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Registry and Registrar Associations


Associations of Registries and Registrars (11 links)


Related Publications

Trama A, Marcos-Gragera R, Sánchez Pérez MJ, et al.
Data quality in rare cancers registration: the report of the RARECARE data quality study.
Tumori. 2017; 103(1):22-32 [PubMed] Related Publications
PURPOSE: Rare cancers represent 22% of all tumors in Europe; however, the quality of the data of rare cancers may not be as good as the quality of data for common cancer. The project surveillance of rare cancers in Europe (RARECARE) had, among others, the objective of assessing rare cancer data quality in population-based cancer registries (CRs). Eight rare cancers were considered: mesothelioma, liver angiosarcoma, sarcomas, tumors of oral cavity, CNS tumors, germ cell tumors, leukemia, and malignant digestive endocrine tumors.
METHODS: We selected data on 18,000 diagnoses and revised, on the basis of the pathologic and clinical reports (but not on pathologic specimens), unspecified morphology and topography codes originally attributed by CR officers and checked the quality of follow-up of long-term survivors of poor prognosis cancers.
RESULTS: A total of 38 CRs contributed from 13 European countries. The majority of unspecified morphology and topography cases were confirmed as unspecified. The few unspecified cases that, after the review, changed to a more specific diagnosis increased the incidence of the common cancer histotypes. For example, 11% of the oral cavity epithelial cancers were reclassified from unspecified to more specific diagnoses: 8% were reclassified as squamous cell carcinoma (commoner) and only 1% as adenocarcinoma (rarer). The revision confirmed the majority of long-term survivors revealing a relative high proportion of mesothelioma long-term survivors. The majority of appendix carcinoids changed behavior from malignant to borderline lesions.
CONCLUSIONS: Our study suggests that the problem of poorly specified morphology and topography cases is mainly one of difficulty in reaching a precise diagnosis. The awareness of the importance of data quality for rare cancers should increase among registrars, pathologists, and clinicians.

Jeffree SM, Mihat O, Lukman KA, et al.
Surveillance Evaluation of the National Cancer Registry in Sabah, Malaysia.
Asian Pac J Cancer Prev. 2016; 17(7):3123-9 [PubMed] Related Publications
BACKGROUND: Cancer is the fourth leading cause of death in Sabah Malaysia with a reported agestandardized incidence rate was 104.9 per 100,000 in 2007. The incidence rate depends on nonmandatory notification in the registry. Underreporting will provide the false picture of cancer control program effectiveness. The present study was to evaluate the performance of the cancer registry system in terms of representativeness, data quality, simplicity, acceptability and timeliness and provision of recommendations for improvement.
MATERIALS AND METHODS: The evaluation was conducted among key informants in the National Cancer Registry (NCR) and reporting facilities from FebMay 2012 and was based on US CDC guidelines. Representativeness was assessed by matching cancer case in the Health Information System (HIS) and state pathology records with those in NCR. Data quality was measured through case finding and reabstracting of medical records by independent auditors. The reabstracting portion comprised 15 data items. Selfadministered questionnaires were used to assess simplicity and acceptability. Timeliness was measured from date of diagnosis to date of notification received and data dissemination.
RESULTS: Of 4613 cancer cases reported in HIS, 83.3% were matched with cancer registry. In the state pathology centre, 99.8% was notified to registry. Duplication of notification was 3%. Data completeness calculated for 104 samples was 63.4%. Registrars perceived simplicity in coding diagnosis as moderate. Notification process was moderately acceptable. Median duration of interval 1 was 5.7 months.
CONCLUSIONS: The performances of registry's attributes are fairly positive in terms of simplicity, case reporting sensitivity, and predictive value positive. It is moderately acceptable, data completeness and inflexible. The usefulness of registry is the area of concern to achieve registry objectives. Timeliness of reporting is within international standard, whereas timeliness to data dissemination was longer up to 4 years. Integration between existing HIS and national registration department will improve data quality.

Peterson J
Encouraging Health Information Management Graduates to Pursue Cancer Registry Careers.
J Registry Manag. 2016; 43(1):37-41 [PubMed] Related Publications
The cancer registry profession has grown dramatically since its inception in 1926. Certified tumor registrars (CTRs) have become an integral part of the cancer care team by providing quality cancer data for research, statistical purposes, public health, and cancer control. In addition, CTRs have been found to be valuable in other cancer and health-related fields. Based on the need for high-quality, accurate data, the National Cancer Registrars Association (NCRA), the certification body for CTRs, has increased the educational requirement for eligibility for the CTR certification exam. This has resulted in fewer individuals who are able to meet the requirements for CTR certification. In addition, the existing cancer registry workforce is, on average, older than other allied health professions, and therefore will face an increasing number of retirements in the next few years. The high demand for CTRs, the decreased pool of CTR-eligible applicants, and the aging cancer registry workforce has resulted in an existing shortage that will only get worse as the population ages and the incidence of cancer increases. Health information management (HIM) students are well suited to pursuing further training in the cancer registry field and gaining the CTR credential. HIM students or new graduates have the needed skill set and education to pursue a cancer registry career. There are many avenues HIM educational programs can take to encourage students to pursue CTR certification and a cancer registry career. Including cancer registry functions in courses throughout the HIM curriculum, bringing in cancer registry speakers, encouraging networking, and promoting the cancer registry field and profession in general are just a few of the methods that HIM programs can use to raise awareness of and promote a cancer registry career to their students. Illinois State University has used these methods and has found them to be successful in encouraging a percentage of their graduates to pursue cancer registry careers.

