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Registry and Registrar Associations

Associations of Registries and Registrars (11 links)

Related Publications

Strickland-Marmol LB, Muro-Cacho CA, Washington K, Foulis PR
"Ask The Pathologist": An Internet Forum Facilitating Communication Between Cancer Registrars and Pathologists.
Arch Pathol Lab Med. 2018; 142(10):1275-1283 [PubMed] Related Publications

Noone AM, Negoita S, Schussler N, et al.
Medical Record-Documented TNM Categories and Stage Group: Feasibility of Use for Cancer Surveillance.
J Registry Manag. 2017; 44(2):46-53 [PubMed] Related Publications
BACKGROUND AND OBJECTIVES: In 2016, with the discontinuation of the Collaborative Staging system, the cancer surveillance community planned to rely on physician-assigned TNM stage documented in the medical record. The objectives of this study were to describe how often physician-assigned staging components were documented in the medical records accessible to the registrar and to assess the agreement of these physician-assigned components with registrar-assigned values. METHODS: Medical record documents for 282 routine cases from 5 cancer sites were selected from the Surveillance, Epidemiology, and End Results registries. First, the documents were evaluated to determine how often they contained the TNM staging components. Next, the available components were compared with values assigned by a panel of experienced cancer registrars. The agreement for each type of source document was estimated among 100 cases. RESULTS: Overall, the physician-assigned TNM components and stage groups were not often found in the medical record. Pathologic T and N were found most frequently (65% and 64%, respectively). Agreement between physician-assigned and registrar-assigned TNM components varied (cT = 57%, cN = 72%, pT = 83%, pN = 89%). For stage group, agreement was better when the stage group was documented more than once (clinical, 71%; pathologic, 67%). Path reports included valid pT and pN in 79% and 89% of cases, respectively. Oncology consultation notes provided valid cT for 83% of cases. Validity was lower for other document sources. CONCLUSIONS: The physician-assigned TNM components will rarely be documented in the medical record and available to the registrar. Collection of accurate stage information for cancer surveillance requires cancer registrars to review the full medical record and assign the TNM components required for stage.

Nash R, Ward KC, Jemal A, et al.
Frequency and distribution of primary site among gender minority cancer patients: An analysis of U.S. national surveillance data.
Cancer Epidemiol. 2018; 54:1-6 [PubMed] Free Access to Full Article Related Publications
BACKGROUND: Transgender people and persons with disorders of sex development (DSD) are two separate categories of gender minorities, each characterized by unique cancer risk factors. Although cancer registry data typically include only two categories of sex, registrars have the option of indicating that a patient is transgender or has a DSD.
METHODS: Data for primary cancer cases in 46 states and the District of Columbia were obtained from the North American Association of Central Cancer Registries (NAACCR) database for the period 1995-2013. The distributions of primary sites and categories of cancers with shared risk factors were examined separately for transgender and DSD patients and compared to the corresponding distributions in male and female cancer patients. Proportional incidence ratios were calculated by dividing the number of observed cases by the number of expected cases. Expected cases were calculated based on the age- and year of diagnosis-specific proportions of cases in each cancer category observed among male and female patients.
RESULTS: Transgender patients have significantly elevated proportional incidence ratios (95% confidence intervals) for viral infection induced cancers compared to either males (2.3; 2.0-2.7) or females (3.3; 2.8-3.7). Adult DSD cancer patients have a similar distribution of primary sites compared to male or female patients but DSD children with cancer have ten times more cases of testicular malignancies than expected (95% confidence interval: 4.7-20).
CONCLUSION: The proportions of certain primary sites and categories of malignancies among transgender and DSD cancer patients are different from the proportions observed for male or female patients.

