The significance of the Registry
The Registry is a significant tool for doctors and for monitoring children with cancer. The data collected per patient regarding the disease, treatment, progress, etc. assist in:
- Extracting conclusions about the prevalence of cancer, the distribution per age and the progress of the disease.
- Monitoring outcomes.
- Monitoring the effectiveness and safety of applied treatments.
- Evaluating the healthcare services in terms of prevention, diagnosis and treatment of the disease.
The initial efforts
As early as 1990, Floga highlighted the need to create a Cancer Registry, with a specific plan, which it submitted to the competent state authorities.
In 2008 we responded to the request of the Hellenic Society of Paediatric Haematology-Oncology (EEPAO), headed by Eleni Vasilatou-Kosmidi, to fund a Childhood Cancer Registry.
The effort was an initiative introduced by the EEPAO, which, however, was not supported by the competent state authorities. As a result, the project gradually came to a halt.
The announcement by the State to create a Cancer Registry that would include children, which was never implemented, also contributed to this inertia.
The initial results for the period 2009-2015 were presented at an annual EEPAO conference in Volos in 2015. These results were misleading and far from representative, given that not all of the country’s oncology departments had made entries to the registry.
New National Childhood Cancer Registry
In 2020 the Health Ministry formed a working group, which was tasked with creating and implementing a new National Childhood Cancer Registry.
Floga participated in the working group as a representative of parents of children with cancer.
The working group is mainly made up of doctors representing all the oncology departments in the country, as well as the EEPAO.