|
|
| (161 intermediate revisions by 5 users not shown) |
| Line 1: |
Line 1: |
| == [[Cancer Centers]] == | | <span style="display:none">forresearchers</span> |
| | <span style="display:none">forpatients</span> |
| | <span style="display:none">forproviders</span> |
| | <span style="display:none">forpolicymakers</span> |
| | <span style="display:none">portugalcountry</span> |
| | [https://wiki.beaconcancer.org/index.php?title=Cancer_Centers Go back to Cancer Centers list.] |
|
| |
|
| == [[Healthcare System]] == | | == Cancer Centers == |
| | <div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide"> |
|
| |
|
| Portugal provides universal healthcare to all its residents, including the unemployed and illegal immigrants. There are also health insurance schemes that provide coverage for specific sectors, both public and private. Citizens can also opt for private health insurance schemes. The system providing healthcare in Portugal is called Serviço Nacional de Saúde (SNS), managed by the Ministry of Health, and is mainly funded through general taxation, but a third of its funding comes from the private sector such as out-of-pocket payments via co-funding or direct payment by the patient.
| | [[hasCancerCenter::Instituto Português de Oncologia do Porto Francisco Gentil]] |
|
| |
|
| Primary care in Portugal is delivered through a combination of public and private healthcare providers, with the National Health Service (NHS) primarily offering primary and acute general and specialized hospital care. While dental consultations, diagnostic services, renal dialysis, and rehabilitation services are mostly offered by private healthcare providers, these services are often funded by the government under contractual agreements with the NHS. Secondary and tertiary care is mainly provided in hospitals organized into Hospital Centres based on geographical location.
| | [[hasCancerCenter::Instituto Português de Oncologia de Lisboa Francisco Gentil]] |
|
| |
|
| Portugal's main statistical authority is the Instituto Nacional de Estatística (INE), responsible for the production and dissemination of official statistics that ensure the supervision and the technical and scientific coordination of the National Statistical System.
| | [[hasCancerCenter::Instituto Português de Oncologia de Coimbra Francisco Gentil]] |
|
| |
|
| == [[Administrative or Claims Data]] ==
| | </div> |
|
| |
|
| === Database: Diagnosis Related Groups (GDH) === | | == [[hasHealthcareSystem::Healthcare_System_(Portugal)|Healthcare System]] == |
| [https://www2.acss.min-saude.pt/DepartamentoseUnidades/DepartamentoGest%C3%A3oeFinanciamentoPrestSa%C3%BAde/SClassifica%C3%A7%C3%A3oDoentes/GruposdeDiagn%C3%B3sticosHomog%C3%A9neos/tabid/460/language/pt-PT/Default.aspx [1]]
| | <div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide"> |
| | </div> |
|
| |
|
| '''Primary purpose:''' Collect and make available information regarding the use of resources related to inpatient care.
| | == Administrative or Claims Data == |
| | <div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide"> |
|
| |
|
| '''Sponsor, manager or home institution''': Serviço Nacional de Saúde (SNS) and Administração Central do Sistema de saúde (ACSS).
| | === [[hasDatabase::Database:_Health_Care_Personnel_Statistics_(Portugal)|Database: Health Care Personnel Statistics]] === |
|
| |
|
| '''Type of information''': Presents number of outpatients, equivalent patients, and average delay considering the following variables: Hospitalization, Surgical hospitalization, Medical ICU, Outpatient, Surgical Outpatient, % Outpatient Surgical/Total Scheduled Surgical, and Medical Outpatient.
| | </div> |
|
| |
|
| Patient level data includes the following variables: Hospital code, gender, date of admission, services codes, date of entry into services, date of exit from services, admission diagnosis, main diagnosis, secondary diagnoses, cause of admission, procedures, tumor morphology code, destination after discharge code, birth weight, number of days in preoperative period, type of admission, total days, age, GDH code, major diagnosis category code, date of surgery, transfer reason code, discharge date, area of residence code.
| | == Registries == |
| | <div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide"> |
|
| |
|
| '''Source of information''': Portugal's hospitals.
| | === [[hasDatabase::Database:_Mortality_by_Malignant_Neoplasms_(Portugal)|Database: Mortality by Malignant Neoplasms]] === |
|
| |
|
| '''Data level''': Hospital level (open access) and patient level (restricted access).
