scholarly journals Monitoring public health reporting: data tracking in cancer registries

2018 ◽  
Vol 10 (3) ◽  
Author(s):  
Abdulrahman Jabour ◽  
Brian Dixon
Keyword(s):  
Cancer Registry ◽  
Cancer Control ◽  
Cancer Registries ◽  
Performance Measure ◽  
Data Availability ◽  
Public Health Reporting ◽  
Reporting Process ◽  
The Difference ◽  
The Individual ◽  
Cancer Reporting

Introduction: Timeliness of data availability is a key performance measure in cancer reporting. Previous studies evaluated timeliness of cancer reporting using a single metric, yet this metric obscures the details within each step of the reporting process. To enhance understanding of cancer reporting processes, we measured the timeliness of discrete cancer reporting steps and examined changes in timeliness across a decade.Methods: We analyzed 76,259 cases of breast, colorectal and lung cancer reported to the Indiana State Cancer Registry between 2001 and 2011. We measured timeliness for three fundamental reporting steps: report completion time, report submission time, and report processing time. Timeliness was measured as the difference, in days, between timestamps recorded in the cancer registry at each step. We further examined the reporting pattern among facilities within each step.Results: Identifying and gathering details about cases (report completion) accounts for the largest proportion of time during the cancer reporting process. Although submission time accounts for a lesser proportion of time, there is wide variation among facilities. One-seventh (7 out of 49) facilities accounted for 28.4% of the total cases reported, all of which took more than 100 days to submit the completed cases to the registry.Conclusions: Measuring timeliness of the individual steps in reporting processes can enable cancer registry programs to target individual facilities as well as tasks that could be improved to reduce overall case reporting times. Process improvement could strengthen cancer control programs and enable more rapid discovery in cancer research.

scholarly journals What are cancer registries

2004 ◽  
Vol 57 (1-2) ◽  
pp. 27-29
Author(s):  
Marica Miladinov-Mikov
Keyword(s):  
Cancer Registry ◽  
Geographical Area ◽  
Cancer Control ◽  
Cancer Registries ◽  
Population Based ◽  
International Agency ◽  
World Population ◽  
The World ◽  
The Individual ◽  
The Impact

Introduction Population-based cancer registries attempt to collect, process, analyze, store and interpret data on persons with cancer in a certain population (most frequently a geographical area). Hospital-based cancer registries register all cases in a given hospital, usually without knowledge of the background population; the emphasis is to serve the needs of the hospital administration, the hospital cancer program, and, above all, the individual patient. History of Cancer Registries Registration of persons suffering from cancer is a slow process. Around the year 1900, England and Germany demanded improvement of statistical investigation on spread of cancer in population in order to undertake etiological researches. The oldest example of a modern cancer registry is that in Hamburg. Today there are more than 200 population-based cancer registries, but they cover only 5% of the world population, mainly in developed countries of the world. Cancer registry of Vojvodina Cancer registry of Vojvodina was established in 1966; it is a member of International Agency for Research on Cancer (IARC) and it is still the only cancer registry from our country whose data are cited in scientific monographs of IARC. The main purpose of cancer registries is to produce statistics on the occurrence of cancer in a defined populatin and to provide a framework for assessing and controlling the impact of cancer on the community. Cancer registries are essential parts of any rational program of cancer control. Their data can be used in a wide variety of areas of cancer control, ranging from etiological research in epidemiology, through primary and secondary prevention to health-care planning and patient care, so benefiting both the individual and society.

Next Generation of Central Cancer Registries

2021 ◽  
pp. 288-294
Author(s):  
Paul Wormeli ◽  
Jenna Mazreku ◽  
Jeremy Pine ◽  
Mark Damesyn
Keyword(s):  
Local Level ◽  
Cancer Control ◽  
Relevant Information ◽  
Cancer Registries ◽  
Data Availability ◽  
Cancer Case ◽  
Technical Standards ◽  
Data Set ◽  
Current Time ◽  
Cancer Data