Foote M
How the Wisconsin Cancer Reporting System's Data Quality Task Force Started a Cancer Information Management Education Program to Improve Certified Tumor Registrar Recruitment in Wisconsin.
J Registry Manag. 2015; 42(2):70-2 [PubMed] Related Publications
The role of the cancer registrar is essential in the effort to gather essential information on most types of cancer diagnosed or treated within a health care institution or within a defined population. These data are used to inform a variety of public health decisions and provide information for cancer diagnosis, treatment, and prevention programs. Effective January 1, 2015, all abstraction of medical records for cancer cases at Commission on Cancer (CoC)-accredited facilities must be performed by cancer registrars who have achieved the Certified Tumor Registrar (CTR) credential. There is a national shortage of CTRs; the National Cancer Registrars Association (NCRA) registration directory, accessed in January 2013, listed just 70 CTRs for Wisconsin. Based on the average annual number of over 29,000 invasive, consolidated cancer cases in Wisconsin (diagnosed in 2006-2010), the average number of cases per CTR was 415, while the US average was 328 cases per CTR. Using this workload estimate, in comparison with other states, Wisconsin was burdened with the sixth highest caseload per CTR in the United States and the highest in the Midwest. Further, there were only 6 Wisconsin candidates for the NCRA CTR-certification exam in 2013.

Lin J, Butts E, Rockswold PD, et al.
Renal Cancer Patients with Unknown Ethnicity in Cancer Registry Data: Comparisons to Patients with Known Ethnicity.
J Registry Manag. 2015; 42(2):62-9 [PubMed] Related Publications
BACKGROUND: Information on ethnicity is important for health disparity research and health service planning. However, information on ethnicity is often incomplete in large routine databases such as cancer registries. This study aimed to compare survival status and other characteristics between cancer patients with and without information on Hispanic ethnicity in cancer registry data.
METHODS: The study included 2,426 patients with clear cell renal cell carcinoma (RCC) diagnosed between 1988 and 2004 and identified from the US Department of Defense (DoD)'s Automated Central Tumor Registry (ACTUR) database. There were 1,353 non-Hispanic patients, 134 Hispanic patients, and 939 patients with unknown ethnicity. Patients were followed through death, date of last contact, or censored on December 31, 2007.
RESULTS: Patients with unknown ethnicity exhibited significantly shorter survival than non-Hispanic or Hispanic patients (Log Rank P < .0001). Further analysis showed that compared to patients with known ethnicity, patients with unknown ethnicity were more likely to have advanced tumor stage at diagnosis and more likely to have missing information on tumor grade, size, and some demographic characteristics. After adjustment for demographic, tumor and treatment variables, patients with unknown ethnicity still exhibited significantly higher mortality than non-Hispanic patients (hazard ratio [HR], 1.69; 95% CI, 1.48-1.92), while Hispanic patients were not different from non-Hispanic patients (HR, 0.95; 95% CI, 0.71-1.28). The shorter survival in the unknown ethnicity group was consistently observed in subgroups by age, race, stage, grade, and surgical treatment, suggesting factors other than those investigated in the current study may play a role in the survival differences between patients with and without information on Hispanic ethnicity.
IMPLICATIONS: The poor survival of patients with unknown ethnicity in ACTUR warrants further research to elucidate missing mechanisms. Improvement in collection of data by reaching out for more engagement of patients, clinicians and registrars and increasing patient-provider interactions is needed.

Warner JL, Levy MA, Neuss MN, et al.
ReCAP: Feasibility and Accuracy of Extracting Cancer Stage Information From Narrative Electronic Health Record Data.
J Oncol Pract. 2016; 12(2):157-8; e169-7 [PubMed] Related Publications
PURPOSE: Cancer stage, one of the most important prognostic factors for cancer-specific survival, is often documented in narrative form in electronic health records (EHRs). Such documentation results in tedious and time-consuming abstraction efforts by tumor registrars and other secondary users. This information may be amenable to extraction by automated methods.
METHODS: We developed a natural language processing algorithm to extract stage statements from machine-readable EHR documents, including automated rules to choose the most likely stage when discordance was present in the EHR. These methods were developed in a training set of patients with lung cancer, independently validated in a test set of patients with lung cancer, and compared with the gold standard of Vanderbilt Cancer Registry–determined stage (when available).
RESULTS: In the combined data set of 2,323 patients (training set, n = 1,103; validation set, n = 1,220), 751,880 documents were analyzed. A stage statement was extracted from 2,239 (98.6%) patient EHRs (median, 24 documents per patient). Stage discordance was common, affecting 83.6% of these EHRs. Nevertheless, algorithmically derived stage accuracy was high in the validation set (κ = 0.906; 95% CI, 0.873 to 0.939), when including notes generated within 14 weeks from diagnosis.
CONCLUSION: Accurate stage determination can be achieved through automated methods applied to narrative text, despite the frequent presence of discordance in such data. Our results also indicate that stage can be automatically captured in a shorter timeframe than the 6-month window used by cancer registries, as early as 5 weeks from diagnosis. These methods may be generalizable to large narrative cancer data sets.