| | === [[hasDatabase::Database:_Cancer_Screening_Monitoring_(Portugal)|Database: Cancer Screening Monitoring]] === |
|
| |
|
| '''Number of Records:''' Unknown.
| | === [[hasDatabase::Database:_National_Cancer_Registry_(RON)_(Portugal)|Database: National Cancer Registry (RON)]] === |
| | </div> |
|
| |
|
| '''Date range''': 2011 - 2014 (open access), and 1993 onwards (restricted access).
| | == Databases for Clinical Trials, Surveys and Biobanks == |
| | <div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide"> |
|
| |
|
| '''Cancer Areas of Interest:'''
| | === [[hasDatabase::Survey:_National_Health_Interview_Survey_(INS)_(Portugal)|Survey: National Health Interview Survey (INS)]] === |
|
| |
|
| '''Data access''': Hospital level information can be accessed [https://www2.acss.min-saude.pt/DepartamentoseUnidades/DepartamentoGest%C3%A3oeFinanciamentoPrestSa%C3%BAde/SClassifica%C3%A7%C3%A3oDoentes/GruposdeDiagn%C3%B3sticosHomog%C3%A9neos/Produ%C3%A7%C3%A3oNacional/tabid/922/language/pt-PT/Default.aspx here]. To require access to Patient level data, follow the instructions presented in [https://www.acss.min-saude.pt/2017/09/18/pedido_informacao/ this] website.
| | </div> |
|
| |
|
| '''Information/contact for data request''': [https://www2.acss.min-saude.pt/Institucional/Contactos/tabid/95/language/pt-PT/Default.aspx Contact information].
| | == Clinical Practices Guidelines == |
| | <div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide"> |
|
| |
|
| == [[Registries]] == | | === [[hasClinicalGuidelines::Guidelines: SPED National Guidelines Compilation (Portugal)|Guidelines: SPED National Guidelines Compilation]] === |
| === [https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_indicadores&indOcorrCod=0008461&xlang=pt&contexto=bd&selTab=tab2 Database: Mortality by Malignant Neoplasms] ===
| | </div> |
| [https://www.ine.pt/ngt_server/attachfileu.jsp?look_parentBoui=259457183&att_display=n&att_download=y [2]] [https://www.ine.pt/bddXplorer/htdocs/minfo.jsp?var_cd=0008461&lingua=EN [3]]
| |
|
| |
|
| '''Primary purpose:''' Provide information regarding the national mortality and its social and demographic distribution.
| | == Latest Policymaking Initiatives == |
| | <div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide"> |
|
| |
|
| '''Sponsor, manager or home institution''': Instituto Nacional de Estatística (INE).
| | === [[hasReport::Reports:_National_Health_Statistics_(Portugal)|Reports: National Health Statistics]] === |
|
| |
|
| '''Type of information''': Reference year; Birthplace district; County of fact; Conservatory; Order number; Main cause of death; External cause of death; Mandatory declaration; Date of death; Month of death; Year of death; Location. The cause of death was indicated based on: Sex; Age in days; Age in months; Age in years; Date of birth; Month of birth; Year of birth; Marital status; Nationality; Country of origin; District of residence; County of residence; Parish of residence; Country of residence; Condition before work; Profession; Status in the profession; Field of activity; Wedding month; Wedding year; Spouse's age; Total number of children; Children still alive; Age 0 to 4 years; Age 5 to 9 years; Age 10 to 17 years; Age 18 and over; Affiliation; Mother's date of birth; Mother's birth month; Mother's year of birth; Father's date of birth; Father's birth month; Father's year of birth; Mother's education level; Father's education level; Mother's condition before work; Father's condition before work; Mother's profession; Father's profession; Mother's career status; Father's career status; Mother's field of activity; Father's field of activity; Length of marriage; Mother's age; Father's age; County of birth; Country of birth; Type of death; Type of unnatural death; Instruction of the deceased; Date of wedding; Leading 3-digit cause of death; 3-digit external cause of death; Main cause of death letter; Main cause of death number; External cause of death letter; External cause of death number; Mandatory notifiable diseases; NUTS 1 - 2001; NUTS 2 - 2001; NUTS 3 - 2001; Grand total; N1_new; N2_new; N3_new; NUTS-I 2013; NUTS-II 2013; NUTS-III 2013; Five-year age group up to 95 years; Decennial age group up to 90 years; Age group applied to HIV/AIDS. Total: Age group applied to Alzheimer's; Professions aggregated by CNP 2010; Age ranges of infants; Age of children; Five-year age group up to 85 years; Age in intervals; Chapters; Age groups; Decennial age groups; OECD age groups; Binned age in years.
