Development and Support of the Romanian National Registry for Pediatric Oncology and Hematology

European Citizen’s Prize 2020 awarded by The European Parliament for the project “Developing The Romanian National Registry for Pediatric Oncolgy and Hematology”

First Prize Health category – Romania at the Civil Society Gala, XVIIth edition, June 3rd 2019

Dăruiește Aripi Association has been supporting the development of the Romanian National Registry for Pediatric Oncology and Hematology since 2017, as part of the strategic partnership with the Romanian Society of Pediatric Oncology and Hematology.

The Registry is an essential resource for increasing the survival rates and quality of life for children with cancer in Romania. It also plays a crucial role in improving the care they receive at all levels, in all regions, and across all sectors involved.

The most recent Registry report can be consulted here.

Why is a dedicated Pediatric Cancer Registry necessary?

  1. To determine the incidence: the number of children diagnosed annually with cancer in Romania, leading to the identification of the need for specialized doctors and centers, medication requirements, specific investigations, and medical devices.
  2. To determine survival rates: assessment of the outcomes of medical care for children with cancer in Romania, as reflected by survival studies.
  3. To connect to international networks on pediatric cancer epidemiology research.
  4. International cancer policy forums (World Health Organization and the European Commission) recommend separate registration of pediatric cancers by means of dedicated national registries.
  5. The existence of the Registry is a primary condition for the inclusion of children with cancer from Romania in clinical trials, ensuring the best chances in pathologies with low survival rates.

Achievements:

  • National coverage: Cases reported by all 12 pediatric oncology-hematology centers in Romania.
  • Registry data were used for the first time to substantiate proposals for the National Cancer Plan and respective secondary legislation (2023).
  • International recognition: In October 2018, our Registry was accepted for affiliation by the European Network of Cancer Registries (ENCR), meeting all quality criteria set by the network’s experts.
  • As of November 2023, the database contains 5,653 reported cases starting from 01.01.2010.
  • Daruieste Aripi conducted a survival study in 2019 for cases diagnosed between 2010 and 2013.
  • Daruieste Aripi presented the Registry at the Regional Meeting of Pediatric Oncology-Hematology in Central and Eastern Europe. The Registry received appreciation and support at the JARC Joint Workshop, opening the prospect of cooperation for optimizing pediatric cancer registration at the European level.
  • The Registry was audited by ENCR experts, who produced favorable opinions, and appreciation for the technical reporting solutions and for the structure of the reporting form.

Goals for 2024:

To modernize the IT infrastructure hosting the Registry by acquiring and developing a secure web platform, using state-of-the-art cloud technologies. The new digital platform will replace the current IT arrangements – currently the Registry is hosted on the servers of the Cluj Napoca Oncology Institute.

The new platform will provide:

  • Upgraded data security – completely secure and anonymized, ensuring patient confidentiality.
  • Optimized user experience for registrars and platform administrators  – simplified data entry and processing.
  • Modern and updated data models for notifications and cases, aligned with new standards in pediatric oncology.
  • Automated functions to ensure data quality according to ENCR standards, recommendations, and best practices using artificial intelligence.
  • Data import-export facilities through integration with other systems, primarily with the DARA platform, but also with ENCR, CONCORD, etc.
  • Capacity for data analysis and business intelligence.
  • Cybersecurity.
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