scholarly journals Implementing Yogyakarta Pediatric Cancer Registry for 16 years

2019 ◽  
Vol 59 (4) ◽  
pp. 188-94
Author(s):  
Sri Mulatsih ◽  
Adnina Hariningrum ◽  
Ignatius Purwanto ◽  
Rizki Oktasari
Keyword(s):  
Childhood Cancer ◽  
Cancer Registry ◽  
Pediatric Cancer ◽  
Lymphoblastic Leukemia ◽  
Myeloproliferative Disorders ◽  
Cancer Registries ◽  
Clinical Aspects ◽  
Cancer Registry Data ◽  
Kaplan Meier ◽  
Standard Risk

Background A hospital-based cancer registry can be used as a guide to decision-making. Considering the limited cancer registry data in the population, the Yogyakarta Pediatric Cancer Registry (YPCR) is one of the pioneers of hospital-based pediatric cancer registries in Indonesia. The YPCR was started in 2000 in Dr. Sardjito Hospital. Objective To describe the characteristics of childhood cancer and the outcomes by analyzing overall survival (OS) and event-free survival (EFS) based on data from Yogyakarta Pediatric Cancer Registry. Methods Data were collected from the YPCR for the period of 2000 to 2016. Childhood cancers were classified into 12 groups based on the 3rd edition International Classification for Childhood Cancer (ICCC). Incidence, frequency, and distribution of cases were grouped by sex, age, and patients’ place of residence. Incidence was further analyzed using SPSS software. Kaplan-Meier test was used to analyze OS and EFS. Results Within the study period, 2,441 children aged 0-18 years were diagnosed with cancer. The highest incidence was found in the 1-5-year age group. The most common diagnoses found were leukemia, myeloproliferative disorders, and myelodysplastic disease (58%); lymphoma and reticuloendothelial neoplasm (8%); retinoblastoma (6%); soft tissue and other extra-osseous sarcomas (5%); as well as neuroblastoma and other peripheral nervous cell tumors (5%). The OSs of acute lymphoblastic leukemia (ALL), high risk ALL (HR-ALL), and standard risk (SR-ALL) were 31.8%, 18.5%, and 43.9%, respectively. The EFSs of ALL, HR-ALL, and SR-ALL were 23.9%, 14.7%, and 32.4%, respectively. For solid tumors, the OS was 13.7% and EFS was 6.4%. Conclusion The number of new cases of childhood cancer has increased in the last few years. The Yogyakarta Pediatric Cancer Registry (YPCR), which serves as a hospital-based pediatric cancer registry, has an important role to evaluate clinical and non-clinical aspects of childhood cancer.

Pediatric Cancer Registry in Turkey 2009-2018 (TPOG & TPHD).

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e21510-e21510
Author(s):  
M. Tezer Kutluk ◽  
Akif Yeşilipek
Keyword(s):  
Childhood Cancer ◽  
Children And Adolescents ◽  
Cancer Registry ◽  
Pediatric Cancer ◽  
Health Care Professionals ◽  
Survival Rates ◽  
Age Distribution ◽  
Soft Tissue Sarcomas ◽  
Cancer Registries ◽  
Term Survival

e21510 Background: In Children and adolescents aged 0-14, each year more than 200.000 new cancer cases are expected at global level. For the planning and implementation of an effective pediatric cancer control program, pediatric cancer registries are essential. The long term survival rates have been improved to 85% in high income countries, however it is still less than this in LMICs. This work presents the most updated results of the pediatric cancer registry in Turkey. Methods: Turkish Pediatric Oncology Group and Turkish Pediatric Hematology Association has established the Pediatric Cancer Registry in 2002. The childhood cancer cases registered between 2009-2018 was included in this analysis. International Childhood Cancer Classification System was used for the classification. Essential demographic findings, ICD-O-3 morphology and topography codes were recorded for each case. Results: During the 10 years from 2009 to 2018, 15713 cases were registered. For all cases, median age was 6.7 year (0-17; M/F 8838/6867, 3 hermaphrodite, 5 unknown). Age distribution was 0-4 yrs, 40.7%; 5-9 yrs, 24.4%; 10-14 yrs, 23.2%; 15-19 yrs, 11.7%) The distribution of the tumor types were [number of cases, percentage of total, median age yrs, M/F]: Leukemia (4368, 27.8%, 5.4, 2519/1849); Lymphoma & other RES tumors (2996, 19.1%, 9.7, 2012/979, 1 hermaphrodite & 4 unknown); CNS [brain & spinal] (2089, 13.3%, 7.1, 1142/947); Symphatetic system (1243, 7.9%, 2.4, 650/593); Retinoblastoma (358, 2.3%, 1.4, 204/154); Renal (788, 5.0%, 3.3, 369/419); Liver (260, 1.7%, 1.8, 143/117); Malignant bone (1030, 6.6%, 12.6, 566/464); Soft tissue sarcomas (1052, 6.7%, 7.4, 611/441); Germ cell (971, 6.2%, 8.4, 346/622, 2 hermaphrodite, 1 unknown); Carcinoma & other malignant epithelial (462, 2.9%, 13.7, 226/236); Other/non-specific malignant (96, 0.5%, 7.8, 50/46). Five year survival rate was found as 70.8%. Conclusions: This registry has been used widely among health care professionals since its establishment in 2002. Survival rates for children and adolescents has been improved to 70%. This level of survival is at the acceptable level for an upper middle income country. This registry became a useful source for investigator and decision makers at national and international level.

