested person can access without special permissions and learn the reality about cancer.
Diego de Haro recalls that this is a “fundamental aspect, a platform accessible to everyone and with the main indicators”.
Although the individualized databases cannot be downloaded nor can a researcher upload their information, it can be used to schedule new analyses. This will allow you to see the indicators according to age ranges or sex.
The cancer pandemic
Especially in the first wave of the coronavirus screening programs of cancer stopped their activity due to the health crisis.
Also, many research projects and laboratories had to close, thus experiencing delays in many cases.
Added to this was the fear of the general population to go to the doctor due to the virus, which made it difficult to make cancer diagnoses.
María José Sánchez points out that “we must be clear that there is a cancer pandemic because more cases are being diagnosed, so it continues to be a public health problem and we must not get lost.”
However, he specifies that “the health system is making an effort to cover all cancer patients so that their diagnosis and treatment have no consequences.”
