National Cancer Registry of Ukraine

Main facts:  NCRU system is introduced in all state oncological institutions, aiming to cover all cancer cases  More than new cancer cases per year;  More than patients under follow-up;  More than cancer records in NCRU’s database as of 2016;  Network of hospital-based cancer registries established in major oncological institutions.

Main dates:  1988 – start of work  1996 – official legislation (The Order #10 of the Ministry of Health Care of Ukraine, January 22, 1996)  2002 – the whole country is covered by the network of population-based cancer registries

Main features of the NCRU Information Technology  Satisfies basic needs for information from local and national authorities and institutions  Supports state statistical reporting  Unified software and classifiers  Automated data checking  Automated data exchange tools  Automated coding into ICD-10, ICD-O-3, ICCC-3, TNM staging  The system is kept and maintained by present staff of the oncological institutions with respect to current technical and human resources availability

Map of regional PBCRs

Structure of NCRU Central Cancer Registry (National Cancer Institute of Ukraine) Oblast Cancer registry (oncological dispensary) Rayon Cancer registry (rayon dispensary) … … Oblast Cancer registry (oncological dispensary)

Paper Sources

Distribution of new cancer cases by sources

Population-based and Hospital-based cancer registries Population-based CR Hospital-based CR All residents with malignant tumorsAll patients of an oncological facility, including non-residents and non-cancer diseases Collects minimal set of data items about all cancer patients Collects extended set of data items with primary focus on patient’s treatment received at the oncological facility Primary source - Registration formPrimary source - Medical record Serves needs of local and national oncology service Serves needs of the oncological facility e-document "electronic extract" allows exchange of information between two systems

Information blocks in Population-based CR data Passport DiagnosisTreatment Examination supervision Follow up information

Information blocks in Hospital-based CR data Passport Prev. accomp. diseases Diagnosis Prevalence Hollow organs Paired organsGynecologicalComplications In-patient data Treatment Surgical protocol RT protocolCT protocolComplications Follow up information Pathologic diagnosis immunohystochem. markers

Data exchange between PBCR and HBCR Passport Prev. accomp. diseases Diagnosis Prevalence Hollow organs Paired organsGynecologicalComplications In-patient data Treatment Surgical protocol RT protocol CT protocol Complications Follow up information Pathologic diagnosis immunohystochem. markers

Network of hospital-based CRs

Generalized Scheme of automated data flow

Principles of interaction between National Cancer Registry of Ukraine and other potential data sources NCRU All cancer cases Specialized registries, biobanks etc. Persons exposed to risk factors RECORD LINKAGE

Comparability and data quality  Compliance with the International Agency for Research on Cancer (IARC) / International Association of Cancer Registry (IACR) guidelines in terms of number of dataset items collected  Follows IARC/IACR rules for data quality and compatibility  NCRU supports major international classifications: ICD-9, ICD-10, ICCC-3, ICD-O-3, TNM (4-7 editions) etc.  NCRU data presented in the IARC publication “Cancer Incidence in Five Continents, Vol. X”

Use of information  Source of analytical materials submitted to the Parliament of Ukraine, Ministry of Health, Academy of Medical Sciences of Ukraine, other local and government ministries and departments are based on the information generated by NCRU  Annual "Bulletin of National Cancer Registry of Ukraine" is published (available in Ukrainian and English).  NCRU’s data serves as a basis for decision-making in prevention, early detection, diagnostics, treatment and rehabilitation of cancer patients.  NCRU takes active part in international research projects, and collaborates with leading scientific institutions of Ukraine.

Premises for successful development and implementation of the information technology at NCRU  Existence of the state system of cancer registration, including officially approved paper registration form  The system was developed and currently maintained by the professional IT experts - staff members of the oncology service  Development, organizational and methodological support was carried within head institution - National Cancer Institute of Ukraine  Implementation of best international practices, methodological support from international organizations (European Network of Cancer Registries (ENCR), International Agency for Research on Cancer (IARC), International Association of Cancer Registries (IACR))  The system meets information needs, as well as staffing and existing capabilities of healthcare system in Ukraine. It is a working tool for personnel allowing more effective performance of everyday duties.

Further development requirements  Technical resources and personnel support for central NCRU’s unit are required to take care of  IT-development and improvements;  Data management and analysis;  Support of regional users.  Technical resources and personnel support are required when establishing and maintaining modern IT technologies and software in healthcare institutions  National guidelines and standards for the exchange of information in public health care are required

, І century BC. Marcus Tullius Cicero, І century BC.  Fed quod potui, faciant meliora potentes  (I did what I could; let those who can do better).