| | === [[hasReport::Report:_National_Health_Service_(Portugal)|Report: National Health Service]] === |
|
| |
|
| The list of variables included in Patient level data is longer and can be checked in [https://www.ine.pt/xportal/xmain?ine_smenu.boui=161302718&contexto=fct&xpgid=ine_bd_inv_fct&ine_smenu.selected=161302852&xpid=INE&selTab=fct this] website.
| | === [[hasReport::Report:_National_Cancer_Registry_(RON)_(Portugal)|Report: National Cancer Registry (RON)]] === |
|
| |
|
| '''Available type of information:''' Number of deaths filtered by data reference period, region of residence, sex, age group, and death cause (malignant neoplasms).
| | === [[hasReport::Report:_Southern_Regional_Oncology_Registry_(ROR-Sul)_(Portugal)|Report: Southern Regional Oncology Registry (ROR-Sul)]] === |
|
| |
|
| The following indicators are also available and can be filtered by sex and region of residence:
| | === [[hasReport::Report:_Northern_Regional_Oncology_Registry_(RORENO)_(Portugal)|Report: Northern Regional Oncology Registry (RORENO)]] === |
|
| |
|
| *[https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_indicadores&indOcorrCod=0003990&xlang=pt&contexto=bd&selTab=tab2 Potential years of life lost by type of cancer].
| | === [[hasReport::Report:_Centro_Regional_Oncology_Registry_(ROR-Centro)_(Portugal)|Report: Centro Regional Oncology Registry (ROR-Centro)]] === |
| *[https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_indicadores&indOcorrCod=0003824&xlang=pt&contexto=bd&selTab=tab2 Rate of potential years of life lost (per 100 000 inhabitants) by type of cancer].
| |
| *[https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_indicadores&indOcorrCod=0008709&xlang=pt&contexto=bd&selTab=tab2 Mortality rate (per 100 000 inhabitants or in percentage) by type of cancer].
| |
| *[https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_indicadores&indOcorrCod=0003796&xlang=pt&contexto=bd&selTab=tab2 Standardized mortality rate (per 100 000 inhabitants) by type of cancer].
| |
| *[https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_indicadores&indOcorrCod=0005069&xlang=pt&contexto=bd&selTab=tab2 Standardized mortality rate (per 100 000 inhabitants) by type of cancer regarding people 65 years of age and older.]
| |
| *[https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_indicadores&indOcorrCod=0005043&xlang=pt&contexto=bd&selTab=tab2 Standardized mortality rate (per 100 000 inhabitants) by type of cancer regarding people younger than 65 years of age].
| |
|
| |
|
| '''Source of information''': Data collection through the notary offices and registered in the Integrated System for Civil Registration and Identification (SIRIC).
| | === [[hasReport::Report:_National_Commission_for_Palliative_Care_(CNCP)_(Portugal)|Report: National Commission for Palliative Care (CNCP)]] === |
|
| |
|
| '''Data level''': Regional level (open access) and Patient level (restricted access).
| | === [[hasReport::Report:_EU_Country_Cancer_Profile_2023_(Portugal)|Report: EU Country Cancer Profile 2023]] === |
|
| |
|
| '''Number of Records:''' Unknown.
| | === [[hasReport::Report:_EU_Country_Cancer_Profile_2025_(Portugal)|Report: EU Country Cancer Profile 2025]] === |
|
| |
|
| '''Date range''': Regional level (2002 onwards) and Patient level (1998 onwards).
| | === [[hasReport::Report:_National_Strategy_to_Fight_Cancer,_2030_horizon_(Portugal)|Report: National Strategy to Fight Cancer, 2030 horizon]] === |
| | </div> |
|
| |
|
| '''Cancer Areas of Interest:''' To be added.
| | == Cancer-related Patient Associations and Resources == |
| | <div class="mw-collapsible" data-expandtext="Show" data-collapsetext="Hide"> |
|
| |
|
| '''Data access''': Regional level data is openly available [https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_indicadores&indOcorrCod=0008461&selTab=tab0 here]. To ask for patient level data, follow the instructions presented in [https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_serv_clientes&INST=161301979&ine_smenu.boui=161302718&ine_smenu.selected=161302852 this] webpage.