Baili P, Torresani M, Agresti R, et al.
A breast cancer clinical registry in an Italian comprehensive cancer center: an instrument for descriptive, clinical, and experimental research.
Tumori. 2015 Jul-Aug; 101(4):440-6 [PubMed] Related Publications
In clinical research, many potentially useful variables are available via the routine activity of cancer center-based clinical registries (CCCR). We present the experience of the breast cancer clinical registry at Fondazione IRCCS "Istituto Nazionale dei Tumori" to give an example of how a CCCR can be planned, implemented, and used. Five criteria were taken into consideration while planning our CCCR: (a) available clinical and administrative databases ought to be exploited to the maximum extent; (b) open source software should be used; (c) a Web-based interface must be designed; (d) CCCR data must be compatible with population-based cancer registry data; (e) CCCR must be an open system, able to be connected with other data repositories. The amount of work needed for the implementation of a CCCR is inversely linked with the amount of available coded data: the fewer data are available in the input databases as coded variables, the more work will be necessary, for information technology staff, text mining analysis, and registrars (for collecting data from clinical records). A cancer registry in a comprehensive cancer center can be used for several research aspects, such as estimate of the number of cases needed for clinical studies, assessment of biobank specimens with specific characteristics, evaluation of clinical practice and adhesion to clinical guidelines, comparative studies between clinical and population sets of patients, studies on cancer prognosis, and studies on cancer survivorship.

In H, Simon CA, Phillips JL, et al.
The quest for population-level cancer recurrence data; current deficiencies and targets for improvement.
J Surg Oncol. 2015; 111(6):657-62 [PubMed] Related Publications
BACKGROUND: Cancer recurrence is a critical outcome in cancer care. However, population-level recurrence information is currently unavailable. Tumor registries provide an opportunity to generate this information, but require major reform. Our objectives were to (1) determine causes for variability in collection of recurrence, and (2) identify targets for intervention.
METHODS: On-site interviews and observations of tumor registry follow-up procedures were conducted at Commission on Cancer (CoC) accredited hospitals. Information regarding registry resources (caseload, staffing, chart availability), follow-up methods and perceived causes for difficulty in obtaining recurrence information was obtained.
RESULTS: Seven NCI/academic, 5 comprehensive community and 2 community centers agreed to participate. Hospitals were inconsistent in their investigation of cancer recurrence, resulting in underreporting of rates of recurrence. Hospital characteristics, registry staffing, staff qualifications and medical chart access influenced follow-up practices. Coding standards and definitions for recurrence were suboptimal, resulting in hospital variability of recurrence reporting. Finally, inability to identify cases lost to follow-up in collected data prevents accurate analysis of recurrence rates.
CONCLUSION: Tumor registries collect varying degrees of recurrence information and provide the underpinnings to capture population-level cancer recurrence data. Targets for intervention are listed, and provide a roadmap to obtain this critical information in cancer care.

Lim HS, Won YJ, Boo YK
Improving accuracy and completeness in the collaborative staging system for stomach cancer in South Korea.
Asian Pac J Cancer Prev. 2014; 15(21):9529-34 [PubMed] Related Publications
BACKGROUND: Cancer staging enables planning for the best treatments, evaluation of prognosis, and predictions for survival. The Collaborative Stage (CS) system makes it possible to significantly reduce the proportion of patients labeled at an "unknown" stage as well as discrepancies among different staging systems. This study aims to analyze the factors that influence the accuracy and validity of CS data.
MATERIALS AND METHODS: Data were randomly selected (233 cases) from stomach cancer cases enrolled for CS survey at the Korea Central Cancer Registry. Two questionnaires were used to assess CS values for each case and to review the cancer registration environment for each hospital. Data were analyzed in terms of the relationships between the time spent for acquisition and registration of CS information, environments relating to cancer registration in the hospitals, and document sources of CS information for each item.
RESULTS: The time for extracting and registering data was found to be shorter when the hospitals had prior experience gained from participating in a CS pilot study and when they were equipped with full-time cancer registrars. Evaluation of the CS information according to medical record sources found that the percentage of items missing for Site Specific Factor (SSF) was 30% higher than for other CS variables. Errors in CS coding were found in variables such as "CS Extension," "CS Lymph Nodes," "CS Metastasis at Diagnosis," and "SSF25 Involvement of Cardia and Distance from Esophagogastric Junction (EGJ)."
CONCLUSIONS: To build CS system data that are reliable for cancer registration and clinical research, the following components are required: 1) training programs for medical records administrators; 2) supporting materials to promote active participation; and 3) format development to improve registration validity.

Boo YK, Lim HS, Won YJ
Implementation plans for the Korean certified tumor registrar qualification system.
Asian Pac J Cancer Prev. 2014; 15(21):9411-6 [PubMed] Related Publications
BACKGROUND: Cancer registration data is used to understand the nation's cancer burden, and to provide significant baseline data for cancer control efforts, as well as, research on cancer incidence, mortality, survival, and prevalence. A system that approves, assesses, and manages the qualification of specialists, responsible for performing cancer registration, has not been developed in Korea. This study presents ways to implement a certification system designed for the qualification of tumor registrars in Korea.
MATERIALS AND METHODS: Requirements for implementing a certified tumor registrar qualification system were determined by reviewing the system for establishing qualifications in Korea and the American qualification system via the National Cancer Registrars Association (NCRA). Moreover, a survey was conducted on Korean medical records administrators, who had taken the U.S. Certified Tumor Registrar (CTR) examination, in order to review their opinions regarding these requirements.
RESULTS: This study verified the feasibility of a qualification examination based on the opinions of CTR specialists by determining the following: items, and the associated ratings, of the qualifications necessary to register individuals as certified tumor registrars in a private qualification system; status of human resources required for the examination or training processes; plans regarding the organization needed for management, and operation of qualifications, examination standards, subject areas, examination methods, examination qualifications, or education and training programs.
CONCLUSIONS: The implementation of a certified tumor registrar qualification system will lead to enhanced job competency for specialists and a qualitative improvement of cancer registration data. It will also reliably foster human resources that will lay the groundwork needed to establish scientific and reasonable national cancer management policies.