For central cancer registries to become a more significant public health resource, they must evolve to capture more timely, accurate, and extensive data. Key stakeholders have called for a faster time to deliver work products, data extensions such as social determinants of health, and more relevant information for cancer control programs at the local level. The proposed model consists of near real-time reporting stages to replace the current time and labor-intensive efforts to populate a complete cancer case abstract on the basis of the 12- and 24-month data submission timelines. The first stage collects a cancer diagnosis minimum data set sufficient to describe population incidence and prevalence, which is then followed by a second stage capturing subsequent case updates and treatment data. A third stage procures targeted information in response to identified research projects' needs. The model also provides for further supplemental reports as may be defined to gather additional data. All stages leverage electronic health records' widespread development and the many emerging standards for data content, including national policies related to healthcare and technical standards for interoperability, such as the Fast Healthcare Interoperability Resources specifications to automate and accelerate reporting to central cancer registries. The emergence of application programming interfaces that allow for more interoperability among systems would be leveraged, leading to more efficient information sharing. Adopting this model will expedite cancer data availability to improve cancer control while supporting data integrity and flexibility in data items. It presents a long-term and feasible solution that addresses the extensive burden and unsustainable manual data collection requirements placed on Certified Tumor Registrars at disease reporting entities nationally.

scholarly journals Establishing a Cancer Registry in a Resource-Constrained Region: Process Experience From Ghana

2020 ◽  
pp. 610-616
Author(s):  
Joel Yarney ◽  
Naomi O. Ohene Oti ◽  
Benedict N. L. Calys-Tagoe ◽  
Richard K. Gyasi ◽  
Isaac Agyeman Duah ◽  
...  
Keyword(s):  
Cancer Registry ◽  
Good Governance ◽  
Focal Point ◽  
Cancer Control ◽  
Cancer Registries ◽  
Lessons Learned ◽  
External Support ◽  
Administrative Structure ◽  
Policy Document ◽  
Control Plan

PURPOSE In a review of cancer incidence across continents (GLOBOCAN 2012), data sources from Ghana were classified as Frequencies, the lowest classification for inclusion, signifying the worst data quality for inclusion in the analysis. Recognizing this deficiency, the establishment of a population-based cancer registry was proposed as part of a broader cancer control plan. METHODS The registry was examined under the following headings: policy, data source, and administrative structure; external support and training; and definition of geographic coverage. RESULTS The registry was set up based on the Ghana policy document on the strategy for cancer control. The paradigm shift ensured subscription to one data collection software (CanReg 5) in the country. The current approach consists of trained registrars based in the registry who conduct active data abstraction at the departments and units of the hospital and pathologic services. To ensure good governance, an administrative structure was created, including an advisory board, a technical committee, and registry staff. External support for the establishment of the Accra Cancer Registry has come mainly from Stanford University and the African Cancer Registry Network, in collaboration with the University of Ghana. Unlike previous attempts, this registry has a well-defined population made up of nine municipal districts. CONCLUSION The Accra Cancer Registry was established as a result of the lessons learned from failed previous attempts and aim to provide a model for setting up other cancer registries in Ghana. It will eventually be the focal point where all the national data can be collated.

Mixed invasive ductal-lobular carcinoma: Clinicopathological characterization and clinical outcomes.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e12531-e12531
Author(s):  
Azadeh Nasrazadani ◽  
Yujia Li ◽  
George Tseng ◽  
Jennifer Xavier ◽  
Sarah Hugar ◽  
...  
Keyword(s):  
Cancer Registry ◽  
Ductal Carcinoma ◽  
Lobular Carcinoma ◽  
Disease Free Survival ◽  
Clinical Information ◽  
Cancer Registries ◽  
Limited Information ◽  
Pathology Reports ◽  
Definition Of ◽  
The Individual