| | === [[hasPatientAssociation::Patient Association: Liga Portuguesa Contra o Cancro (Europa Donna Portugal) (Portugal)|Patient Association: Liga Portuguesa Contra o Cancro (Europa Donna Portugal)]] === |
|
| |
|
| '''Information/contact for data request''': [https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_cont_inst&ine_smenu.boui=13711615&INST=56501 Contact information].
| | === [[hasPatientAssociation::Patient Association: Patient Associations Compilation (Portugal)|Patient Association: Patient Associations Compilation]] === |
|
| |
|
| === [https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_indicadores&indOcorrCod=0008465&xlang=pt&contexto=bd&selTab=tab2 Database: Health Care Personnel Statistics] === | | === [[hasPatientGuides::Patient Guides: ESMO Patient Guides Compilation (Portugal)|Patient Guides: ESMO Patient Guides Compilation]] === |
| [https://smi.ine.pt/UploadFile/Download/370 [4]]
| |
|
| |
|
| '''Primary purpose:''' Publish statistics on the number of health professionals registered in the professional organizations.
| | === [[hasPatientResource::Self-help_Group:_Careca_Power_(Portugal)|Self-help Group: Careca Power]] === |
| | </div> |
|
| |
|
| '''Sponsor, manager or home institution''': Instituto Nacional de Estatística (INE).
| | == [[hasQoLandPalliativeCareResearch::Quality_of_Life_and_Palliative_Care_Research_(Portugal)|Quality of Life and Palliative Care Research]] == |
|
| |
|
| '''Type of information''': Number of medical specialists filtered by place of residence, gender and specialty, subspecialty or competence. Considering cancer area, the database presents information about the number of medical and pediatric oncology professionals.
| | __NOTOC__ |
| | | <span style="display:none">hasCancerCenter::Instituto Português de Oncologia do Porto Francisco Gentil</span> |
| '''Source of information''': Regarding the information about oncologists, the source is the Medical Association.
| | <span style="display:none">hasCancerCenter::Instituto Português de Oncologia de Lisboa Francisco Gentil</span> |
| | | <span style="display:none">hasCancerCenter::Instituto Português de Oncologia de Coimbra Francisco Gentil</span> |
| '''Data level''': Regional level.
| | <span style="display:none">hasHealthcareSystem::Healthcare_System_(Portugal)|Healthcare System</span> |
| | | <span style="display:none">hasDatabase::Database:_Hospital_Morbidity_Database_(Portugal)|Database: Hospital Morbidity Database</span> |
| '''Number of Records:''' Unknown.
| | <span style="display:none">hasDatabase::Database:_Health_Care_Personnel_Statistics_(Portugal)|Database: Health Care Personnel Statistics</span> |
| | | <span style="display:none">hasDatabase::Database:_Mortality_by_Malignant_Neoplasms_(Portugal)|Database: Mortality by Malignant Neoplasms</span> |
| '''Date range''': 2011 onwards.
| | <span style="display:none">hasDatabase::Database:_Cancer_Screening_Monitoring_(Portugal)|Database: Cancer Screening Monitoring</span> |
| | | <span style="display:none">hasDatabase::Database:_National_Cancer_Registry_(RON)_(Portugal)|Database: National Cancer Registry (RON)</span> |
| '''Cancer Areas of Interest:''' Unknown.
| | <span style="display:none">hasDatabase::Survey:_National_Health_Interview_Survey_(INS)_(Portugal)|Survey: National Health Interview Survey (INS)</span> |
| | | <span style="display:none">hasClinicalGuidelines::Compilation:_SPED_National_Guidelines_(Portugal)|Compilation: SPED National Guidelines</span> |
| '''Data access''': Open access in [https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_indicadores&indOcorrCod=0008465&xlang=pt&contexto=bd&selTab=tab2 this] webpage.
| | <span style="display:none">hasReport::Reports:_National_Health_Statistics_(Portugal)|Reports: National Health Statistics</span> |
| | | <span style="display:none">hasReport::Report:_National_Health_Service_(Portugal)|Report: National Health Service</span> |
| '''Information/contact for data request''': [https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_cont_inst&ine_smenu.boui=13711615&INST=56501 Contact information].