White Gilbertson S, Gosnell H, Cope L
A primer on molecular biology for certified tumor registrars.
J Registry Manag. 2014; 41(1):38-41 [PubMed] Related Publications
Certified tumor registrars (CTRs) are expected to have expertise in cancer staging, treatment, and patient followup and an overall knowledge of the cancer disease process. As medicine becomes more personalized, the prognosis for individual cancer patients is beginning to include more molecular markers, and CTRs are being asked to record these results along with traditional anatomic information about the disease. Molecular markers, also called biomarkers, are measured using a variety of techniques, including fluorescent in situ hybridization (FISH), immunohistochemistry (IHC), enzyme-linked immunosorbent assay (ELISA), and reverse transcription polymerase chain reaction (RT-PCR). This primer will provide an overview of these techniques so that CTRs can more efficiently search medical records for information and more accurately record these data items into abstracting templates.

Collins E
Edits: an electronic tool for cancer registry data quality.
J Registry Manag. 2013; 40(3):133-7 [PubMed] Related Publications
Edits are a standardized tool for cancer registry data quality. The development of edits is overseen by the North American Association of Central Cancer Registries Edits Workgroup. Edit software tools are supported by the National Program of Cancer Registries. Collaborative Stage (CS) edits are available to support registrar coding of the CS data items. Edits enforce consistent coding across multiple related data items. Understanding where to look for information on edit logic and how to read the edit documents will enable registrars to correctly resolve data discrepancies identified by edit reports.

Webster PS, Fulton JP, Sampangi S
Conflicting race/ethnicity reports: lessons for improvement in data quality.
J Registry Manag. 2013; 40(3):122-6 [PubMed] Related Publications
OBJECTIVE: To learn the frequency of conflicting race/ethnicity reports, to examine patterns of conflicting reports, and to identify possible avenues for data quality improvement.
METHODS: As part of the Data Improvement Project on Patient Ethnicity and Race (DIPPER), an analysis of conflicting race/ethnicity reports for cancer cases was conducted. Using matched hospital discharge data and central cancer registry data from 2009, the race/ethnicity of patients in the 2 datasets were compared. Those with conflicting reports ("mismatched") were examined more closely. From a sample of 2,356 patients, 187 had conflicting reports for their race (7.9%) and 357 had conflicting reports for their ethnicity (15% was thus developed).
RESULTS: In the 2009 hospital discharge data, an unknown response occurred nearly twice as often for Hispanic ethnicity as for race. Almost 85% of the mismatched race cases were classified as non-white in the hospital discharge data and white in the central cancer registry data. The most common ethnicity mismatch was coded unknown by the hospital but non-Hispanic by the registry.
CONCLUSIONS: Hospital cancer registrars occasionally lack easy access to race and, more often, ethnicity data. More attention should be given to discrepancies (including allowing staff to flag and verify existing data), and staff training should improve both perceived and real data accuracy. In the future, hospitals and registries would be better served by pairing race and ethnicity together in the electronic medical record. This would ensure quick, easy access for cancer registrars. Perhaps standard setters should add ethnicity to the gold standard criteria for registries.

Korir A, Mauti N, Moats P, et al.
Developing clinical strength-of-evidence approach to define HIV-associated malignancies for cancer registration in Kenya.
PLoS One. 2014; 9(1):e85881 [PubMed] Free Access to Full Article Related Publications
BACKGROUND: Sub-Saharan Africa cancer registries are beset by an increasing cancer burden further exacerbated by the AIDS epidemic where there are limited capabilities for cancer-AIDS match co-registration. We undertook a pilot study based on a "strength-of-evidence" approach using clinical data that is abstracted at the time of cancer registration for purposes of linking cancer diagnosis to AIDS diagnosis.
METHODS/FINDINGS: The standard Nairobi Cancer Registry form was modified for registrars to abstract the following clinical data from medical records regarding HIV infection/AIDS in a hierarchal approach at time of cancer registration from highest-to-lowest strength-of-evidence: 1) documentation of positive HIV serology; 2) antiretroviral drug prescription; 3) CD4+ lymphocyte count; and 4) WHO HIV clinical stage or immune suppression syndrome (ISS), which is Kenyan terminology for AIDS. Between August 1 and October 31, 2011 a total of 1,200 cancer cases were registered. Of these, 171 cases (14.3%) met clinical strength-of-evidence criteria for association with HIV infection/AIDS; 69% (118 cases were tumor types with known HIV association - Kaposi's sarcoma, cervical cancer, non-Hodgkin's and Hodgkin's lymphoma, and conjunctiva carcinoma) and 31% (53) were consistent with non-AIDS defining cancers. Verifiable positive HIV serology was identified in 47 (27%) cases for an absolute seroprevalence rate of 4% among the cancer registered cases with an upper boundary of 14% among those meeting at least one of strength-of-evidence criteria.
CONCLUSIONS/SIGNIFICANCE: This pilot demonstration of a hierarchal, clinical strength-of-evidence approach for cancer-AIDS registration in Kenya establishes feasibility, is readily adaptable, pragmatic, and does not require additional resources for critically under staffed cancer registries. Cancer is an emerging public health challenge, and African nations need to develop well designed population-based studies in order to better define the impact and spectrum of malignant disease in the backdrop of HIV infection.