e12531 Background: Mixed Invasive Ductal-Lobular Carcinoma (IDC-L) is a histological subtype of invasive breast carcinoma comprised of both ductal and lobular morphologies. There is limited information on the relative proportions of the individual components in IDC-L and on outcomes compared to invasive lobular carcinoma (ILC) and invasive ductal carcinoma (IDC). Methods: Clinical information was abstracted from 16,308 patients with invasive breast cancer seen at UPMC Magee Women’s Hospital from 1990-2017 using the UPMC Network Cancer Registry. A systematic chart review was performed on a subset of patients annotated with IDC-L (n=806); however, a thorough review of pathology reports led to the exclusion of all but 408 patients for further analysis, due to the lack of a standardized definition of IDC-L. Of the 408 cases, 92% were estrogen receptor (ER)+. Survival of patients with ER+ IDC-L (n=376) was compared to ER+ IDC (n=9,716) and ER+ ILC (1,465). For a subset of IDC-L cases (n=54), distributions of individual subtype components were abstracted from pathology reports. Results: IDC-L made up 2.5% of the total cases (408/16,308). IDC-L tumors were on average 31% ductal and 69% lobular (p =0.001). Survival analysis showed worse disease free survival (DFS) (p=0.05) and overall survival (OS) (p=0.002) in patients with ER+ ILC compared to ER+ IDC, with ER+ IDC-L patients showing a median OS superior to ILC yet inferior to IDC counterparts (ns). Conclusions: Identification of patients with IDC-L through cancer registry protocols representative of standard practices by national cancer registries revealed a lack of a standardized definition of mixed IDC-L. Reliance on accuracy of these diagnoses calls in to question the reliability of prior clinico-pathologic analyses reported on this topic. DFS and OS of IDC-L patients falls between that of IDC and ILC patients while ILC patients showed significantly worse outcome. The predominant distribution of lobular morphology in IDC-L tumors suggests this subtype may have additional characteristics similar to lobular rather than ductal carcinomas. Comprehensive clinical and molecular characterization of a carefully identified IDC-L cohort is underway.

scholarly journals The National Cancer Registry of Cuba. Process and Result

2001 ◽  
Vol 47 (2) ◽  
pp. 171-177
Author(s):  
Armando Rodríguez ◽  
Antonio Martín García
Keyword(s):  
Information System ◽  
Cancer Registry ◽  
Cancer Control ◽  
Control Program ◽  
Cancer Registries ◽  
Cervix Uteri ◽  
National Cancer Registry ◽  
Organization Process ◽  
Cancer Control Program

Cancer represents a health problem in Cuba, being the second cause of death in our country. The National Cancer Registry went created in 1964 as an instrument for the epidemiological study of this disease. In 1986, important changes were introduced in the National Cancer Registry regarding organization, process and validation of the information with the implementation of a new automation information system; in 1990 a PC version of the system was developed, and in 1992 the decentralization of the process of the information to all provinces of the country (fourteen provincial cancer registries) was accomplished. The data obtained through the registry shows as main sites of incidence: lung, skin and colon for both sexes; prostate and larynx for men, and breast and cervix uteri for women. As for mortality, lung and colon for both sexes, prostate for men and breast for women are the main sites. The improvement of the quality of the information of the registry has permitted the use of the data for carrying out investigations that help to plan and assess the National Cancer Control Program.

THE EXPERIENCE OF THE ENTRY OF THE CHELYABINSK POPULATION-BASED CANCER REGISTRY INTO THE IARC INTERNATIONAL ASSOCIATION OF CANCER REGISTRIES

2017 ◽  
Vol 63 (4) ◽  
pp. 568-571
Author(s):  
Irina Aksenova ◽  
Alla Domozhirova ◽  
Andrey Vazhenin ◽  
Tatyana Novikova
Keyword(s):  
Cancer Registry ◽  
International Association ◽  
Cancer Control ◽  
Cancer Registries ◽  
Population Based ◽  
Registration System ◽  
Control Programs ◽  
Cancer Registry Data ◽  
Registry System ◽  
Epidemiological Pattern

The registration system of cancer cases has been established and perfected over the last half a century across the world. A unified approach to the registration of cancer cases and provision of high quality cancer registry data are the key to reliable epidemiological indicators in oncology as the essential basis for development of cancer control programs. Any deviations in the approach to registration of cancer cases can distort the epidemiological pattern and lead to incorrect prioritization and misallocation of resources. The Russian Federation has experienced a number of problems in the cancer registry system that requires thoughtful organizational solutions. Possible improvements are here addressed on the background of the application of Chelyabinsk Population-based Cancer Registry for inclusion in Cancer in Five Continents and other IARC publications.

scholarly journals Using Hospital-Based Cancer Registry Data to Inform Establishment of Population-Based Cancer Registries in Western Kenya

