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.

Record Linkage in the Cancer Registry of Tyrol, Austria

2005 ◽  
Vol 44 (05) ◽  
pp. 626-630 ◽  
Author(s):  
W. Stühlinger ◽  
W. Oberaigner
Keyword(s):  
Cancer Registry ◽  
Record Linkage ◽  
Cancer Registries ◽  
Patient Data ◽  
Medical System ◽  
Data Sources ◽  
Patient Registration ◽  
Probabilistic Record Linkage ◽  
Linkage Method ◽  
Sufficient Precision

Summary Objective: Record linkage of patient data originating from various data sources and record linkage for checking uniqueness of patient registration are common tasks for every cancer registry. In Austria, there is no unique person identifier in use in the medical system. Hence, it was necessary and the goal of this work to develop an efficient means of record linkage for use in cancer registries in Austria. Methods: We adapted the method of probabilistic record linkage to the situation of cancer registries in Austria. In addition to the customary components of this method, we also took into consideration typing errors commonly occurring in names and dates of birth. The method was implemented in a program written in DELPHITM with interfaces optimised for cancer registries. Results: Applying our record linkage method to 130,509 linkages results in 105,272 (80.7%) identical pairs. For these identical pairs, 88.9% of decisions were performed automatically and 11.1% semi-automatically. For results decided automatically, 6.9% did not have simultaneous identity of last name, first name and date of birth. For results decided semi-automatically, 48.4% did not have an identical last name, 25.6% did not have an identical date of birth and 83.1% did not have simultaneous identity of last name and date of birth and first name. Conclusions: The method implemented in our cancer registry solves all record linkage problems in Austria with sufficient precision.

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.

scholarly journals Privacy preserving-probabilistic record linkage to assess cancer outcomes in people living with HIV in South Africa

2021 ◽  
Author(s):  
Julia Bohlius ◽  
Lina Bartels ◽  
Frédérique Chammartin ◽  
Victor Olago ◽  
Adrian Spoerri ◽  
...  
Keyword(s):  
South Africa ◽  
Record Linkage ◽  
Cancer Control ◽  
Population Based ◽  
Privacy Preserving ◽  
People Living With Hiv ◽  
Patient Privacy ◽  
Cancer Outcomes ◽  
Probabilistic Record Linkage ◽  
Living With Hiv

Background: Privacy-preserving probabilistic record linkage (PPPRL) methods were developed and applied in high-income countries to link records within and between organizations under strict privacy protections. PPPRL has not yet been used in African settings.Methods: We used HIV-related laboratory records from National Health Laboratory Services (NHLS) in South Africa to construct a cohort of HIV-positive patients and link them to the National Cancer Registry (NCR) with PPPRL. The study was restricted to Gauteng province from 2004 to 2014. We used records with national IDs (gold standard) to determine precision, recall, and f-measure of the linkages. We included all patients with ≥ 2 HIV-related lab records measured in the cohort and assessed the number of cancers diagnosed in people living with HIV (PLWH).Results: We included 11,480,118 HIV-related laboratory records and 664,869 cancer records in the linkage. We included 1,173,908 persons in the HIV cohort; 66.6% were female and median age at first HIV-related lab test was 33.9 years (IQR 27.4-41.3). Of the patients in the cohort, 26,348 were diagnosed with at least one cancer and 8,329 of these cancers were diagnosed before or on the date of the patient’s first HIV-related record; 18,019 were diagnosed after their first HIV-related record. For all linkages, precision, recall, and f-measures were high.Conclusion: Our study showed it is feasible to use PPPRL in an African setting to link routinely collected health records from different data sources and create a longitudinal HIV cohort with cancer outcomes while strictly protecting patient privacy. This work served as the foundation to create a nationwide population-based cohort including all South African provinces which will be used to inform cancer control programs.

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.

scholarly journals Ensuring confidentiality and safety of cancer registry data in Kumasi, Ghana

2017 ◽  
Vol 9 (1) ◽  
Author(s):  
Dennis O. Laryea ◽  
Fred K. Awittor
Keyword(s):  
Data Management ◽  
Cancer Registry ◽  
Data Entry ◽  
Cancer Registries ◽  
Population Based ◽  
Control Measures ◽  
Registry Data ◽  
Data Sources ◽  
Strict Adherence ◽  
Confidentiality Agreement