| | <span style="display:none">hasReport::Report:_National_Cancer_Registry_(RON)_(Portugal)|Report: National Cancer Registry (RON)</span> |
| | | <span style="display:none">hasReport::Report:_Southern_Regional_Oncology_Registry_(ROR-Sul)_(Portugal)|Report: Southern Regional Oncology Registry (ROR-Sul)</span> |
| <!-- === Database: Cancer Screening === | | <span style="display:none">hasReport::Report:_Northern_Regional_Oncology_Registry_(RORENO)_(Portugal)|Report: Northern Regional Oncology Registry (RORENO)</span> |
| | | <span style="display:none">hasReport::Report:_Centro_Regional_Oncology_Registry_(ROR-Centro)_(Portugal)|Report: Centro Regional Oncology Registry (ROR-Centro)</span> |
| '''Primary purpose:''' Promote the early diagnosis of cancer in order to start treatment early and thus decrease the national cancer mortality rate.
| | <span style="display:none">hasReport::Report:_National_Commission_for_Palliative_Care_(CNCP)_(Portugal)|Report: National Commission for Palliative Care (CNCP)</span> |
| | | <span style="display:none">hasReport::Report:_EU_Country_Cancer_Profile_2023_(Portugal)|Report: EU Country Cancer Profile 2023</span> |
| '''Sponsor, manager or home institution''': Direção Geral da Saúde (DGS).
| | <span style="display:none">hasReport::Report:_National_Strategy_to_Fight_Cancer,_2030_horizon_(Portugal)|Report: National Strategy to Fight Cancer, 2030 horizon</span> |
| | | <span style="display:none">hasPatientAssociation::Patient_Associations_(Portugal)|Patient Associations</span> |
| '''Type of information''': Information regarding breast, cervical, colon and rectal cancer screening. Examples of available data are the screening adherence rate, test positivity rate, geographic coverage rate, coverage rate by region, number of eligible population.
| | <span style="display:none">hasPatientGuides::Compilation:_ESMO_Patient_Guides_(Portugal)|Compilation: ESMO Patient Guides</span> |
| | | <span style="display:none">hasQoLandPalliativeCareResearch::Quality_of_Life_and_Palliative_Care_Research_(Portugal)|Quality of Life and Palliative Care Research</span> |
| '''Source of information''': Forms filled out by the regional Health Administrations and the Autonomous Regions of Portugal.
| | <span style="display:none">hasClinicalGuidelines::Compilation:_SPED_National_Guidelines_(Portugal)|Guidelines: SPED National Guidelines Compilation</span> |
| | | <span style="display:none">hasClinicalGuidelines::Guidelines: SPED National Guidelines Compilation (Portugal)|Guidelines: SPED National Guidelines Compilation</span> |
| '''Data level''': Regional level.
| | <span style="display:none">hasPatientGuides::Patient Guides: ESMO Patient Guides Compilation (Portugal)|Patient Guides: ESMO Patient Guides Compilation</span> |
| | | <span style="display:none">hasCancerType::C00-D48: All neoplasms</span> |
| '''Number of Records:'''
| | <span style="display:none">hasCancerType::C00-C97: All cancer types</span> |
| | | <span style="display:none">hasCancerType::C00-C14: Mouth/throat cancers</span> |
| '''Date range''': The project occurs 1990 onwards. Data is available 2015 onwards.
| | <span style="display:none">hasCancerType::C15-C26: Digestive system cancers</span> |
| | | <span style="display:none">hasCancerType::C30-C39: Lung/chest cancers</span> |
| '''Cancer Areas of Interest:''' Breast, cervical, colon and rectal cancer.
| | <span style="display:none">hasCancerType::C40-C41: Bone cancers</span> |
| | | <span style="display:none">hasCancerType::C43-C44: Skin cancers/melanoma</span> |
| '''Data access''':
| | <span style="display:none">hasCancerType::C45-C49: Soft tissue cancer</span> |
| | | <span style="display:none">hasCancerType::C50: Breast cancer</span> |
| '''Information/contact for data request''': [ Contact information].
