National Pediatric Oncology Registry

Project financed through the "Adopt a project" program initiated by ING Bank Romania

Since 2018, “Dăruiește Aripi” Association has been supporting the development of the National Pediatric Oncology Registry (RNCC) in partnership with the Romanian Society for Pediatric Onco-Hematology, the Coalition for the Cause of Children and Youth Living with Cancer and “Ion Chiricuță” Oncology Institute in Cluj-Napoca.

RNCC provides a major contribution to increasing the chance to life of children living with cancer in Romania, as the only existing basis for the understanding of the needs of pediatric oncology patients in our country.

Why we need a special Pediatric Oncology Registry

  • Cancer is considered a rare disease when found in children and young adults, with a completely different approach as compared to treatment in adults. That is why international cancer policy regulators (WHO and EC) recommend that these cases be recorded separately, in dedicated national registries.
  • The main objective of cancer registries is establishing the prevalence of the disease. The number of new cases lies at the basis of any cancer treatment resource allotment policy and it enables an understanding of the oncologic phenomenon, as a whole.
  • Romanian pediatric patients are not included in clinical trials which ensure the best survival chances in cases with low survival rate tumors.

What we have achieved

  • The first condition for an effective RNCC is an adequate territorial coverage, which means that all pediatric oncology centers should report new cases every year. Despite the fact that the RNCC was started in September 2009, in 2018 it had not managed to cover even 60% of the estimated new cases having appeared on Romanian soil.
  • In order to assess and to solve the issues preventing new case recording within pediatric oncology centers, we had a series of meetings with department chiefs and specialists working within the 13 units of the main hospitals treating pediatric oncology conditions in Romania, as well as with the specialists within the Epidemiology and Biostatistics Department of “Ion Chiricuţă” Oncology Institute in Cluj-Napoca, which also provides the technical methodological knowhow of this project.
  • Following these meetings, a network was created for the registration of Romanian pediatric oncology cases which, aside from covering the reporting of new cases at the moment, also started to fill in the existing gaps in the RNCC history, from its setup to present day (years 2010 to 2017).
  • We have also initiated mail communication with the Society for Pediatric Oncology of Hungary, where a similar registry has been operating with excellent results for very many years. In August 2018, we visited this organization in order to learn from their experience and to be able to create an efficient tool for the use of Romanian doctors and patients.
  • The current data collection tool – the ONC form recommended by the European institutions and implemented in Romania as per the Order of the Health Minister – contains a minimal set of data, which mainly match the recording requirements for cases of cancer in adults and fails to cover the entire set of issues attached to pediatric cancers. Therefore, following consultations with the pediatric onco-hematology specialists and an examination of the international specialized literature, we have set the additional target of improving the case reporting platform so that it also captures the specific clinical aspects of pediatric cancer. 
  • In October 2018, a presentation of the RNCC development project during the Regional Pediatric Onco-Hematology Reunion of Central and Eastern Europe was welcomed with appreciation and support, therefore opening the way for optimizing pediatric cancer registration at central and East-European level as well.

Resources

  • In developing the registry, we collaborate with Mihaela Bucurenci, RNCC Project Manager, department chiefs and specialists within the main pediatric oncology hospitals in Romania, specialists within the Epidemiology and Biostatistics Department of “Ion Chiricuţă” Oncology Institute in Cluj-Napoca, as well as with Hungarian doctors, who rely on a similar registry having proven its excellent working model for years now.

Status

  • In October 2018, the National Pediatric Oncology Registry has been accepted as an affiliate member of the European Network of Cancer Registries (www.encr.eu). This testifies to the RNCC meeting the quality criteria set by the ENCR and it enables Romania to contribute to international statistics around pediatric cancers.
  • End of November 2018, the Romanian pediatric cancer registration network had managed to add to the existing RNCC database 950 notifications corresponding to years 2010-2017, which will allow specialists, for the first time ever, to calculate a pediatric cancer incidence rate for Romania.

Expected results

  • The National Pediatric Cancer Registry will provide a full and updated epidemiologic picture of the pediatric oncology pathology in Romania, thereby providing an important resource for cancer research.
  • For the first time in Romania, it will be possible to obtain an accurate image of the specific needs of pediatric cancer patients – the number of children who require treatment and care annually, the number of specialized doctors and specialized units, the necessary quantities of drugs, specific medical investigations and devices.