NATIONAL REGISTRY OF PEDIATRIC ONCO-HEMATOLOGY (RNOHP)
- Founded and directed by the Romanian Society of Pediatric Onco-Hematology since 2010 (since 2018 supported by the partnership with Daruieste Aripi Association).
- Voluntary participation of all the centers of the national pediatric onco-hematology network.
- Data collected, validated and processed according to the standards recommended by IACR/ENCR (affiliation since 2018).
- Cases are notified online on a dedicated, secure platform and customized (since 2019) for specific pediatric oncology requirements.
- Audited by ENCR/JRC (European Network of Cancer Registries / Joint Research Center – EC) in 2021.
- Participation in international data-calls and studies: ECIS (2022), CONCORD4 (2023) BENCHISTA (2021-2023).
- Financed exclusively from non-governmental sources.
SECOND NATIONAL STUDY ON PEDIATRIC CANCERS SURVIVAL
- The first study – in 2019 with JRC-EC technical support, cases diagnosed from 2010-2013.
- Current study – in 2023 for 3328 cases in the RNOHP database diagnosed in the period 01.01.2010 – 31.12.2017.
- Verification of “deaths” information – DEPABD data on vital status on 31.12. 2022.
- Data processing – Analytic platform for real-world data Danny Platform by Sqilline Health.
- Overall survival was analyzed using the Kaplan – Meier method.
- Survival analyzed for the entire 2010-2017 period and by incidence cohorts (cases diagnosed in 2010-2013 survival vs cases diagnosed in 2014-2017).
- In order to increase the degree of certainty ( statistical significance ), the analysis units with a too small number of cases (< 50) were not included.
- Also, the variations with very small amplitude (< 3%) are not considered significant.
CONCLUSIONS
- Survival at 5 years (in the 0-14 years group) in Romania stands at 72% (2010-2017), compared to the EU average of 81% and 71% in Eastern Europe (according to EUROCARE 6).
- The increase in survival in Romania is very accelerated, rising from 69% to 74% for small consecutive incidence cohorts (2010-13 to 2014-17).
- Chances of survival for children (0-14 years) are better than for adolescents and young people (15-19), highlighting the need for dedicated services (PNCC and SIOPE objective).
- Survival rates differ significantly depending on the area/region of residence of the case, with an 8% difference between urban and rural areas, as well as between BIF and NE/SE regions.
- Survival rates increased significantly in 2014-2017 compared to 2010-2013 for most types of tumors, especially in the 0-14 age group, including – hemopathies (>5% ALL, NHL) and solid tumours (>5% in soft tissues, renal, germinal; >10% in CNS, bone).