scholarly journals Validating the use of Medicare Australia billing data to examine trends in skin cancer

F1000Research ◽  
2015 ◽  
Vol 4 ◽  
pp. 1341 ◽  
Author(s):  
Eshini Perera ◽  
Neiraja Gnaneswaran ◽  
Marlon Perera ◽  
Rodney Sinclair
Keyword(s):  
Skin Cancer ◽  
Cancer Registry ◽  
Epidemiological Data ◽  
Cancer Registries ◽  
Billing Data ◽  
Paired Samples ◽  
Cancer Registry Data ◽  
Skin Cancers ◽  
Epidemiological Trends ◽  
High Degree

Background: Epidemiological data surrounding non-melanomatous skin cancer (NMSC) is highly variable, in part due to the lack of government cancer registries. Several studies employ the use of Medical Australia (MA) rebate data in assessing such trends, the validity of which has not been studied in the past. Conversely, melanoma skin cancer is a notifiable disease, and thus, MA and cancer registry data is readily available. The aim of the current study is to assess the use of MA for epidemiological measures for skin cancers, by using melanoma as a disease sample.Methods:  Following ethics approval, data from MA and Victorian Cancer Registry (VCR) from 2004-2008 were extracted. Incidence of MA and VCR unique melanoma cases were compared and stratified by age and local government area (LGA). Regression and a paired-samples t-test were performed.Results:During the study period; 15,150 and 13,886 unique melanoma patients were identified through VCR and MA data sources respectively. An outlier in the >80­ year age group was noted between MA and VCR data. When stratified by age, significant correlation between MA and VCR was observed for all patients (gradient 0.91,R²= 0.936) and following exclusion of >80 patients (gradient 0.96,R²= 0.995). When stratified by LGA, a high degree of observation was observed for all patients (gradient 0.94,R²= 0.977) and following exclusion of >80 patients (gradient 0.996,R²= 0.975).Conclusion:Despite the inclusion of outlier data groups, acceptable correlation between MA and VCR melanoma data was observed, suggesting that MA may be suitable for assessing epidemiological trends. Such principals may be used to validate the use of MA data for similar calculations assessing NMSC trends.

Pediatric cancer registry in Turkey 2009-2019 (TPOG & TPHD).

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e22513-e22513
Author(s):  
M. Tezer Kutluk ◽  
Akif Yeşilipek
Keyword(s):  
Childhood Cancer ◽  
Children And Adolescents ◽  
Cancer Registry ◽  
Pediatric Cancer ◽  
Survival Rates ◽  
Age Distribution ◽  
Soft Tissue Sarcomas ◽  
Essential Element ◽  
Cancer Control ◽  
Middle Income

e22513 Background: The pediatric cancer registry is an essential element of pediatric cancer control. More than 200000 pediatric cancer cases annually are expected in children and adolescents aged 0-14 globally. The current efforts are focusing to improve the survival rates for children and adolescents in LMICs since the survival has already exceeded 80% in most of the high income countries. Here we present the most updated results of the pediatric cancer registry in Turkey. Methods: Pediatric cancer registry has been established by theTurkish Pediatric Oncology Group and Turkish Pediatric Hematology Association in 2002. The childhood cancer cases registered between 2009-2019 was included in this analysis. International Childhood Cancer Classification System was used for the classification. Essential demographic findings, ICD-O-3 morphology and topography codes were recorded for each case. Results: During the 11 years from 2009 to 2019, 17770 cases were registered. For all cases, median age was 6.8 year (0-17; M/F 9973/7789, 3 hermaphrodite, 5 unknown). Age distribution was 0-4 yrs, 40.3%; 5-9 yrs, 24.0%; 10-14 yrs, 23.6%; 15-19 yrs, 12.1%) The distribution of the tumor types were [number of cases, percentage of total, median age yrs, M/F]: Leukemia (4570, 25.7%, 5.5, 2633/1937); Lymphoma & other RES tumors (3477, 19.6%, 9.9, 2324/1150, 1 hermaphrodite & 2 unknown); CNS [brain & spinal] (2493, 14.0%, 6.9, 1363/1129, 1 unkown); Symphatetic system (1426, 8.0%, 2.4, 743/683); Retinoblastoma (348, 2.0%, 1.5, 204/144); Renal (905, 5.1%, 3.2, 435/469, 1 unknown); Liver (304, 1.7%, 1.8, 172/132); Malignant bone (1209, 6.8%, 12.6, 658/551); Soft tissue sarcomas (1221, 6.9%, 7.5, 703/518); Germ cell (1165, 6.6%, 8.8, 426/736, 2 hermaphrodite, 1 unknown); Carcinoma & other malignant epithelial (533, 3.0%, 13.8, 254/279); Other/non-specific malignant (119, 0.7%, 8.5, 58/61). Five year survival rate was found as 71.9%. Conclusions: The data is the most essential part of the cancer control.This registry has been used widely among professionals since its establishment in 2002. Survival rates for children and adolescents has been improved to 70%. This is at the acceptable level for the income level of Turkey which is classified as an upper middle income country. The registry is a useful source for investigators and decision makers at national and international level.