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 215s-215s
Author(s):  
G.C. Chesumbai ◽  
A.C. Koskei ◽  
N.G. Buziba ◽  
F.A. Chite
Keyword(s):  
Cancer Patients ◽  
Cancer Registry ◽  
Cultural Beliefs ◽  
Cancer Control ◽  
Cancer Registries ◽  
Population Based ◽  
Referral Hospital ◽  
Catchment Population ◽  
Cancer Data ◽  
Cancer Registry Data

Background: Eldoret Cancer Registry (ECR) is both a population-based cancer registry (PBCR) and hospital-based cancer registry (HBCR) located in Uasin Gishu County, western region of Kenya. As HBCR, it collects data on cancer cases seen at the Moi Teaching and Referral Hospital (M.T.R.H.), which is the second largest public referral hospital in Kenya and has a robust cancer diagnosis, treatment facilities and medical specialists. The catchment population of MTRH is estimated at 24 million. Aim: The aim of this study is to determine the number of cancer patients seen at MTRH by county and determine which counties will benefit most from establishment of a PBCR, based on their high incidence. Methods: Case finding is an active process. The E.C.R seeks clearance to collect data from the various data sources within MTRH. Trained cancer registrars visit the units on a regular basis to abstract and update cancer data into CanReg5. Quality checks and analysis of data are mainly done using CanReg5. Results: 16 years of HBCR data were analyzed. Out 20,423 cancer cases, Uasin Gishu county registered 39%. Nandi, Bungoma, Kakamega and Trans-Nzoia counties each registered 8%, 7%, 6% and 6% respectively. E-Marakwet and Busia both had 4% while other counties had below 2% of cancers cases registered for the period of analysis. Conclusion: Notably, there were high numbers of cancer patients registered from counties bordering Uasin Gishu. There is a high likelihood that there are more cases in these areas for patients who did not make it to MTRH due to preference, distance, SES, traditional/cultural beliefs etc. Establishing PBCRs will ensure a more comprehensive capture and reporting of cancer incidence and therefore necessitate proper planning for cancer control programs in those areas to reduce cancer burden and improve services for cancer patients and their families.

scholarly journals Feasibility and Results of Cancer Registry and Noncommunicable Disease Cohort Data Linkages in India

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 65s-65s
Author(s):  
T. Gillespie ◽  
P. Dhillon ◽  
K. Ward ◽  
A. Aggarwal ◽  
D. Bumb ◽  
...  
Keyword(s):  
Cancer Registry ◽  
Record Linkage ◽  
Cancer Control ◽  
Cancer Registries ◽  
Control Measures ◽  
Noncommunicable Disease ◽  
Multiple Sources ◽  
Probabilistic Record Linkage ◽  
Shared Risk ◽  
Data Linkages

Background: Cancer registries worldwide are vital to determine cancer burden, plan cancer control measures, and facilitate research. Population-based cancer registries are a priority for LMICs by the UICC; the National Cancer Registry Program (NCRP) of India oversees 28 such registries. A primary function of registries is to combine data for the same individual from multiple sources. For other disease cohorts where cancer is an outcome of interest, registries can potentially connect information by linking datasets together. Barriers to successful registration and linkages include systems in which cancer is not a notifiable disease, no universal unique individual identifier exists, and lack of trained personnel. This study utilizes technology and infrastructure to develop better linkages, surveillance, and outcomes. Aim: To assess the feasibility of linking large cohorts designed for cardio-metabolic disease research with cancer registries in New Delhi and Chennai; determine additional steps required for linkage accuracy and completeness; and develop detailed protocols for future applications. Methods: A pilot protocol for linkage between a large diabetes cohort and cancer registries in Delhi and Chennai was developed using MatchPro, a probabilistic record linkage program developed for cancer registries. Probabilistic software links datasets together in the presence of uncertainty (eg misspelled or abbreviated names) to identify record pairs with high probability of representing the same individual. For this study, algorithms were developed to address unique aspects of names and demographics in India. The software and algorithms focused on: detecting duplicates in cancer registries; and linking registries with external files from diabetes cohorts. In Delhi, 3 1-year datasets covering 3 years (2010, 2011, 2012) were linked with the diabetes cohort; in Chennai, the linkage included 3 5-year datasets covering 15 years (2000-04, '05-'09, '10-'14). The unique ID (Aadhaar) is not collected or linked systematically between different systems at this point in time. Results: Linkage attempts yielded potential matches ranked according to probabilistic scores; highest scores were reviewed to determine true matches. In Chennai, this process yielded: (2010-2014) 21% self-reported (SR) cases matching perfectly, 36% requiring follow-up, 13 nonreported (NR) cases found; 2005-2009: 33% SR cases matched perfectly, 1 NR case found; 2000-2004: 1 NR case. Also, 2 training workshops on data linkages and software were held. Conclusion: Linkages between cancer registries and other data sources are feasible in LMICs using probabilistic record linkage software augmented by manual matching. Future efforts to use existing epidemiologic resources (cohorts) and cancer research infrastructure (registries and clinical centers) can enhance research including understanding shared risk factors and pathophysiologic mechanisms e.g., between cancer and other NCD.

