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Establishing an internet-based paediatric cancer registration and communication system for the Hungarian paediatric
Gábor Borgulya1, Zsuzsanna Jakab, Dezso Schuler
12nd Department of Paediatrics, Semmelweis University of Budapest, Hungary.
Insights
The Hungarian Paediatric Cancer Registry is enhancing its data system to European standards. This upgrade aims to improve cancer registration, support research, and ultimately benefit public health and cancer patients.
Area of Science:
- Oncology
- Public Health
- Health Informatics
Background:
- European cancer registries have focused on harmonizing practices over the past decade.
- The Hungarian Paediatric Cancer Registry has operated since 1971, tracking childhood cancer incidence and treatment outcomes.
Purpose of the Study:
- To elevate the Hungarian registry to European standards through an internet-based system.
- To enhance data quality, facilitate international collaboration, and support clinical epidemiological studies.
- To improve cancer prevention and care for the general public and pediatric cancer patients.
Main Methods:
- Developing an internet-based registration and communication system.
- Modernizing the registry database to align with international recommendations.
- Implementing automatic statistical analyses, encrypted communication, and a secure document repository.
Main Results:
- The project introduces an internet-based case reporting system.
- Database modernization and adherence to international data security standards are key outcomes.
- Establishment of a dedicated website and educational materials are planned benefits.
Conclusions:
- The upgraded system aims to improve the quality and accessibility of paediatric cancer data.
- Enhanced data analysis capabilities will support research into cancer characteristics and treatment efficacy.
- The project seeks to contribute significantly to advancing cancer prevention and patient care.
Abstract:
Cancer registration has developed in Europe over the last 50 years, and in the last decade intensive joint activities between the European Cancer Registries, in response to the need of pan-European harmonization of registration practices, have taken place. The Hungarian Paediatric Cancer Registry has been functioning as the database of the Hungarian Paediatric Oncology Network since 1971, aiming to follow the incidence and the treatment efficacy of malignant diseases. The goals of this globally unique open source information system are the following: 1) to raise the quality of the registration system to the European level by developing an Internet-based registration and communication system, modernizing the database, establishing automatic statistical analyses and adding an Internet website, 2) to support clinical epidemiological studies that we conduct with international collaborators on detailed analyses of the characteristics of patients and their diseases, evaluation of new diagnostic and therapeutic methods, prevention programs, and long-term quality of life and side effects. The benefits of the development of the Internet-based registration and communication system are as follows: a) introduction of an Internet-based case reporting system, b) modernization of the registry database according to international recommendations, c) automatic statistical summaries, encrypted mail systems, document repository, d) application of data security and privacy standards, e) establishment of a website and compilation of educational materials. The overall objective of this scientific project is to contribute towards the improvement of cancer prevention and cancer care for the benefit of the public in general and of cancer patients in particular.