| | <span style="display:none">hasCancerType::C51-C58: Female genitalia cancers</span> |
| -->
| | <span style="display:none">hasCancerType::C60-C63: Male genitalia cancer</span> |
| === Database: Cancer Incidence, Survival and Mortality in the Southern Region of Portugal (ISM) === | | <span style="display:none">hasCancerType::C64-C68: Urinary system cancers</span> |
| [https://ron.min-saude.pt/media/2200/ror_sul_ism_2016_17.pdf [5]]
| | <span style="display:none">hasCancerType::C69-C72: Eye and brain cancer</span> |
| | | <span style="display:none">hasCancerType::C73-C75: Thyroid and other gland cancers</span> |
| '''Primary purpose:''' Inform about cancer statistics regarding the south region of Portugal. Gathers information about the following regions: health regions of Lisboa e Vale do Tejo (LVT), Alentejo, Algarve and the Autonomous Region of Madeira.
| | <span style="display:none">hasCancerType::C76-C80: Cancers of unknown or unspecified areas</span> |
| | | <span style="display:none">hasCancerType::C81-C96: Cancers of the blood and immune system</span> |
| '''Sponsor, manager or home institution''': National Cancer Registry (RON) and Regional Oncology Registry South (ROR-Sul).
| | <span style="display:none">hasCancerType::C97-C97: Cancers in multiple locations from the start</span> |
| | | <span style="display:none">hasCancerType::D00-D09: Early-stage cancers not yet spread</span> |
| '''Type of information''': Survival (by gender and age) and Incidence rates (specific, crude and standardized for age, sex, and tumor location per 100,000 people) with tables and graphs
| | <span style="display:none">hasCancerType::D10-D36: Benign tumour</span> |
| | | <span style="display:none">hasCancerType::D37-D48: Growths of uncertain nature</span> |
| Presents also mortality rates (specific, crude and standardized for age, by malignant tumor and sex) information from INE.
| | <span style="display:none">hasCancerType::unknown</span> |
| | |
| Patient level information contains identification fields (example: name, gender, date of birth or age, and address); diagnosis, tumor and treatment fields (diagnosis dates, basis of diagnosis, primary location, histologic type, behavior, stage, treatment start date and treatment sequence); follow-up fields (patient vital status, date and cause of death).
| |
| | |
| '''Source of information''': Data from public and private health institutions of the region.
| |
| | |
| '''Data level''': Regional level (open access) and Patient level (restrict acess).
| |
| | |
| '''Number of Records:''' Unknown.
| |
| | |
| '''Date range''': Regional level is presented from 2002 to 2017, and 1998* - 2000/2001*.
| |
| Patient level date range is unknown.
| |
| | |
| (*Only includes cancer incidence data) | |
| | |
| '''Cancer Areas of Interest:''' The list can be checked at the page 25 of [https://ron.min-saude.pt/media/2200/ror_sul_ism_2016_17.pdf this] document.
| |
| | |
| '''Data access''': Reports with regional data can be accessed through the national miscellaneous publications section on the National Cancer Registry website, at [https://ron.min-saude.pt/pt/biblioteca/publicacoes-diversas/nacionais/?page=1 this] link.
| |
| | |
| To access patient level data, it is necessary to fill [https://ron.min-saude.pt/media/2198/ron_comissao_formulario_v2.pdf this] document and send to the address presented in it.
| |
| | |
| '''Information/contact for data request''': [https://www.dgs.pt/site/contactos.aspx Contact information].
| |
| | |
| === Database: Cancer Survival and Incidence in the Northern Region of Portugal ===
| |
| [https://ron.min-saude.pt/media/1578/sobreviv%C3%AAncia-2009-2010.pdf [6]] [https://ron.min-saude.pt/media/1576/roreno-2011.pdf [7]]
| |
| | |
| '''Primary purpose:''' Inform about cancer statistics regarding the south region of Portugal. Gathers information about the following districts: Braga, Bragança, Porto, Viana do Castelo and Vila Real.
| |
| | |
| '''Sponsor, manager or home institution''': National Cancer Registry (RON) and Northern Regional Oncology Registry (RORENO).
| |
| | |
| '''Type of information''': Cancer survival (overall, observed, net, standardized, by gender, type of tumor, time since diagnosis, age, and region of residence) for people over 15 years old.
| |
| | |
| Cancer incidence (crude number, crude and standardized rate per 100,000, by sex, age, and tumor location).
| |
| | |
| Patient level information contains identification fields (example: name, gender, date of birth or age, and address); diagnosis, tumor and treatment fields (diagnosis dates, basis of diagnosis, primary location, histologic type, behavior, stage, treatment start date and treatment sequence); follow-up fields (patient vital status, date and cause of death).