scholarly journals Cancer Registry and Its Different Aspects

2012 ◽  
Vol 1 (2) ◽  
pp. 76-80
Author(s):  
AMM Shariful Alam
Keyword(s):  
Information System ◽  
Cancer Registry ◽  
Health Information System ◽  
Cancer Control ◽  
Cancer Registries ◽  
Population Based ◽  
Cancer Registration ◽  
Registry System ◽  
Control Programmes ◽  
Health Planner

At both the national and community level, cancer registration schemes are central to research into the nature and causation of cancer, to the planning of health service resources and cancer control programmes, and to the assessment of their efficacy. Cancer registration is thus a part of the modern health information system. There are two major types of cancer registries -hospital-based registries and population-based registries. It is of paramount importance that the issue of development of cancer registry in developing countries should be taken into account. Although, the cancer registry system in Bangladesh is in infantile stage, it should be the aim of the health planner of our country to develop population-based cancer registry as early as possible. The extra difficulties and expenses involved are certainly outweighed by the enhanced validity and usefulness of the data generated. DOI: http://dx.doi.org/10.3329/jemc.v1i2.11467 J Enam Med Col 2011; 1(2): 76-80

scholarly journals Contrast Between Incidence of Childhood and Adolescent Cancers: Using a Population Based Cancer Registry, Kyadondo County, Uganda: 2009 to 2014

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 7s-7s
Author(s):  
D.B. Abila
Keyword(s):  
Children And Adolescents ◽  
Cancer Registry ◽  
Cancer Control ◽  
Cancer Registries ◽  
Incidence Rates ◽  
Population Census ◽  
Cross Sectional ◽  
Children And Adolescent ◽  
Study Results ◽  
Lower Frequencies

Background: Cancer is relatively rare in childhood compared with later in life. In high-income countries, hematologic malignancies are the most common, then brain tumors and solid tumors. World age-standardized incidence rates in Ireland averaged 142 cases per million children per year, higher than European average and lower than US average. In Africa, distribution of childhood cancers is quite similar, commonest being Kaposi sarcoma (KS), Burkitt's lymphoma, retinoblastoma, leukemia and Hodgkin lymphomas (HL). Among adolescent in Zimbabwe, leukemia has highest incidence rates then osteosarcoma, non-Hodgkin lymphoma (NHL) and KS. Aim: To describe the incidence of cancer among children and adolescents in Kyadondo County, Uganda from 2009 to 2014 which is necessary for planning of cancer control programs. Methods: Descriptive cross-sectional study which involved review of data from Kampala Cancer Registry that gathers information on cancers diagnosed within Kyadondo County (formed by Kampala and Wakiso districts) and analyzed using STATA 13. From 2014 Uganda population census, Kyadondo County had a population of 3,523,910 (32.2% children and 10% adolescents). Study population was children (0-14 years) and adolescents (15-19 years) diagnosed with cancer from January 2009 to December 2014. Results: The spectrum of cancers in adolescents reflects a transition. Carcinomas which are so prevalent in adults occur but at lower frequencies in adolescents. Study results are comparable to others studies indicating that nephroblastoma and retinoblastoma were common among children and not adolescents. Leukaemia and lymphomas cut across both children and adolescents. Conclusion: The spectrum of cancers in adolescents reflects a transition. Carcinomas which are so prevalent in adults occur but at lower frequencies in adolescents. Study results indicate that nephroblastoma and retinoblastoma were common among children and not adolescents. New prospective studies should be done on children and adolescent cancers covering a wide population size. Leukaemia and lymphomas cut across both children and adolescents. National cancer registries should be set up.

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