• Title/Summary/Keyword: data registry

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Cancer Registration in Korea: The Present and Furtherance (암 등록사업의 현황과 추진방향)

  • Ahn, Yoon-Ok
    • Journal of Preventive Medicine and Public Health
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    • v.40 no.4
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    • pp.265-272
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    • 2007
  • It was not until 1975 that cancer registration was initiated in Korea; voluntary registration of cancer patients of training hospitals throughout the country began under the auspices of the Korean Cancer Society(KCS). However, an official cancer registration, the Korea Central Cancer Registry(KCCR), began on July 1st, 1980. Forty-five training and two non-training hospitals throughout the country initiated registration of patients in whom neoplasms had been found. Data related to case information specified are to be sent to the KCCR at the National Medical Center(it moved at National Cancer Center in 2000). The initial cancer registration of KCS was merged to the KCCR in 1980. Although the KCCR covers most all the large training hospitals in Korea, it cannot provide incidence data. It is, however, the only of its kind in the world, being neither hospital nor population based. The first population based cancer registry(PBCR) was launched in a small county, Kangwha(it has around 80,000 inhabitants), by Yonsei University Medical College in 1983. All data were collected by active methods, and incidence statistics for 1986-1992 appeared in Vol VII of the CI5. Another PBCR, Seoul Cancer Registry(SCR), started in 1991. It was supported by a civilian foundation, the Korean Foundation for Cancer Research. The basic idea of case registration of SCR was the incorporation of KCCR data to PBCR, e. g. dual sources of case registration, i.e., from the KCCR and also including cases diagnosed in small hospitals and other medical facilities. Assessing completeness and validity of case registration of SCR, the program and methodology used by the SCR was later extended to other large cities and areas in Korea, and the PBCR in each area was established. Cancer incidence statistics of Seoul for 1993-1997, Busan for 1996-1997, and Daegu for 1997-1998, as well as Kangwha for 1993-1997, appeared eventually in Vol VIII of the CI5. The Korean or 'pillar' model for a PBCR is a new one. The KCCR data file is a reliable basis, as a pillar, for a PBCR in each area. The main framework of the model for such a registry is the incorporation of a KCCR data file with data from additionally surveyed cases; the data related to cancer deaths, medical insurance claims, and visit-and surveillance of non-KCCR medical facilities. Cancer registration has been adopted as a national cancer control program by Korean government in 2004 as the Anti-Cancer Act was enacted. Since then, some officers have tried to launch a nation-wide PBCR covering whole country. In the meantime, however, cancer registration was interrupted and discontinued for years due to the Privacy Protection Law, which was solved by an amendment of the Anti-Cancer Act in 2006. It would be premature to establish the nation-wide PBCR in Korea. Instead, continuous efforts to improve the completeness of registration of the KCCR, to progress existing PBCRs, and to expand PBCRs over other areas are still to be devoted. The nation-wide PBCR in Korea will be established eventually with summation of the PBCRs of the Korean model.

Agreement of Iranian Breast Cancer Data and Relationships with Measuring Quality of Care in a 5-year Period (2006-2011)

  • Keshtkaran, Ali;Sharifian, Roxana;Barzegari, Saeed;Talei, Abdolrasoul;Tahmasebi, Seddigheh
    • Asian Pacific Journal of Cancer Prevention
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    • v.14 no.3
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    • pp.2107-2111
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    • 2013
  • Objectives: To investigate data agreement of cancer registries and medical records as well as the quality of care and assess their relationship in a 5-year period from 2006 to 2011. Methods: The present cross-sectional, descriptive-analytical study was conducted on 443 cases summarized through census and using a checklist. Data agreement of Nemazi hospital-based cancer registry and the breast cancer prevention center was analyzed according to their corresponding medical records through adjusted and unadjusted Kappa. The process of care quality was also computed and the relationship with data agreement was investigated through chi-square test. Results: Agreement of surgery, radiotherapy, and chemotherapy data between Nemazi hospital-based cancer registry and medical records was 62.9%, 78.5%, and 81%, respectively, while the figures were 93.2%, 87.9%, and 90.8%, respectively, between breast cancer prevention center and medical records. Moreover, quality of mastectomy, lumpectomy, radiotherapy, and chemotherapy services assessed in Nemazi hospital-based cancer registry was 12.6%, 21.2%, 35.2%, and 15.1% different from the corresponding medical records. On the other hand, 7.4%, 1.4%, 22.5%, and 9.6% differences were observed between the quality of the above-mentioned services assessed in the breast cancer prevention center and the corresponding medical records. A significant relationship was found between data agreement and quality assessment. Conclusion: Although the results showed good data agreement, more agreement regarding the cancer stage data elements and the type of the received treatment is required to better assess cancer care quality. Therefore, more structured medical records and stronger cancer registry systems are recommended.