| |
| | |
| '''Source of information''': Data from public and private health institutions of the region.
| |
| | |
| '''Data level''': Regional level (open access) and Patient level (restrict acess).
| |
| | |
| '''Number of Records:''' Unknown.
| |
| | |
| '''Date range''': Incidence is presented from 1988 to 2011. Survival ranges from 2005 to 2010.
| |
| | |
| '''Cancer Areas of Interest:''' Survival - all tumors except basal cellular and squamous cell tumors of the skin.
| |
| Incidence - all tumors except basal cell carcinomas and nonspecific tumors of the skin.
| |
| | |
| '''Data access''': Reports with regional data can be accessed through the national miscellaneous publications section on the National Cancer Registry website, at [https://ron.min-saude.pt/pt/biblioteca/publicacoes-diversas/nacionais/?page=1 this] link.
| |
| | |
| To access patient level data, it is necessary to fill [https://ron.min-saude.pt/media/2198/ron_comissao_formulario_v2.pdf this] document and send to the address presented in it.
| |
| | |
| '''Information/contact for data request''': [https://www.dgs.pt/site/contactos.aspx Contact information].
| |
| | |
| === Database: Cancer Survival and Incidence in the Central Region of Portugal === | |
| [https://ron.min-saude.pt/media/2073/publica%C3%A7%C3%A3o-2010.pdf [8]]
| |
| | |
| '''Primary purpose:''' Inform about cancer statistics regarding the south region of Portugal. Gathers information about the following districts: Aveiro, Castelo Branco, Coimbra, Guarda, Leiria e Viseu.
| |
| | |
| '''Sponsor, manager or home institution''': National Cancer Registry (RON) and Central zone regional oncology registry (ROR-Centro).
| |
| | |
| '''Type of information''': Cancer incidence (gross number, gross rate, overall and standardized per 100,000, by sex, age and tumor location).
| |
| | |
| Patient level information contains identification fields (example: name, gender, date of birth or age, and address); diagnosis, tumor and treatment fields (diagnosis dates, basis of diagnosis, primary location, histologic type, behavior, stage, treatment start date and treatment sequence); follow-up fields (patient vital status, date and cause of death).
| |
| | |
| '''Source of information''': Data from public and private health institutions of the region.
| |
| | |
| '''Data level''': Regional level (open access) and Patient level (restrict acess).
| |
| | |
| '''Number of Records:''' Unknown.
| |
| | |
| '''Date range''': 1989 - 2010.
| |
| | |
| '''Cancer Areas of Interest:''' List is available at the page 3 of [https://ron.min-saude.pt/media/2073/publicação-2010.pdf this] document.
| |
| | |
| '''Data access''': Reports with regional data can be accessed through the national miscellaneous publications section on the National Cancer Registry website, at [https://ron.min-saude.pt/pt/biblioteca/publicacoes-diversas/nacionais/?page=1 this] link.
| |
| | |
| To access patient level data, it is necessary to fill [https://ron.min-saude.pt/media/2198/ron_comissao_formulario_v2.pdf this] document and send to the address presented in it.
| |
| | |
| '''Information/contact for data request''': [https://www.dgs.pt/site/contactos.aspx Contact information].
| |
| | |
| === Database: Cancer Incidence in Portugal === | |
| [https://ron.min-saude.pt/media/2214/ron-2019_new_v8f.pdf [9]]
| |
| | |
| '''Primary purpose:''' Inform about cancer statistics regarding all regions of Portugal.
| |
| | |
| '''Sponsor, manager or home institution''': National Cancer Registry (RON).
| |
| | |
| '''Type of information''': Number of new cancer cases by age, sex, tumor site, and place of residence.
| |
| | |
| Specific, crude and standardized cancer incidence rates per 100,000 persons for age, place of residence, sex and tumor location. Covers the entire territory of Portugal.
| |
| | |
| Patient level information contains identification fields (example: name, gender, date of birth or age, and address); diagnosis, tumor and treatment fields (diagnosis dates, basis of diagnosis, primary location, histologic type, behavior, stage, treatment start date and treatment sequence); follow-up fields (patient vital status, date and cause of death).
| |
| | |
| It also presents mortality data by tumor type, age, sex.
| |
| | |
| '''Source of information''': Data from public and private health institutions in Portugal.
