The Spanish Registry of Childhood Tumors (RETI-SEHOP), about to turn 40 years old, is an essential tool to know the incidence of pediatric cancer and contribute to equity in the care of those affected in Spain, where survival is Approximately 80%
Based in the Faculty of Medicine of Valencia, was created in 1980 thanks to the impulse of who was Professor of Pediatrics and Health Minister Joaquín Colomer before the need of the Spanish professionals of pediatric oncology to have something that allowed them a self-evaluation and knowledge of your results.
The collaboration between the Universitat de València (UV) and the Spanish Society of Pediatric Hematology and Oncology (SEHOP) has allowed the development of this scientific project, to which 45 pediatric hematology and oncology units in Spain notify all the cases they diagnose. that allows a 90% coverage.
Since its creation and until 2017 it has been directed by Rafael Peris, professor of Medical Documentation of the UV, who was replaced in the position as scientific director by Professor Rafael Fernández-Delgado, pediatric oncologist, and as technical and economic administrative director by María Soledad Barreda.
In an interview with EFE, Peris and Fernández-Delgado have ensured that the registry is a tool for assessing the quality of assistance "of incalculable value" and allows to know how cancer is managed in children in Spain and compared with others countries
According to Peris, although survival due to childhood cancer in Spain has improved "significantly" since the beginning of pediatric oncology, the current results are "suboptimal because some countries such as Germany or Austria are a few points above."
An important factor for this survival is something greater is that in these countries the economic investment in Health "is superior in general to that of Spain," according to Fernández-Delgado, who has stressed that despite this lack of funding the health system Spanish is "excellent".
Peris has told EFE that the registry data contribute to highlighting these differences and the situation in Spain as health authorities "become aware" of the issue, such as the Ministry of Health, which in November made a proposal to improve the organization of the pediatric oncology in this country.
"The data of the registry, besides having a scientific value, want to lead to guarantee or to put in evidence a situation that allows and guarantees the equity", underlined Fernández-Delgado, who indicates that when in a place something is improved "it is sought that reaches all sites. "
The incidence of pediatric cancer in Spain is about 160 cases per million children, similar to the rest of developed countries, and survival in the first five years after diagnosis has gone from 54% in 1980 to about 80% almost four decades later.
Leukemias, lymphomas and tumors of the central nervous system are the most common in Spain and in other European countries, followed by retinoblastoma, kidney, liver or bone, among others.
For Peris, in the case of childhood cancer, where there are more than a hundred different diseases, there is no isolating factor that, by withdrawing it, allows an impact on its incidence, as in the case of adult tobacco, which, if eliminated, would practically make the cases disappear. of lung cancer.
Childhood cancer is "fortunately a rare disease," according to Peris, who adds that although there are good figures for survival is the first cause of death in children after the problems arising from pregnancy and childbirth and accidents.
The pediatric hematology units, in addition to providing the data included in the registry, collaborate in the follow-up of patients up to the fifth anniversary of the diagnosis, according to Peris, which indicates that although practically all are patients under 14 years of age, Some centers include affected people with some more years.
Once the data arrives at the RETI-SEHOP, a statistic is processed, analyzed and done, and every year, on the month of May, the information updated to December of the previous year is published, something "exceptional" in the cancer registries. and of diseases in general.
"The registry is not a mere database, nor a routine nor an administrative office, is an entity that provides information and every year allows answering new questions: the main ones, which mean answering an equity", according to Peris.
The registration is financed thanks to an agreement that has just been renewed with the Ministry of Health, and with aid from entities such as the Enriqueta Vilavecchia Foundation of Barcelona, the Spanish Association Against Cancer and the Foundation of the Spanish Association of Pediatrics.