Recovery and Upgrade of the Romanian National Child Cancer Registry (RNCCR)

Amount:   59.287 euros – 2019

               16.540 euros – 2018

Implementation period: December 2017 – May 2019
Partner: ING Romania

RESULTS

  • 100% National coverage  
  • 10 years worth of casuistry filled out 
  • An increase in the number of registered cases from 1900 to 4200 .
  • International acknowledgement, admission as member of the ENCR. 
  • For the first time in Romania, knowledge of the incidence and survival rate for child cancer in our country. 

 

Since 2018, our organization supports the development of the Romanian National Child Cancer Registry (RNCCR) in a strategic partnership with the Romanian Society of Pediatric Oncology-Hematology and with technical assistance from the Oncology Institute “Ion Chiricuță” Cluj-Napoca.

RNCCR is an essential resource to survival chances improvement for the children with cancer in Romania, being the main objective source of information on their needs and for the planning of Pediatric Oncology (PO) services development in our country.

In June 2019 RNCCR was considered the most significant contribution to health in Romania by civil society – being awarded the First Prize of the Health section at the Civil Society Gala (link to the diploma and photo).

The latest RNCC can be found here.

Why is a special Childhood Cancer Registry needed?

  • Cancer in children and young people is a rare disease, completely different from adult cancer. Therefore, international cancer policy leading organizations (WHO and EC) recommend distinct registration through dedicated national registries.
  • The primary goal of cancer registries is to determine incidence. The annual number of new cases is the basis of any policy for allocating resources for cancer, but also the basis for understanding the cancer phenomenon as a whole.
  • The existence of a high quality cancer registry is the main condition for inclusion in clinical trials, (which ensures the best chances in tumors with low survival.) In the absence of a high standard Pediatric Cancer Registry, children hospitalized in Romania do not benefit from this precious opportunity.

Our accomplishments

  • A critical success factor for a national cancer registry is the appropriate territorial coverage, which means that all pediatric oncology centers should report all new cases each year. Despite the fact that the RNCCR database was initiated in September 2009, by 2018 it couldn’t collect even 60% of the new cases. Discontinuity in funding, excessive bureaucracy, poor communication and a narrow strategic horizon have hampered the continued participation of PO centers in the RNCCR and it’s sustained functioning at national level.
  • In order to evaluate and solve the problems in the registration of cases at the level of pediatric oncology centers, we had working meetings with heads of departments and specialists from the 13 Pediatric Oncology (PO) clinics in Romania, as well as with experts of the Department of Epidemiology and Biostatistics of the Oncology Institute “Ion Chiricuţă” Cluj-Napoca -which provides methodological and technical expertise in this project.
  • Following these meetings, a national network for the registration of childhood cancer was formed in Romania, which – in addition to reporting new cases today – initiated a retrospective completion of the RNCC cases, from the database establishment 2010 to -2017.
  • Until 2018, the reporting of data was done in word format by the participating centers, being cumbersome and incomplete. Through the project, the online reporting was initiated on a dedicated platform (oncped.iocn.ro) made available by the Oncological Institute “Ion Chiricuță” Cluj within the North-West Regional Cancer Registry (the only cancer registry in Romania internationally recognized)
  • The initial data collection tool – the ONC file recommended by the competent European fora and implemented in Romania by Order of the Minister of Health – contains a minimal dataset, which mainly meets the requirements for adult cancer registration and does not cover the specific features of childhood cancers. For this reason, after consulting with specialists from the pediatric onco-hematology centers and international literature, we undertook an optimization process of the reporting platform, so as to capture clinical aspects specific to childhood cancer. It was finalized in 2019 by introducing new fields for recording essential clinical information for the analysis of child cancer situation, such as: the Toronto staging system, the patient pathway in country and/or abroad, treatments and their outcome, long-term follow-up.
  • Our RNCCR development project presentation at the Regional Meeting of Pediatric Onco-hematology in Central and Eastern Europe (October 2018) and at the JARC Joint Workshop (March 2019) was highly appreciated and opened the perspective of a cooperation for optimizing the registration of pediatric cancers at Central and Eastern European level.
  • In October 2018, the Romanian National Child Cancer Registry was accepted for affiliation by the European Network of Cancer Registries (www.encr.eu) an indication that RNCCR meets the quality criteria imposed by ENCR for cancer registries, thus allowing Romania to participate with actual data in international statistics on childhood cancer.
  • In February 2019, the First Analysis on Updated National Data on Childhood Cancer (link to ppt with RNCCR 2019) was launched in Romania – based on the first RNCCR report after the retrospective completion of the database for the period 2010-2017. All the incident cases registered with the PO network at national level were recovered (amounting to 3300 cases), thus allowing for the first time the calculation of the incidence (frequency of occurrence) of childhood cancer in Romania.

Our resources

In developing the Romanian National Child Cancer Registry (RNCCR), we collaborate with:

  • Dr. Mihaela Bucurenci, Public Health Expert, RNCCR coordinator
  • specialists of the of the Department of Epidemiology and Biostatistics of the Oncology Institute “Ion Chiricuţă” Cluj-Napoca
  • North West Regional Cancer Registry
  • heads of PO departments and pediatric oncologists from Romanian PO centers
  • experts of the Joint Research Center – Cancer Information Unit al Comisiei Europene

Our Impact

  • The National Register of Childhood Cancer will provide on an ongoing basis a national updated epidemiological  picture of pediatric oncologic pathology on the Romanian territory, as an established  core resource for national and international research.
  • For the first time in Romania, the specific needs of cancer in children will be known objectively : the annual number of children in need of specific medical care, the need for doctors and specialized departments, the need for medicines, specific investigations and medical devices.
  • The registry provides a starting basis for any objective and comprehensive assessment of the performance of our national health system in caring for children with cancer and the basis of any National Cancer Plan for the pediatric population.

The full Report of the project can be consulted here.

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