| |
| | |
| '''Data level''': Regional level (open access) and Patient level (restrict acess).
| |
| | |
| '''Number of Records:''' Unknown.
| |
| | |
| '''Date range''': 2001 - 2019.
| |
| | |
| '''Cancer Areas of Interest:'''
| |
| | |
| '''Data access''': Reports with regional data can be accessed through the RON publications section on the National Cancer Registry website, at [https://ron.min-saude.pt/pt/biblioteca/publicacoes-ron/ this] link.
| |
| | |
| To access patient level data, it is necessary to fill [https://ron.min-saude.pt/media/2198/ron_comissao_formulario_v2.pdf this] document and send to the address presented in it.
| |
| | |
| '''Information/contact for data request''': [https://www.dgs.pt/site/contactos.aspx Contact information].
| |
| <!-- | |
| === [ Database: ] ===
| |
| | |
| '''Primary purpose:'''
| |
| | |
| '''Sponsor, manager or home institution''':
| |
| | |
| '''Type of information''':
| |
| | |
| '''Source of information''':
| |
| | |
| '''Data level''':
| |
| | |
| '''Number of Records:'''
| |
| | |
| '''Date range''':
| |
| | |
| '''Cancer Areas of Interest:'''
| |
| | |
| '''Data access''':
| |
| | |
| '''Information/contact for data request''': [ Contact information].
| |
| -->
| |
| | |
| == [[Databases for Clinical Trials, Surveys and Biobanks]] ==
| |
| | |
| === Survey: National Health Interview Survey (INS)===
| |
| [https://www.ine.pt/ngt_server/attachfileu.jsp?look_parentBoui=451800443&att_display=n&att_download=y [10]]
| |
| | |
| '''Primary purpose:''' Publish statistics on health status, health care and health determinants, and socio-demographic characteristics of the population to enable the study and improvement of these areas.
| |
| | |
| '''Sponsor, manager or home institution''': Instituto Nacional de Estatística (INE).
| |
| | |
| '''Type of information''': Regarding cancer prevention information, contains the percentage of the female resident population aged 50 to 69 years who reported having had mammography done in the 2 years prior to the interview and the female resident population aged 20 to 69 years who reported having had cervical cytology done in the 3 years prior to the interview, both filtered by education level and region of residence.
| |
| | |
| The list of variables included in Patient level data is longer and can be checked in [https://www.ine.pt/xportal/xmain?ine_smenu.boui=161302718&contexto=fct&xpgid=ine_bd_inv_fct&ine_smenu.selected=161302852&xpid=INE&selTab=fct this website].
| |
| | |
| '''Source of information''': Instituto Nacional de Estatística (INE)
| |
| | |
| '''Data level''': National level (open access) and Patient level (restricted access).
| |
| | |
| '''Number of Records:''' Unknown.
| |
| | |
| '''Date range''': 2005 onwards. It occurs on a five-year basis.
| |
| | |
| '''Cancer Areas of Interest:''' Breast and cervix neoplasms.
| |
| | |
| '''Data access''': Mammography examination by [https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_indicadores&indOcorrCod=0008934&xlang=pt&contexto=bd&selTab=tab2 education level] and region of residence ([https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_indicadores&indOcorrCod=0008052&xlang=pt&contexto=bd&selTab=tab2 2005] and [https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_indicadores&indOcorrCod=0008812&xlang=pt&contexto=bd&selTab=tab2 2014 onwards]); Cervical cytology by [https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_indicadores&indOcorrCod=0008925&xlang=pt&contexto=bd&selTab=tab2 education level] and region of residence ([https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_indicadores&indOcorrCod=0008051&xlang=pt&contexto=bd&selTab=tab2 2005] and [https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_indicadores&indOcorrCod=0008813&xlang=pt&contexto=bd&selTab=tab2 2014 onwards]).
| |
| | |
| '''Information/contact for data request''': [https://www.ine.pt/xportal/xmain?xpid=INE&xpgid=ine_cont_inst&ine_smenu.boui=13711615&INST=56501 Contact information].
| |
| | |
| == [[Electronic Health Records]] ==
| |
| | |
| == [[Clinical Practices Guidelines]] ==
| |
| | |
| == [[Latest Policymaking Initiatives]] ==
| |
| | |
| == [[Cancer-related Patient Associations and Resources]] ==
| |