Roles of Cancer Registries in Enhancing Oncology Drug Access in the Asia-Pacific Region

  • Soon, Swee-Sung;Lim, Hwee-Yong;Lopes, Gilberto;Ahn, Jeonghoon;Hu, Min;Ibrahim, Hishamshah Mohd;Jha, Anand;Ko, Bor-Sheng;Lee, Pak Wai;MacDonell, Diana;Sirachainan, Ekaphop;Wee, Hwee-Lin
    • Asian Pacific Journal of Cancer Prevention
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    • v.14 no.4
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    • pp.2159-2165
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    • 2013
  • Cancer registries help to establish and maintain cancer incidence reporting system, serve as a resource for investigation of cancer and its causes, and provide information for planning and evaluation of preventive and control programs. However, their wider role in directly enhancing oncology drug access has not been fully explored. We examined the value of cancer registries in oncology drug access in the Asia-Pacific region on three levels: (1) specific registry variable types; (2) macroscopic strategies on the national level; and (3) a regional cancer registry network. Using literature search and proceedings from an expert forum, this paper covers recent cancer registry developments in eight economies in the Asia-Pacific region - Australia, China, Hong Kong, Malaysia, Singapore, South Korea, Taiwan, and Thailand - and the ways they can contribute to oncology drug access. Specific registry variables relating to demographics, tumor characteristics, initial treatment plans, prognostic markers, risk factors, and mortality help to anticipate drug needs, identify high-priority research area and design access programs. On a national level, linking registry data with clinical, drug safety, financial, or drug utilization databases allows analyses of associations between utilization and outcomes. Concurrent efforts should also be channeled into developing and implementing data integrity and stewardship policies, and providing clear avenues to make data available. Less mature registry systems can employ modeling techniques and ad-hoc surveys while increasing coverage. Beyond local settings, a cancer registry network for the Asia-Pacific region would offer cross-learning and research opportunities that can exert leverage through the experiences and capabilities of a highly diverse region.

A study on the adaptive query conversion using TMDR-based global query (TMDR 기반의 글로벌 쿼리를 이용한 적응적 쿼리 변환에 관한 연구)

  • Hwang, Chi-Gon;Shin, Hyo-Young;Jung, Kye-Dong
    • Proceedings of the Korean Institute of Information and Commucation Sciences Conference
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    • 2012.10a
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    • pp.966-969
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    • 2012
  • This study suggests a query conversion method based on Topic Maps MetaData Registry(TMDR) in order to solve heterogeneity problems distributed in networks and to integrate data efficiently. In order to integrate distributed data, TMDR provides global schema and it solves heterogeneity problem within local data using query conversion method. After analyzing relationship between Meta Schema Ontology(MSO) of eXtended Meta Data Registry(XMDR) and Topic Maps, this method allows integrated access through Meta Location(ML) which manages accessing information of local data. The processing method is to produce a global query for global processing by using TMDR and then to make the produced global query approach to systems distributed through networks so that allows integrated access at the end. For this, we propose a method to convert a global query into a query which is adaptive to local query.

