Romania
Cancer Centers
Healthcare System
The Romanian healthcare system operates under a social health insurance model, aiming for universal coverage. However, in practice, it covered 89% of the population as of 2017. The system is governed by the Ministry of Health and administered by the National Health Insurance House (NHIH). Both these bodies are represented locally through district public health authorities and district health insurance houses (DHIHs).
The healthcare system is financed from four main sources: national health insurance funds, the state budget, local budgets, and out-of-pocket (OOP) payments. OOP payments include direct payments for private services, co-payments for medicines, and potentially sizable informal payments.
The benefits provided by this system encompass a range of services. Primary care is provided by family physicians, who play a gatekeeper role, although direct access to specialists is possible for certain conditions. Specialist consultations, hospital care, and emergency services are provided by a network of various providers, such as outpatient departments, polyclinics, and specialized medical centers, but access can be uneven, with rural areas facing more challenges than urban areas.
To be eligible for these benefits, individuals must contribute to the national health insurance fund, a mandate that applies to employees, employers, and the self-employed. Certain groups like students, pensioners, and unemployed individuals receive state-funded health insurance.
Data management has been digitalized with the creation of national electronic systems for medical prescriptions and the insured. Hospitals and clinics are obliged to maintain patient records and are transitioning to Electronic Health Records (EHRs). The system faces challenges, including data standardization and interoperability across different healthcare providers.
Administrative or Claims Data
Database: Mortality by cause of death
Sponsor, manager or home institution: National Institute of Statistics (Institutul Naţional de Statistică).
Primary purpose: Registry the number of deaths for statistics purpose.
Type of information: Commune / city / municipality, county / sector, date, number of the document from the civil status register, code siruta, personal numeric code, name and surname, sex, number of children born alive during life (for women only), date of death, date of birth, marital status, date of birth of the surviving spouse, occupational status employee, level of education, citizenship, ethnicity, domicile, place of death, country where he died, country where he was born, causes of death (cause - includes neoplasms -, antecedent causes, the initial morbid state, and other important morbid conditions), manner of death (naturally, indeterminate, accident, suicide, homicide), status of autopsy.
Available type of information: POP206C - Deceased by causes of death, macro-regions, development regions and counties.
POP206F - Deceased by gender and cause of death.
POP206I - Deceased with usual residence in Romania by causes of death, macro-regions, development regions and counties.
POP206L - Deceased with usual residence in Romania by sex and cause of death.
Source of Information: Death statistical bulletins made by the civil registry.
Data level: Patient-level.
Available data level: Regional and national-level.
Number of Records: Unknown.
Date Range: 1990 onwards.
Cancer Areas of Interest: Unknown.
Open data access: To find statistics about death, on the domain page of this website, located in the topic "A.2 VITAL STATISTICS" choose the option "DEATH", then choose the indicator you want to see.
Data access: To request access to restricted data, follow the instructions presented here.
Information/Contact for data request: Contact information.
Database: Diagnosis Related Group (DRG)
Sponsor, manager or home institution: National Institute of Health Services Management.
Primary purpose: Characterize the hospital's patient care in order to evaluate the results, increase efficiency, and administrate the hospital's financing system. Classifies the patients simultaneously by type of pathology and cost of care.
Type of information: Type of information - DRG Romania
Available type of information: Available type of information - DRG Romania
Source of Information: Hospitals and ambulatory care reports.
Data level: Patient-level.
Available data level: National, regional, and hospital levels.
Number of Records: Unknown.
Date Range: 2002 onwards.
Cancer Areas of Interest: Cancer areas of interest - DRG Romania
Open data access: Medical and pediatrical oncology data can be acessed in this website. The quarterly indicators for evaluating the activity of hospitals are available here.
Information/Contact for data request: Contact information
Registries
Database: National Registry of Childhood Cancer (RNCCR)
Sponsor, manager or home institution: Daruieste Aripi Association and Romanian Society of Pediatric Onco-Hematology.
Type of information: The information contained in the registry follows the recommendations of ENCR, so the dataset can be checked in this document. Furthermore, it includes clinical data and the newest pediatric cancer staging system recommended by the Toronto Consensus, which is presented here. Data refers to people aged between 0 and 14 years.