Schaffar R, Rapiti E, Rachet B, Woods L
Accuracy of cause of death data routinely recorded in a population-based cancer registry: impact on cause-specific survival and validation using the Geneva Cancer Registry.
BMC Cancer. 2013; 13:609 [PubMed] Free Access to Full Article Related Publications
BACKGROUND: Information on the underlying cause of death of cancer patients is of interest because it can be used to estimate net survival. The population-based Geneva Cancer Registry is unique because registrars are able to review the official cause of death. This study aims to describe the difference between the official and revised cause-of-death variables and the impact on cancer survival estimates.
METHODS: The recording process for each cause of death variable is summarised. We describe the differences between the two cause-of-death variables for the 5,065 deceased patients out of the 10,534 women diagnosed with breast cancer between 1970 and 2009. The Kappa statistic and logistic regression are applied to evaluate the degree of concordance. The impact of discordance on cause-specific survival is examined using the Kaplan Meier method.
RESULTS: The overall agreement between the two variables was high. However, several subgroups presented a lower concordance, suggesting differences in calendar time and less attention given to older patients and more advanced diseases. Similarly, the impact of discordance on cause-specific survival was small on overall survival but larger for several subgroups.
CONCLUSION: Estimation of cancer-specific survival could therefore be prone to bias when using the official cause of death. Breast cancer is not the more lethal cancer and our results can certainly not be generalised to more lethal tumours.

Zhang X, Kahn AR, Boscoe FP, Buckley PM
An automated algorithm for consolidating dates of diagnosis from multiple sources.
J Registry Manag. 2013; 40(1):36-9 [PubMed] Related Publications
BACKGROUND: Multiple dates of diagnosis are often received from different reporting sources at a central cancer registry. Resolving these inconsistencies can be a labor-intensive task. To our knowledge, no algorithms for the consolidation of diagnosis dates have been published. We present such an algorithm here.
METHODS: The algorithm uses a "take the best" heuristic approach, incorporating the reported dates of diagnosis, class of case, service type (a New York-specific item similar to type of reporting source), and the date of first contact. The algorithm was evaluated by comparing results to those obtained with manual review by experienced certified tumor registrars (CTRs).
RESULTS: From a sample of 209,907 tumors with multiple diagnosis dates reported to the New York State Cancer Registry (NYSCR), the algorithm determined a single date for 94.7 percent of these, with the balance designated for manual review. Of a sample of 636 tumors that were manually reviewed to evaluate the algorithm, the algorithm obtained the same year as the CTRs for 621 tumors (97.6 percent), the same month and year for 572 tumors (89.9 percent) and the same month, year, and day for 518 tumors (81.4 percent). There was much lower agreement between the manually derived dates and the originally consolidated dates.
CONCLUSION: The algorithm presented here is accurate, efficient, and reliable, and hopefully will help the cancer registry community move toward standard practices for record consolidation.

Webster PS, Fulton J, Rousseau D
The challenges of abstracting reliable information on patient race and ethnicity: initial observations from the Data Improvement Project on Patient Ethnicity and Race (DIPPER).
J Registry Manag. 2012; 39(2):76-80 [PubMed] Related Publications
The Hospital Association of Rhode Island, in conjunction with the Rhode Island Cancer Registry, received funding for a special project to improve the validity and reliability of race and ethnicity data in hospital inpatient records. One aspect of the project is to examine how hospital cancer registrars (CRs) locate, interpret, and code patient race and ethnicity. In the present report, we discuss initial findings on this topic, gleaned from discussions with registrars at 11 acute care hospitals. Several problems related to business practice, software, and training were identified. The following solutions are offered: raising the awareness of all hospital staff about the value of race and ethnicity data and the challenges of cancer registration, removing barriers to data recorded at the time of patient registration, modifying software and software routines, and providing additional regular training to patient registration staff about the collection of race and ethnicity data.

Menck HR
Comparison of the NCRA and NAACCR Strategic Management Plans.
J Registry Manag. 2012; 39(3):133-5 [PubMed] Related Publications
The Strategic Management Plans of the National Cancer Registrars Association (NCRA) and the North American Association of Central Cancer Registries (NAACCR) were compared, and differences noted. No uncovered subject areas were found.