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Construction and Validation of Hospital-Based Cancer Registry Using Various Health Records to Detect Patients with Newly Diagnosed Cancer: Experience at Asan Medical Center (의무기록의 다각적 활용을 통한 충실도 높은 병원 암등록 체계의 구축: 서울아산병원의 경험)

  • Kim, Hwa-Jung;Cho, Jin-Hee;Lyu, Yong-Man;Lee, Sun-Hye;Hwang, Kyeong-Ha;Lee, Moo-Song
    • Journal of Preventive Medicine and Public Health
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    • v.43 no.3
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    • pp.257-264
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    • 2010
  • Objectives: An accurate estimation of cancer patients is the basis of epidemiological studies and health services. However in Korea, cancer patients visiting out-patient clinics are usually ruled out of such studies and so these studies are suspected of underestimating the cancer patient population. The purpose of this study is to construct a more complete, hospital-based cancer patient registry using multiple sources of medical information. Methods: We constructed a cancer patient detection algorithm using records from various sources that were obtained from both the in-patients and out-patients seen at Asan Medical Center (AMC) for any reason. The medical data from the potentially incident cancer patients was reviewed four months after first being detected by the algorithm to determine whether these patients actually did or did not have cancer. Results: Besides the traditional practice of reviewing the charts of in-patients upon their discharge, five more sources of information were added for this algorithm, i.e., pathology reports, the national severe disease registry, the reason for treatment, prescriptions of chemotherapeutic agents and radiation therapy reports. The constructed algorithm was observed to have a PPV of 87.04%. Compared to the results of traditional practice, 36.8% of registry failures were avoided using the AMC algorithm. Conclusions: To minimize loss in the cancer registry, various data sources should be utilized, and the AMC algorithm can be a successful model for this. Further research will be required in order to apply novel and innovative technology to the electronic medical records system in order to generate new signals from data that has not been previously used.

Implementation and Evaluation of the Registry Model for Systematically Referencing Standards in e-Business Field (전자거래 분야에서의 체계적인 표준 참조를 위한 레지스트리 모델 구현 및 평가)

  • Hwang, In-Tak;Jeong, Dong-Won
    • Journal of Information Technology Services
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    • v.10 no.3
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    • pp.95-112
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    • 2011
  • This paper proposes a new registry model for systematically referencing standards in e-Business field. We have many systems that provide standards and additional information. However, there are several problems such as inefficient standard information, dependency on a standard type, high standard information acquisition cost, no relations between standard information, and so on. In this paper, a new registry model and its prototype implementation are described. The proposed model is defined based on ISO/IEC 11179-Metadata registries, which is one of the international standards for interoperability between data. The proposed model provides an integrated- systematic standard information support, and also considers technology stack and business processes for e-Business systems. This paper develops a prototype for the proposed model and implementation result. Finally, to show the contribution of our proposal, this paper shows the comparative evaluation between previous systems and our proposal with various comparative items.

Lifestyle Factors Including Diet and Leukemia Development: a Case-Control Study from Mumbai, India

  • Balasubramaniam, Ganesh;Saoba, Sushama Laxman;Sarhade, Monika Nilesh;Kolekar, Suvarna Anand
    • Asian Pacific Journal of Cancer Prevention
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    • v.14 no.10
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    • pp.5657-5661
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    • 2013
  • In India, among males, leukemia rates vary across the country. The present unmatched hospital-based case-control study conducted at Tata Memorial Hospital included subjects registered between the years 1997-99. There were 246 leukemia cases and 1,383 normal controls. Data on demographics, lifestyle, diet and occupation history were recorded. Cigarette (OR=2.1) and bidi smoking (OR=3.4) showed excess risk for leukemia. Odds ratios were 3.9 for fish-eaters, 0.40 for chilli eaters, 1.5 for milk drinkers and 0.60 for coffee drinkers, compared to non-drinkers/eaters. However, neither exposure to use of pesticides nor cotton dust showed any excess risk for leukemia.

