Journal of registry management最新文献

Introduction: Scrotal squamous cell carcinomas (SCCs) are rare malignancies that are not considered to be associated with the human papillomavirus (HPV) by the International Agency for Research on Cancer. However, recent studies have detected HPV in these cancers. We sought to determine the presence of HPV types among scrotal cancer cases identified through population-based cancer registries.

Methods: Primary scrotal SCCs diagnosed from 2014 to 2015 were identified, and tissue sections from formalin-fixed, paraffin-embedded tissue blocks were obtained for laboratory testing. A pathology review was performed to confirm morphology. HPV testing was performed using L1 consensus polymerase chain reaction analysis. Immunohistochemistry was used to evaluate p16INK4a (p16) expression.

Results: Five cases of scrotal SCC were identified from 1 cancer registry. Age at diagnosis ranged from 34 to 75 years (median, 56 years). Four cases were non-Hispanic White, and 1 was non-Hispanic Black. The morphologic subtype of 4 cases was keratinizing (usual), and 1 case was verrucous (warty) histologic subtype. Two of the usual cases of SCC were HPV-negative and p16-negative, and 2 were positive for HPV16 and p16. The verrucous (warty) SCC subtype case was HPV6-positive and p16-negative.

Conclusions: The presence of HPV16 and p16 overexpression in the examined tissue specimens lends additional support for the role of HPV in the etiology of scrotal SCC.

Background: Social Security numbers (SSNs) collected by cancer surveillance registries in the United States are used for patient matching, deduplication, follow-up, and linkage studies. However, due to various reasons, a small proportion of patient records have missing or inaccurate SSNs. Recently, New York State Cancer Registry (NYSCR) data have been linked to LexisNexis data to obtain patient demographic information, including SSNs. The current study evaluated the feasibility of using LexisNexis to improve SSN information in the NYSCR.

Materials and methods: Patients diagnosed during the years 2005-2016, aged 21 or older, in the NYSCR were linked to LexisNexis data. For the matched patients, LexisNexis returned demographic information, including SSNs as available. Percentages of patients without LexisNexis matches or without LexisNexis SSNs were examined by demographic characteristics. We used multivariate logistic regression analyses to further evaluate how patient demographic characteristics affected the likelihood of no LexisNexis matches or of no SSNs returned. For patients with SSNs returned, LexisNexis SSNs were compared with registry SSNs. If patients had prior missing registry SSNs or if LexisNexis SSNs were inconsistent with registry SSNs, we used Match*Pro to review and verify match status. Registry SSNs were updated for those confirmed to be true matches. Improvement of SSNs was assessed based on percentage reduction of missingness.

Results: Of 1,396,078 patient records submitted for LexisNexis linkage, 1.6% were not matched. Among those matched, 1.5% did not have SSNs returned. Multivariate logistic regression analyses indicated that patients who were female, Black, Asian Pacific Islander (API), Hispanic, born outside the United States, deceased, or living in poorer census tracts were more likely to not have LexisNexis matches, or to not have SSNs returned. Among 47,271 patients with missing registry SSNs (3.4%), 26,895 had SSNs returned from LexisNexis, and 24,919 were confirmed to be true matches. After registry SSNs updates, the percentage of SSN missingness was reduced to 1.7%, with a larger absolute reduction observed among those who were younger than 60 years, API, or alive. For 33,057 patients with inconsistent SSNs, 11,474 were due to incorrect consolidations of SSNs in the registry, and those SSNs were subsequently fixed.

Conclusions: LexisNexis is a valuable resource for improving the quality of SSN information in registries. Our results showed that the overall percentage of patients with missing SSNs was reduced from 3.4% to 1.7% after LexisNexis link-age, and SSNs that were initially incorrectly consolidated for some patients were also identified and subsequently fixed. However, the magnitude of SSN improvement varied by patient demographic characteristics. Data quality improvements often require resources, and this evaluation can as

Background: Cancer incidence rates from the Dindigul district were lower by 50% than Chennai in Tamil Nadu for most cancers. This study describes the cancer surveillance statistics and provides an assessment of missing cases from routine registration in the Dindigul Ambilikkai Cancer Registry (DACR), covering a predominantly rural population in the Dindigul district.

Method: A total of 21,214 incident cancers in the DACR during 2003-2017 were examined for this study. Cancer registration was carried out by active case-finding following standard international norms. A total of 12,541 incident cancers registered during 2003-2012 and followed through 2014 were used to estimate survival. Data on follow-up were obtained through a mixture of active and passive methods. Survival probability was estimated by actuarial methods. A random survey carried out independently was used to assess the quality of case ascertainment.