Hsieh MC, Yu Q, Wu XC, et al.
Evaluating factors associated with unknown SEER Summary Stage 2000 derived from collaborative stage at central registry level.
J Registry Manag. 2012; 39(3):101-6 [PubMed] Related Publications
BACKGROUND: Cancer stage is critical for treatment planning and assessing disease prognosis. The percentage of unknown staged cancer cases varies considerably across state cancer registries; factors contributing to the variations in unknown stage have not been reported in the literature before. The purpose of this study was to examine whether these variations were influenced by demographic and/or clinical factors as well as the type of reporting facility.
METHODS: Invasive colorectal, lung, female breast, and prostate cancers diagnosed between 2004 and 2007 were obtained from the North American Association of Central Cancer Registries (NAACCR); 47 population-based cancer registries in the United States were included. The unknown stage was based on Summary Stage 2000 codes derived from Collaborative Stage Version 1 (CSv1). Relative importance analysis was used to identify variables that were essential in predicting unknown stage. Using state central registries as analytical units, multiple linear regression was used to evaluate factors associated with the percentage of unknown stage by cancer site; potential outlier registries with a high percentage of unknown stage cases were identified using boxplots and standardized residuals.
RESULTS: Overall, lung cancer had the highest percentage of unknown stage (8.3%) and prostate cancer had the largest variation of unknown stage among registries (0.6%-18.1%). The percentages of neoplasms not otherwise specified (NOS) histology, non-microscopic confirmation, and non-hospital reporting source were positively associated (p less than 0.05) with percentage of unknown stage for all studied cancer sites before adjustment. Variables that retained a positive association with unknown stage including all demographic and clinical variables, year of diagnosis, and type of reporting source were black race, metropolitan area less than 1 million population, histologies of neoplasms NOS or epithelial neoplasms NOS, diagnosis year 2005, and non-hospital reporting source for colorectal cancer; metropolitan area less than 1 million population, neoplasms NOS histology, and non-hospital reporting source for female breast; and diagnosis year 2005 and non-hospital reporting source for prostate. After adjustment, none of the predictors were significant for lung cancer. We observed 1 potential outlier registry each for colorectal, lung and female breast cancers.
CONCLUSIONS: Factors associated with unknown stage differ by cancer site; however, the type of reporting source is an important predictor of unknown stage for all cancers except lung after adjustment. Central registries with high percentage of unknown stage should be made aware of their data quality issue(s). As a result, these registries can investigate those factors and provide training to registrars to improve their cancer data quality.

Verhoeven RH, Aben KK, van Rossum MM, et al.
New insights into the aetiology of scrotal cancer, a nationwide case-control study in the Netherlands.
J Eur Acad Dermatol Venereol. 2014; 28(1):65-71 [PubMed] Related Publications
BACKGROUND: Although scrotal cancer is traditionally regarded as an occupational disease, there is increasing evidence that factors which are involved in cutaneous and genital carcinogenesis might play a role in the carcinogenesis of scrotal cancer.
OBJECTIVE: This exploratory study aimed to detect exposures that might have an aetiological relation with scrotal cancer.
METHODS: A nationwide population-based case-control study was conducted in the Netherlands. The patients were identified through the Netherlands cancer registry. Controls were recruited among acquaintances of the cancer registry registrars. The participants completed a questionnaire that included questions on occupational exposures, naked sunbathing, use of sunbeds, skin diseases and their treatments, treatments for cancer and sexually transmitted diseases. Age-adjusted odds-ratios (ORs) were calculated.
RESULTS: Forty-seven scrotal cancer patients and 125 controls completed the questionnaire. The patients were categorized according to histology of the scrotal tumours. Having had a skin disease (OR = 6.3, 95% CI = 1.8-22), especially psoriasis (OR = 8.7), increased the risk of squamous cell carcinomas (SCC) of the scrotum. A previous cancer diagnosis may affect the risk of scrotal basal cell carcinomas (BCC; OR = 4.9, 95% CI = 0.9-27.3). Furthermore, an association between the number of sexual partners and the occurrence of scrotal sarcoma was found.
CONCLUSION: Scrotal SCCs may be related with skin diseases or skin disease treatments. Having had cancer may be a risk factor for a BCC of the scrotum. Scrotal sarcomas seem to be correlated with the number of sexual partners. This study suggests that scrotal cancer has characteristics of both cutaneous and genital carcinogenesis.

Wei KR, Chen WQ, Zhang SW, et al.
Cancer registration in the Peoples Republic of China.
Asian Pac J Cancer Prev. 2012; 13(8):4209-14 [PubMed] Related Publications
The current situation of cancer registration in China was systematically reviewed. So far, cancer registration in China has been making a great progress in the following aspects: the number of cancer registries and covered population have increased dramatically; a registration network has been established and completed gradually; regulations and rules improved remarkably; more attention is being paid by every level of government; a lot of registration software has been created and financial support ensured. However, we are still facing some problems and challenges, such as no stable groups of registrars, shortage of training opportunities, poor data quality, insufficient utilization and lack of multidisciplinary mechanisms, so that the cancer registration system still needs to be enhanced and improved. Along with the development of economy, science and information technology, methods and patterns of cancer registration is changing. It is to be expected that cancer registration will be automatic, nationwide and integrated with community healthcare in the near future.

Wahidin M, Noviani R, Hermawan S, et al.
Population-based cancer registration in Indonesia.
Asian Pac J Cancer Prev. 2012; 13(4):1709-10 [PubMed] Related Publications
Cancer is a major public health problem in Indonesia, becoming the 7th largest cause of death based on a national survey in 2007, accounting for 5.7 of all mortality. A cancer registry was started in 1970, but it was partial and was stopped mainly because no government body was responsible. Realizing the above situation, the Indonesian government established the Sub Directorate of Cancer Control within the Ministry of Health, with responsibility for developing a national cancer control program, including a cancer registry. A sustainable cancer registry was then started in 2007 within Jakarta Province, first hospital-based but then expanded to be population-based. Steps of cancer registration in Jakarta are data collection, data verification, data validation, data management and analysis, and data publication. Data collection is conducted by health facilities (hospitals, laboratories, primary health centers) at the district/municipal level, with reports to the provincial level. Data are collected passively by holding meetings every three months in the district/municipality. Verification of data is the responsibility of the medical doctor or pathologist in each data source. Data validation is conducted by a team in the cancer registry, consisting of district/municipal/province health officers, pathologists, and registrars. Data management and analyses are conducted by a cancer registry team at the provincial level, assisted by the national team. We use software named Indonesian Cancer Registry System (SRIKANDI) which is adopted from CanReg4 IARC. Data from the population-based cancer registry in Jakarta Province showed the leading cancers among females in 2005-2007 to be breast cancer, cervical cancer, ovarian cancer, colorectal cancer and among males are bronchus and lung cancer, colorectal cancer, liver cancer, pharyngeal cancer, and prostate cancer. The leading childhood cancers are leukaemia and retinoblastoma.