Designing a Meatadata Registry Using SemanticWeb Technology (시맨틱웹 기반 메타데이터 레지스트리 설계에 관한 연구)

  • Oh, Sam-Gyun
    • Journal of Korean Library and Information Science Society
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    • v.36 no.3
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    • pp.109-136
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    • 2005
  • This paper describes the major components of ISO/IEC 11179 metadata registry (MDR) standard designed to promote data interoperability between systems, explains and discusses semantic web technology and Web ontology languages initiated by W3C that can be employed to further enhance data interoperability, and finally proposes a framework for a new RDF/OWL-based MDR to convert from the current human-readable MDR to machine-readable MDR. If the new MDR is successful, we might be able to offer a better customized information service to users. The future research will be concerned with evaluating objectively the effectiveness of machine-readable MDR in meeting the needs of real users.

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Coverage, Density and Completeness of Sources used in Tehran Metropolitan Area Cancer Registry: According to the Data of Esophageal Cancer, 2003-2007

  • Aghaei, Abbas;Najafi, Farid;Mosavi-Jarrahi, Alireza;Ahmadi-Jouibari, Toraj
    • Asian Pacific Journal of Cancer Prevention
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    • v.13 no.8
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    • pp.3617-3619
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    • 2012
  • Background: The completeness of cancer registration is a major validity index of any reported cancer incidence. The present study aimed to evaluate the esophageal cancer incidence registered in the Tehran Metropolitan Area Cancer Registry. Materials and methods: The data on esophageal cancer abstracted from three sources of 1) pathology departments, 2) medical records, and 3) death certificates during 2003 till 2007 were utilized. The completeness of the data sources were evaluated using coverage (defined as the proportion of a community population with esophageal cancer identified by the source) and density (defined as the proportion of non-empty fields of the data by source). Results: A total 1,404 cases of esophageal cancer were reported for the duration of the study. Pathology provided 771, medical records 432, and death certificates 609. The coverage was 0.55 for pathology, 0.31 for medical records, and 0.43 for death certificates. The respective density values were 0.82, 0.96 and 0.98, respectively. Pathology (0.45) was the most complete source followed by medical records (0.42), and death certificates (0.29). Discussion: A low degree of completeness dictates putting more effort into case finding plus abstracting data more thoroughly.

Evaluation of the Completeness and Validity of the Registration in the Implementation Study of Seoul Cancer Registry (ISSCR) (서울시 지역암등록사업 추진연구의 암등록 충실도 및 타당도 평가)

  • Shin, Myung-Hee;Ahn, Yoon-Ok
    • Journal of Preventive Medicine and Public Health
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    • v.27 no.4 s.48
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    • pp.735-745
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    • 1994
  • The incidence data (1991. 7. 1$\sim$1992. 6. 30) from the Implementation Study of Seoul Cancer Registry (ISSCR) were evaluated in terms of its completeness and validity. Two indicators for the completeness, Mortality/Incidence ratio (M/I ratio) and Age-specific Incidence Curve, showed fairy good registration throughout the age-sex specific strata, except the strata aged over 75 years old. The strata had very high M/I ratio (over 100%) and decreasing pattern of incidence, which suggested incomplete registration of cancer in this group. The active surveillance by a ISSCR staff improved the registration rate especially among elderlies. From the site specific M/I ratio, we found that liver cancer had oddly high M/I ratio. Since this high M/I ratio of liver cancer appears consistently in other reliable cancer registries, it is more like to be due to the high fatality of it rather than incomplete registration. The validity of the incidence data was assessed by three indicators; Histological Verification (HV%), Primary Site Unknown (PSU%), and Age Unknown (Age UNK%). The average HV% were 77% for men and 85% for women, which were slightly lower than those of other reliable cancer registries. This low HV% might be due to the considerable size of relative frequency of liver cancer in Korea, regarding the fact that the diagnosis of liver cancer is made mostly by non-biopsical radiologic methods (CT, Ultrasono, Angiography, MRI etc.). The level of PSU% and Age UNK% were in acceptable range, but not low enough, especially in terms of Age UNK%. Although ISSCR data had acceptable quality in general, it is needed to have more hospitals participate in the registry surveillance, to make registery data merged with death certificate data regulary, and educate the registration stans to be more competent and dedicated.

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