Results: The age-standardized rate (ASR) per 100,000 population was higher among women (76.2) than men (61) in 2013-2017, with both sexes reporting a 17% increase compared to 2003-2007. The most common cancers were cervix (ASR,18.5) and female breast (ASR,17.1), with percentage changes of -19% and +46.1%, respectively. Lung cancer (ASR, 5.5) was top among men with an increasing trend (+57.1%). The percent change in ASR of mouth cancer showed opposite trends among men (+24.3%) and women (- 21.4%). The ASR of colorectal cancers almost doubled among men between 2003-2007 and 2013-2017 (3.9; +94.7%). The 5- and 10-year absolute survival for all cancers were 31% and 20%, respectively. Out of 365 incident cancers that occurred during 2003-2010 in the surveyed areas, 310 (84.9%) were already registered in the DACR, while 55 were newly identified from the survey (15.1%). Inadequate coverage of sources outside the Dindigul district was significant (P = .002), with the highest number of missed cases from hospitals under nongovernment sectors (58.3%). Underascertainment was higher among cancer patients living in hilly regions (60%) and border areas (47.4%) than in core regions (P = .05).

Conclusion: Because of an enacted government order making cancer a notifiable disease, the registry-based cancer surveillance could be extended, covering a population of 80 million in a cost-effective manner with enhanced coverage and systematic evaluation of cancer-screening programs.

Significant data is being produced on the impact of COVID-19 on aspects of clinical care. However, less is known about the impact on real-world health data. The US Food and Drug Administration defines real-world data as "data relating to patient health status and/or the delivery of health care routinely collected from a variety of sources," including disease registries.¹ The methodology used by the Barbados National Registry (BNR)-active pursuit of first-hand clinical data using paper-based charts from multiple sources-makes it an ideal example of real-world data. Real-world data can overcome the barriers to clinical trials often present in small island developing states. This paper reviews the impact of the COVID-19 pandemic on the data of the BNR within the context of the real-world data cycle. Data collected retrospectively for 2016-2018, undergoing traceback during the pandemic, demonstrated a greater reliance on death certificate registration. A 38% reduction in the collection of new cases was noted in the postpandemic period compared to data collected in previous periods. The lack of access to source data delayed cancer registry reporting. We conclude that, given the challenges highlighted during the COVID-19 pandemic, more effort should be placed on providing timely access to real-world data for public health decision-making, particularly in small island developing states.

Introduction: The National Mortality Register (NMR) of Panama is a key element in demographic analysis and in acquiring an updated picture of population health in Panama. The main objectives of this study are to characterize the NMR and to enumerate its strengths and weaknesses.

Methods: We describe the history, processes, and structure of the Vital Statistics Section of the National Institute of Statistics and Census (the curator of the NMR database). In addition, we discuss publication punctuality, underregistration of the data, the proportion of registered deaths certified by medical doctors, and the top 5 causes of death according to the 80 groups of the International Classification of Diseases, Tenth Revision. We also examine works derived from the register's data, from the first publication on its website (2002) until 2019.

Results: The NMR procedures were described. The web reports of the NMR were performed with a delay of between 1 to 2 years. The underregistration of deaths in 2002-2019 was 14.7%, and the national yearly proportion of deaths certified by medical doctors was always above 90%. Hard-to-reach areas had higher underregistration proportions and fewer deaths certified by medical doctors. Information extracted from the NMR supports several national and international reports, geographic information systems, and studies. The most common causes of death between 2002 and 2019 were noncommunicable diseases.

Conclusions: The NMR is a robust official information system. However, hard-to-reach areas require improvement in terms of the NMR. The NMR is used for publishing official reports, writing studies, and updating reports on the current health status of Panama in a timely fashion following international guidelines.

In 2020, the North American Association of Central Cancer Registries (NAACCR) was awarded a contract with the National Cancer Institute (NCI) to begin coordination of a new National Childhood Cancer Registry (NCCR), which would build on the existing infrastructure among both Surveillance, Epidemiology, and End Results (SEER) and National Program of Cancer Registries central registries. NCI and NAACCR planned to use the NCCR to securely match children across registries and with external data sources such as genomic data, medical and pharmacy claims, and other novel sources for residential history, financial toxicity and social determinants of health to build a robust database for pediatric cancer reporting and research. These linkages will enable researchers to address issues surrounding late effects of cancer treatment, recurrence, subsequent malignant neoplasms, and other critical outcomes.