ObjectiveTo discuss the implementation of confidentiality practices at theKumasi Cancer Registry.IntroductionCancer registration involves collecting information on patientswith cancer. Population-based cancer registries in particular areuseful in estimating the disease burden and to inform the institutionof prevention and control measures. Collecting personal informationon patients with cancer requires strict adherence to principles ofconfidentiality to ensure the safety of the collected data. Failure mayhave legal and medical implications. The Kumasi Cancer Registrywas established as a population-based cancer Registry in 2012. Theregistry collects data on cases of cancer occurring among residentsof the Kumasi Metropolitan area of Ghana. Issues bordering onconfidentiality were an integral part of the establishment of theregistry. We discuss the implementation of confidentiality plansduring the four years of existence of the Kumasi Cancer Registry.MethodsThe registry has a designed abstraction form which is used to collectdata. Data sources for the Registry are all major hospitals in Kumasiproviding cancer treatment services. Data sources also include privatepathology laboratories and the Births and Deaths Registry. Trainedresearch assistants collect data from the folders of patients. This isfollowed by coding and then entering into the Canreg 5 software.Coded and entered into the Canreg5 software for management andanalysis. After data entry, the forms are filed in order of registrynumbers as generated by the canreg5 software for easy reference.ResultsConfidentiality of KsCR data is ensured through the followingmeasures. The signing of a confidentiality agreement by all registrystaff. The confidentiality agreement spells out terms for the releaseof data to third parties in particular but even staff of the variousfacilities. The agreement also spells out the consequences of a breachof any of the clauses. No direct contact is made with patients duringthe process of abstraction of data by registrars. The data abstractionforms are kept in a secured safe in the registry office. The computersthat house the registry data are password enabled and are changedon a regular basis to ensure security. The Canreg5 software usedfor electronic data management also has individual profiles withpasswords for all registrars and supervisors. The scope of accessto Canreg data is limited by the profile status of the respectivestaff members. Supervisors have full access to all data includingsummarized reports. Registrars have limited access mostly restrictedto data entry. Access to the registry office is restricted to registry staffand other personnel authorized by the Registry Manager or Director.An established Registry Advisory Board is responsible for assessingrequests and approval of data from the registry. Where files have tobe sent electronically, they are password protected and sent in severalparts in separate emails.ConclusionsDespite the potential challenges to maintaining confidentialityof data in developing outcries, evidence from four years of cancerdata management in Kumasi suggests stringent measure can ensureconfidentiality. The use of multiple measures to ensure confidentialityis essential in surveillance data management

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 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 Secure Linking of Data from Population-Based Cancer Registries with Healthcare Data to Evaluate Screening Programs

2019 ◽  
Vol 82 (S 02) ◽  
pp. S131-S138
Author(s):  
Sebastian Bartholomäus ◽  
Yannik Siegert ◽  
Hans Werner Hense ◽  
Oliver Heidinger
Keyword(s):  
Healthcare System ◽  
Data Protection ◽  
Record Linkage ◽  
Cancer Registries ◽  
Population Based ◽  
Plain Text ◽  
Screening Programs ◽  
Probabilistic Record Linkage ◽  
The Impact ◽  
German Data

Abstract Background The evaluation of population-based screening programs, like the German Mammography Screening Program (MSP), requires collection and linking data from population-based cancer registries and other sources of the healthcare system on a case- specific level. To link such sensitive data, we developed a method that is compliant with German data protection regulations and does not require written individual consent. Methods Our method combines a probabilistic record linkage on encrypted identifying data with ‘blinded anonymisation’. It ensures that all data either are encrypted or have a defined and measurable degree of anonymity. The data sources use a software to transform plain-text identifying data into a set of irreversibly encrypted person cryptograms, while the evaluation attributes are aggregated in multiple stages and are reversibly encrypted. A pseudonymisation service encrypts the person cryptograms into record assignment numbers and a downstream data-collecting centre uses them to perform the probabilistic record linkage. The blinded anonymisation solves the problem of quasi-identifiers within the evaluation data. It allows selecting a specific set of the encrypted aggregations to produce data export with ensured k-anonymity, without any plain-text information. These data are finally transferred to an evaluation centre where they are decrypted and analysed. Our approach allows creating several such generalisations, with different resulting suppression rates allowing dynamic balance information depth with privacy protection and also highlights how this affects data analysability. Results German data protection authorities approved our concept for the evaluation of the impact of the German MSP on breast cancer mortality. We implemented a prototype and tested it with 1.5 million simulated records, containing realistically distributed identifying data, calculated different generalisations and the respective suppression rates. Here, we also discuss limitations for large data sets in the cancer registry domain, as well as approaches for further improvements like l-diversity and how to reduce the amount of manual post-processing. Conclusion Our approach enables secure linking of data from population-based cancer registries and other sources of the healthcare system. Despite some limitations, it enables evaluation of the German MSP program and can be generalised to be applicable to other projects.

Sign in / Sign up

Export Citation Format

Share Document