Cheng CY, Chiang CJ, Hsieh CH, et al.
Is quality of registry treatment data related to registrar experience and workload? A study of Taiwan cancer registry data.
J Formos Med Assoc. 2018; 117(12):1093-1100 [PubMed] Related Publications
BACKGROUND: Although cancer treatment information has been collected through the Cancer Registry system in Taiwan for more than 10 years, the accuracy of such data has never been evaluated. This study examined the accuracy rate between registrar experience and on-site chart review for the first course of cancer treatment.
METHODS: In this retrospective chart review study, 392 randomly selected medical records from 14 hospitals were re-abstracted by experienced abstractors. The kappa coefficients of accuracy for the abstracting data were calculated against the gold standard. Correlations between registrar background and workload were then identified through regression analysis.
RESULTS: Regarding surgery type, low accuracy rates were noted for gastric cancer (84.0%), oral cavity cancer (84.6%), and bladder cancer (88.9%). For chemotherapy, low accuracy rates were observed for hematopoietic diseases (81.3%) and esophageal cancer (88.0%). For radiotherapy, low accuracy rates were noted for esophageal cancer (80.0%), cervical cancer (81.8%), and lymphoma (85.7%). When stratifying by surgery type after adjustment for hospital caseload, a high accuracy rate was found for cancer registrars who had progressed from basic to advanced licenses within 5 years of graduating.
CONCLUSION: The accuracy rate for the first course of cancer treatment was affected by the cancer type and the experience of cancer registrars, but it was not affected by the workload of cancer registrars. We recommend that cancer registrars with basic licenses upgrade to advanced licenses as soon as possible. Medical record collaboration should establish documentation for checklist of radiotherapy and surgical operation records.

Schroeck FR, Sirovich B, Seigne JD, et al.
Assembling and validating data from multiple sources to study care for Veterans with bladder cancer.
BMC Urol. 2017; 17(1):78 [PubMed] Free Access to Full Article Related Publications
BACKGROUND: Despite the high prevalence of bladder cancer, research on optimal bladder cancer care is limited. One way to advance observational research on care is to use linked data from multiple sources. Such big data research can provide real-world details of care and outcomes across a large number of patients. We assembled and validated such data including (1) administrative data from the Department of Veterans Affairs (VA), (2) Medicare claims, (3) data abstracted by tumor registrars, (4) data abstracted via chart review from the national electronic health record, and (5) full text pathology reports.
METHODS: Based on these combined data, we used administrative data to identify patients with newly diagnosed bladder cancer who received care in the VA. To validate these data, we first compared the diagnosis date from the administrative data to that from the tumor registry. Second, we measured accuracy of identifying bladder cancer care in VA administrative data, using a random chart review (n = 100) as gold standard. Lastly, we compared the proportion of patients who received bladder cancer care among those who did versus did not have full text bladder pathology reports available, expecting that those with reports are significantly more likely to receive care in VA.
RESULTS: Out of 26,675 patients, 11,323 (42%) had tumor registry data available. 90% of these patients had a difference of 90 days or less between the diagnosis dates from administrative and registry data. Among 100 patients selected for chart review, 59 received bladder cancer care in VA, 58 of which were correctly identified using administrative data (sensitivity 98%, specificity 90%). Receipt of bladder cancer care was substantially more common among those who did versus did not have bladder pathology available (96% vs. 43%, p < 0.001).
CONCLUSION: Merging administrative with electronic health record and pathology data offers new possibilities to validate the use of administrative data in bladder cancer research.

Freeman MB, Pollack LA, Rees JR, et al.
Capture and coding of industry and occupation measures: Findings from eight National Program of Cancer Registries states.
Am J Ind Med. 2017; 60(8):689-695 [PubMed] Free Access to Full Article Related Publications
BACKGROUND: Although data on industry and occupation (I&O) are important for understanding cancer risks, obtaining standardized data is challenging. This study describes the capture of specific I&O text and the ability of a web-based tool to translate text into standardized codes.
METHODS: Data on 62 525 cancers cases received from eight National Program of Cancer Registries (NPCR) states were submitted to a web-based coding tool developed by the National Institute for Occupational Safety and Health for translation into standardized I&O codes. We determined the percentage of sufficiently analyzable codes generated by the tool.
RESULTS: Using the web-based coding tool on data obtained from chart abstraction, the NPCR cancer registries achieved between 48% and 75% autocoding, but only 12-57% sufficiently analyzable codes.
CONCLUSIONS: The ability to explore associations between work-related exposures and cancer is limited by current capture and coding of I&O data. Increased training of providers and registrars, as well as software enhancements, will improve the utility of I&O data.