Kim HM, Goodman M, Kim BI, Ward KC
Frequency and determinants of missing data in clinical and prognostic variables recently added to SEER.
J Registry Manag. 2011; 38(3):120-31 [PubMed] Related Publications
BACKGROUND: The objectives of the present study were to examine and quantify the frequency of missing information for the collaborative stage (CS) site-specific factors (SSF) added to the Surveillance, Epidemiology and End Results (SEER) data collection in 2004, to evaluate patient-, disease-, and registry-related factors associated with incomplete data, and to quantify time and effort required to collect information for each variable of interest.
METHODS: The study included 2 parts: 1) an analysis of existing nationwide SEER data; and 2) an evaluation of time and effort as reported by hospital registrars in the Metropolitan Atlanta and Rural Georgia (MARGA) SEER Registry catchment area. The first analysis examined all SSF for all types of cancers reported to the SEER Program between 2004 and 2007 from all 17 SEER registries. The data for the second analysis were limited to 5 cancer sites: breast, prostate, colon/rectum, testes, and lymphoma. Information for each cancer site was collected from 40 cancer registrars who were asked to estimate the amount of time and effort spent on abstracting each variable of interest.
RESULTS: We analyzed 825,952 cases pertaining to 18 different cancer sites and 45 different variables. Of the 45 SSF variables examined in this study, 12 had at least 50% of cases with missing data. Conversely, a total of 21 variables were at least 80% complete. Our analysis of determinants of missing SSF data showed an improvement of reporting since 2004 for most variables. Older patients (80+ years of age) tended to have a higher proportion of missing data compared to 40- to 59-year-olds (reference category). For the specific cancers presented in this paper, patients diagnosed in non-metropolitan areas tended to have a slightly higher proportion of missing data compared to those diagnosed in metropolitan areas. We found no discernable patterns of association between probability of having missing data and patients' race, sex, or registry. According to the registrars' reports, data collection for CS SSF requires a median of 2-3 minutes with a range of 1-15 minutes. There was great variability in the perceived level of difficulty associated with finding the necessarily data.
CONCLUSIONS: The data completeness for CS SSF ranges widely, and is largely site- and variable-specific. The main barrier to data completeness appears to be the availability of information in the medical records. Our results indicate that for a number of SSF the proportion of missing data is so high that these variables can be of little, if any, use for population-based research. The practical implications of our findings with respect to existing and future SSF need to be explored.

Chapman SA, Mulvihill L, Herrera C
Workload and time management in central cancer registries: baseline data and implication for registry staffing.
J Registry Manag. 2012; 39(4):178-84 [PubMed] Free Access to Full Article Related Publications
The Workload and Time Management Survey of Central Cancer Registries was conducted in 2011 to assess the amount of time spent on work activities usually performed by cancer registrars. A survey including 39 multi-item questions,together with a work activities data collection log, was sent by email to the central cancer registry (CCR) manager in each of the 50 states and the District of Columbia. Twenty-four central cancer registries (47%) responded to the survey.Results indicate that registries faced reductions in budgeted staffing from 2008-2009. The number of source records and total cases were important indicators of workload. Four core activities, including abstracting at the registry, visual editing,case consolidation, and resolving edit reports, accounted for about half of registry workload. We estimate an average of 12.4 full-time equivalents (FTEs) are required to perform all cancer registration activities tracked by the survey; however,estimates vary widely by registry size. These findings may be useful for registries as a benchmark for their own registry workload and time-management data and to develop staffing guidelines.

Chan LS, Scholes NJ, Jones M
Skin excisions: not so simple for the regionally based general surgical trainee.
Aust J Rural Health. 2011; 19(4):205-10 [PubMed] Related Publications
BACKGROUND: In the regional setting, general practitioners often refer complicated skin excisions to general surgery, whereas in larger centres this is the domain of plastic surgery. General surgical trainees often do not have adequate exposure to complex skin excisions prior to placement in regional centres.
OBJECTIVE: To explore what factors affected positive margin rates in surgical registrars in a regional setting.
DESIGN: Retrospective audit.
SETTING: Large teaching hospital (referral centre).
PARTICIPANTS: All skin lesions excised under local anaesthetic by registrars at a single referral centre over a 30-month period from 2007 to mid 2009, of these only basal cell carcinomas (BCC) and squamous cell carcinomas (SCC) were analysed.
RESULTS: Registrars excised a total of 703 skin lesions, 314 (43.4%) were BCC or SCC, and of these 50 (15.9%) had positive margins. Repeated measures multivariable logistic regression was performed on relevant data. Surgical registrars had significantly higher positive margin rates when operating unsupervised (P=0.014). Although not significant, there was a tendency for BCC excisions to have positive margins (P=0.059). There was no statistical difference when comparing lesions excised on the head compared to body, use of a graft/flap or registrar training level.
CONCLUSION: This study's positive margin rate of 15.9% falls within the range reported in the literature (0.7% to 20.7%); however, this has the potential to be further reduced. Surgical registrars excising skin lesions in regional centres, regardless of level of training, should have closer supervision. Regular surgical audit should be done so registrars can have early feedback on performance.