The variables available to be registered by the sources in the database are: CNP, name, first name, date of birth, age, sex, county, city, address, date of cancer diagnosis, explication (reason for registering the diagnosis: hospitalization, death, biopsy, etc.), date of clinical onset, date of relapse, reason for reporting, registration base (data source), tumor location, topographical code, laterality.
Histopathological/cytological examination (behavior, morphological code, degree, cod ICC3 primary, cod ICC3 category, cod ICC3 subcategory).
Toronto staging (diagnostic class, level 1, level 2).
TNM staging for solid tumors not included in Toronto staging (stadium type, TNM classification).
Treatment (stadium type, tnm classificationsurgery date, chemotherapy, radiotherapy, hormone therapy, immunotherapy, other treatments, transplant, diagnostic class, therapeutic protocol, another therapeutic protocol, treatment abroad, type of treatment abroad, tara, end of therapy date, response to treatment, refusal, reason for refusal, abandon, dropout reason).
Tracking (date of last contact, status, the last doctor, death, the main cause, secondary cause).
Source of information: Reports from pediatric oncologic centers.
Data level: Patient-level.
Date range: 2009 onwards.
Data access: To require access to the patient-level database, it is necessary to send and e-mail to the address presented in the database page. It is also possible to simulate the access and see the available variables and search layout by inserting the login informations presented in the home page of the database website.
Cancer areas of interest: Unknown.
Information/contact for data request: Contact information.
Database: North-West Regional Cancer Registry
Sponsor, manager or home institution: Oncological Institute of Cluj (IOCN).
Primary purpose: Register the cases of cancer in the counties of Cluj, Bihor, Maramureş, Bistrita Năsăud, Sălaj, and Satu Mare to maintain epidemiological surveillance.
Type of information: The variables available to be registered by the sources in the database are: CNP, name, first name, date of birth, age, sex, county, city, address, date of cancer diagnosis, explication (reason for registering the diagnosis: hospitalization, death, biopsy, etc.), reason for reporting, registration base (data source).
Histopathological / cytological examination: Date of examination and result, tumor location, topographical code, laterality, behavior, morphological code, differentiation degree, stage type, TNM classification. Also informs if the cancer was detected by screening and if it is an interval cancer.
Treatment: Type of treatment, date of initiation. Informs if there was a refusal to the treatment.
Tracking: Date of last contact, name of the last doctor consulted, date of death, main cause and secondary cause of death.
Available type of information: Number of new cases of cancer by region, type of cancer, and year;
Annual incidence by 100.000 inhabitants by type of cancer, sex, region, and year;
Sexual rate (M/F) of new cases of cancer by region, type of cancer, and year;
Percentage distribution of new cases of cancer by region, type of cancer, sex, age group, and year;
Number of deaths by cancer by type of cancer, sex, and region (for the counties of Cluj and Bistriÿa-Nÿsÿud);
Crude rate of mortality by 100.000 inhabitants by sex and region (for the counties of Cluj and Bistriÿa-Nÿsÿud);
Standardized mortality rate by 100.000 inhabitants (related to the world population) by age, sex, and region (for the counties of Cluj and Bistriÿa-Nÿsÿud).
Source of Information: Pathology, hematology and immunology laboratories, outpatients offices, and oncology departments from private and public national cancer centers; Also receives information from death certificates, screening units and other registries.
Data level: Patient-level.
Available data level: Regional-level.
Number of Records: Unknown.
Date Range: Regarding the county of Cluj, information is available from 2000 onwards. There is data about other counties from 2008 onwards.
Cancer Areas of Interest: The list can be checked here. Some specific cancer locations are excluded, and those can be seen here.
Open data access: Some information is available in reports published here.
Data access: To request access to patient-level data, contact the Northwest Cancer Registry by the e-mail shown here.
Information/Contact for data request: Contact information
Databases for Clinical Trials, Surveys and Biobanks
Electronic Health Records
Clinical Practices Guidelines
Compilation: ESMO Patient Guides
Sponsor, manager or home institution: European Society for Medical Oncology
Primary purpose: To translate complex medical language into understandable information for patients.
Available guides: Adverse Reactions of Immunotherapy; Survival; CML;Colorectal Cancer; Endometrial Cancer; LAM; Follicular Lymphoma; Non-Small Cell Lung Cancer; Breast Cancer.
Type of information: Information on each guide varies for each cancer type. Generally, guides provide definitions, explanations of causes, diagnosis, treatment, treatment options, care after treatment, among others.
Access to information: List of guides [6].