Cheng CY, Chiang CJ, Hsiao JK, Lai MS
Are hospital cancer caseloads related to the validity of staging data reported? A lesson from National Cancer Registry in Taiwan.
Jpn J Clin Oncol. 2017; 47(1):18-24 [PubMed] Related Publications
OBJECTIVE: Data from the National Taiwan Cancer Registry have been widely used since 2002 to assess quality of health, but its quality of coding in cancer staging data has not been discussed. This study assessed the agreement rate for staging by site visit at medical institutes.
METHODS: In this retrospective chart review study, 392 cancer patients in year 2013 were randomly selected from 14 hospitals; the senior cancer registrar reviewers had compared each original chart with data from the Taiwan Cancer Registry to assess agreement rate for staging. The hospitals were classified into two groups on the basis of the number of cancer patients. The kappa (κ) statistic method and multiple regression analysis were used to compare among the medical institutes and qualified cancer registrars.
RESULTS: The agreement rate was high in pharynx, esophageal, rectal, breast and prostate cancers, and low in ovarian and other cancers for clinical and pathological staging. After adjustment for the experience of the qualified cancer registrar, low-caseload hospitals had a significantly lower clinical staging agreement rate than that of high-caseload hospitals. After controlling the hospital cancer caseloads the cancer registrar background becomes one of significant factor. That is long duration between a basic license to an advanced license exceeded 5 years, having lower agreement rate.
CONCLUSIONS: The reliability of staging data in the Taiwan Cancer Registry is affected not only by the cancer type but also by the number of patients treated in hospital. Moreover, the experience of cancer registrar strongly influences agreement rate, especially in clinical staging.

Hawhee V, Williams VL
Registry Resources: A Summary Resource Guide for Education, Training, and Online Help for New and Current Cancer Registrars: Part II.
J Registry Manag. 2016; 41(3):152-155 [PubMed] Related Publications
The Registry Resources guide useful and beneficial education resources to new and current cancer registrars. Further development of this resource guide can incorporate more state standards along with any other resources that you use on a regular basis that were not included in this resource guide.

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.

Kiernan CM, Whiteside MA, Solorzano CC
Cancer Registries: Can We Improve the Quality of Thyroid Cancer Data?
Ann Surg Oncol. 2017; 24(5):1202-1207 [PubMed] Related Publications
BACKGROUND: Cancer registries are used to report cancer care trends and outcomes. Information from these data sets is utilized to craft practice guidelines and management recommendations. Limited knowledge is available regarding the quality of the data contained within registries. We sought to determine the accuracy of a single variable, 'surgery of the primary site', in the Tennessee Cancer Registry (TCR).
METHODS: A retrospective review of the TCR thyroid database was performed. Hospital facilities were classified as either Commission on Cancer (CoC) or non-CoC accredited. Certified Tumor Registrars at the TCR reviewed the abstracted text and/or telephoned the reporting facility staff to confirm the definitive thyroid procedure.
RESULTS: A total of 921 thyroid cancer cases, diagnosed/treated at TN facilities during 2004-2011, were coded with thyroid lobectomy (TL). Overall, 369 (40 %) were incorrectly coded, of which 247(67 %) were changed to total thyroidectomy. The majority of cases (80 %) were reported by CoC facilities. When compared by facility type, 42 % of records submitted from CoC facilities contained incorrect codes for the variable 'surgery of the primary site' TL compared with 34 % of records submitted by non-CoC facilities (p = 0.047).
CONCLUSION: In this study of the TCR, 40 % of records contained inaccurate coding of the variable 'surgery of the primary site'. Upon validation, 27 % of all records were changed from TL to total thyroidectomy. The rate of incorrect coding was higher in CoC reporting facilities than in non-CoC facilities. Using text-to-code re-abstraction audits and facility contact these discrepancies can be validated and corrected to improve data quality.