Webster P, Rousseau D, Maranda R
A report on Rhode Island's efforts to ameliorate the CTR shortage.
J Registry Manag. 2010; 37(3):104-6 [PubMed] Related Publications
There is a growing local and national shortfall of certified tumor registrars (CTRs). To address this concern in our state, the Rhode Island Cancer Registry (RICR) created an internship program with the hope of attracting new people to the cancer registry field. This article outlines the reasons why RICR believes the central registry is uniquely well-suited to training new personnel, given our unparalleled statewide perspective on the accuracy and completeness of reporting at every hospital and freestanding radiation center that reports to RICR. In addition, this paper examines recruitment, approaches to training, and reflections on the experience here in Rhode Island. In short, RICR piloted a central registry-based training program that could be worthwhile to replicate. This information may be useful to other states attempting to ease their workforce shortage.

Geller BM, Mace J, Vacek P, et al.
Are cancer survivors willing to participate in research?
J Community Health. 2011; 36(5):772-8 [PubMed] Related Publications
Little is known about the late and long term effects of having survived cancer and its treatments. A cancer survivor registry with a representative longitudinal cohort of survivors from all types of cancers would facilitate the study of these effects. A group of researchers, cancer survivors and cancer registrars used hospital cancer registries to identify cancer survivors diagnosed from 1990 through 2006. All eligible cancer survivors were invited to participate in a cancer survivor registry. We describe our methods for engaging the community, who responded to the invitation and who agreed to participate. We used Chi square tests with a significance level of .05 to assess associations with response and participation rates. We used logistic regression to examine associations with participation after adjustment for the effect of age. Logistic regression was also used to assess the independent effects of those variables that were significantly associated with participation after adjustment for age. Of the 6031 eligible survivors, 55% responded to the invitation. Of those who responded 61% agreed to participate in the cancer survivor registry for an overall participation rate of 33%. Rural residence, less education, full time employment, and lower income were independently related to not participating, but marital status was not associated with participation after adjustment for these variables. It is very difficult to recruit a representative sample of cancer survivors to participate in a cancer survivor registry. More research on how to engage the underserved population (rural residents, less education and lower income) is warranted.

Barzilay X
Maximizing the cancer registry role and data utilization.
J Registry Manag. 2011; 38(4):206-8 [PubMed] Related Publications
OBJECTIVE: The cancer registry is traditionally placed within the department of medical records, which is known today as the department of health information management (HIM). This arrangement provides cancer registrars easy access to medical records where large portions of cancer data are collected. However, this placement may not be the ideal one for some hospitals, especially those with a CoC-accredited cancer program where cancer registrars have broader job functions than what are normally included in health information management. Electronic medical records eliminate the need to place the cancer registry within the HIM for easy access to the records. This article analyzes the pros and cons of some of the most common placements used by hospitals, as well as the impact each design has on information flow and data utilization.

Huang H, Sim HG, Chong TW, et al.
Evaluation of data completeness of the prostate cancer registry after robotic radical prostatectomy.
Ann Acad Med Singapore. 2010; 39(11):848-53 [PubMed] Related Publications
INTRODUCTION: This study evaluated the data completeness in the registration of prostate cancer after robotic radical prostatectomy (RRP) in the Urological Cancer Registry at the Singapore General Hospital (SGH), and its compliance to the international standards of US Commission on Cancer (CoC).
MATERIALS AND METHODS: A certified cancer registrar reviewed all RRP cases between June 2003 and July 2008 in the Urological Cancer Registry at SGH.
RESULTS: A total of 365 cases were reviewed. The results showed that 351 (96.2%) of RRP patients' demographic data were captured and 321 (87.9%) of RRP patients were staged. According to the international standards of CoC for an academic institution, the requirement is to capture 100% of all cancer cases and stage at least 90% of them. As for data completeness, 317 (86.7%) of RRP details were captured as compared to the CoC standard requirement of 90%.
CONCLUSIONS: The existing manual cancer registry does not fully meet the CoC standards. Hence, the registry increased sources of case-finding and used active case-finding. With improvements made to the data collection methodology, the number of prostate cancer cases identified has been increased by 52.1% from 215 in 2007 to 327 in 2009. The registry is expected to be fully compliant with the CoC standard with the recruitment of more full time cancer registrars when a new web-based cancer registry is in full operation.

Backus A, Kolender ER
Going the distance for certified cancer registrars.
J Registry Manag. 2009; 36(3):83-5 [PubMed] Related Publications
Cancer registry departments are using electronic technology to solve the local and national Certified Tumor Registrar (CTR) shortages. As demand for CTRs continues to increase without an accompanied increase in the supply of qualified personnel, cancer registry departments are looking for new solutions to this growing local and national trend. In order to solve this problem, some cancer registries have started using telecommunication to fill the empty positions within their departments. This is the case at Roper St. Francis Healthcare (RSFH) in Charleston, SC, where Cancer Registry Manager, Ellen Kolender, RHIA, CTR, used telecommuting to fill one full-time and one part-time CTR position.

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