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.

Gupta S, Aitken JF, Bartels U, et al.
Paediatric cancer stage in population-based cancer registries: the Toronto consensus principles and guidelines.
Lancet Oncol. 2016; 17(4):e163-e172 [PubMed] Related Publications
Population-based cancer registries generate estimates of incidence and survival that are essential for cancer surveillance, research, and control strategies. Although data on cancer stage allow meaningful assessments of changes in cancer incidence and outcomes, stage is not recorded by most population-based cancer registries. The main method of staging adult cancers is the TNM classification. The criteria for staging paediatric cancers, however, vary by diagnosis, have evolved over time, and sometimes vary by cooperative trial group. Consistency in the collection of staging data has therefore been challenging for population-based cancer registries. We assembled key experts and stakeholders (oncologists, cancer registrars, epidemiologists) and used a modified Delphi approach to establish principles for paediatric cancer stage collection. In this Review, we make recommendations on which staging systems should be adopted by population-based cancer registries for the major childhood cancers, including adaptations for low-income countries. Wide adoption of these guidelines in registries will ease international comparative incidence and outcome studies.

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.

Cremers RG, Aben KK, van Oort IM, et al.
The clinical phenotype of hereditary versus sporadic prostate cancer: HPC definition revisited.
Prostate. 2016; 76(10):897-904 [PubMed] Free Access to Full Article Related Publications
BACKGROUND: The definition of hereditary prostate cancer (HPC) is based on family history and age at onset. Intuitively, HPC is a serious subtype of prostate cancer but there are only limited data on the clinical phenotype of HPC. Here, we aimed to compare the prognosis of HPC to the sporadic form of prostate cancer (SPC).
METHODS: HPC patients were identified through a national registry of HPC families in the Netherlands, selecting patients diagnosed from the year 2000 onward (n = 324). SPC patients were identified from the Netherlands Cancer Registry (NCR) between 2003 and 2006 for a population-based study into the genetic susceptibility of PC (n = 1,664). Detailed clinical data were collected by NCR-registrars, using a standardized registration form. Follow-up extended up to the end of 2013. Differences between the groups were evaluated by cross-tabulations and tested for statistical significance while accounting for familial dependency of observations by GEE. Differences in progression-free and overall survival were evaluated using χ(2) testing with GEE in a proportional-hazards model.
RESULTS: HPC patients were on average 3 years younger at diagnosis, had lower PSA values, lower Gleason scores, and more often locally confined disease. Of the HPC patients, 35% had high-risk disease (NICE-criteria) versus 51% of the SPC patients. HPC patients were less often treated with active surveillance. Kaplan-Meier 5-year progression-free survival after radical prostatectomy was comparable for HPC (78%) and SPC (74%; P = 0.30). The 5-year overall survival was 85% (95%CI 81-89%) for HPC versus 80% (95%CI 78-82%) for SPC (P = 0.03).
CONCLUSIONS: HPC has a favorable clinical phenotype but patients more often underwent radical treatment. The major limitation of HPC is the absence of a genetics-based definition of HPC, which may lead to over-diagnosis of PC in men with a family history of prostate cancer. The HPC definition should, therefore, be re-evaluated, aiming at a reduction of over-diagnosis and overtreatment among men with multiple relatives diagnosed with PC. Prostate 76:897-904, 2016. © 2016 The Authors. The Prostate published by Wiley Periodicals, Inc.

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] Free Access to Full Article 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.

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