scholarly journals Web-based interactive mapping from data dictionaries to ontologies, with an application to cancer registry

2020 ◽  
Vol 20 (S10) ◽  
Author(s):  
Shiqiang Tao ◽  
Ningzhou Zeng ◽  
Isaac Hands ◽  
Joseph Hurt-Mueller ◽  
Eric B. Durbin ◽  
...  
Keyword(s):  
Cancer Registry ◽  
Data Entry ◽  
Cancer Registries ◽  
The State ◽  
Registry Data ◽  
Data Dictionary ◽  
Web Based ◽  
Cancer Registry Data ◽  
Interactive Mapping ◽  
Data Elements

Abstract Background The Kentucky Cancer Registry (KCR) is a central cancer registry for the state of Kentucky that receives data about incident cancer cases from all healthcare facilities in the state within 6 months of diagnosis. Similar to all other U.S. and Canadian cancer registries, KCR uses a data dictionary provided by the North American Association of Central Cancer Registries (NAACCR) for standardized data entry. The NAACCR data dictionary is not an ontological system. Mapping between the NAACCR data dictionary and the National Cancer Institute (NCI) Thesaurus (NCIt) will facilitate the enrichment, dissemination and utilization of cancer registry data. We introduce a web-based system, called Interactive Mapping Interface (IMI), for creating mappings from data dictionaries to ontologies, in particular from NAACCR to NCIt. Method IMI has been designed as a general approach with three components: (1) ontology library; (2) mapping interface; and (3) recommendation engine. The ontology library provides a list of ontologies as targets for building mappings. The mapping interface consists of six modules: project management, mapping dashboard, access control, logs and comments, hierarchical visualization, and result review and export. The built-in recommendation engine automatically identifies a list of candidate concepts to facilitate the mapping process. Results We report the architecture design and interface features of IMI. To validate our approach, we implemented an IMI prototype and pilot-tested features using the IMI interface to map a sample set of NAACCR data elements to NCIt concepts. 47 out of 301 NAACCR data elements have been mapped to NCIt concepts. Five branches of hierarchical tree have been identified from these mapped concepts for visual inspection. Conclusions IMI provides an interactive, web-based interface for building mappings from data dictionaries to ontologies. Although our pilot-testing scope is limited, our results demonstrate feasibility using IMI for semantic enrichment of cancer registry data by mapping NAACCR data elements to NCIt concepts.

THE EXPERIENCE OF THE ENTRY OF THE CHELYABINSK POPULATION-BASED CANCER REGISTRY INTO THE IARC INTERNATIONAL ASSOCIATION OF CANCER REGISTRIES

2017 ◽  
Vol 63 (4) ◽  
pp. 568-571
Author(s):  
Irina Aksenova ◽  
Alla Domozhirova ◽  
Andrey Vazhenin ◽  
Tatyana Novikova
Keyword(s):  
Cancer Registry ◽  
International Association ◽  
Cancer Control ◽  
Cancer Registries ◽  
Population Based ◽  
Registration System ◽  
Control Programs ◽  
Cancer Registry Data ◽  
Registry System ◽  
Epidemiological Pattern

The registration system of cancer cases has been established and perfected over the last half a century across the world. A unified approach to the registration of cancer cases and provision of high quality cancer registry data are the key to reliable epidemiological indicators in oncology as the essential basis for development of cancer control programs. Any deviations in the approach to registration of cancer cases can distort the epidemiological pattern and lead to incorrect prioritization and misallocation of resources. The Russian Federation has experienced a number of problems in the cancer registry system that requires thoughtful organizational solutions. Possible improvements are here addressed on the background of the application of Chelyabinsk Population-based Cancer Registry for inclusion in Cancer in Five Continents and other IARC publications.

CLL/SLL Is More Common Than Registry Incidence Suggests: A Population-Based Study in Manitoba, Canada.

Blood ◽  
2005 ◽  
Vol 106 (11) ◽  
pp. 1334-1334 ◽  
Author(s):  
Matthew D. Seftel ◽  
Donna Hewitt ◽  
Hui Zhang ◽  
Donna Turner ◽  
Spencer Gibson ◽  
...  
Keyword(s):  
Flow Cytometry ◽  
Cancer Registry ◽  
Census Data ◽  
Tertiary Care ◽  
Cancer Registries ◽  
Population Based ◽  
Lymphocytic Leukemia ◽  
Registry Data ◽  
Population Based Study ◽  
Cancer Registry Data

Abstract Background: The exact incidence of chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL) is unknown. In the appropriate clinical setting, peripheral blood immunophenotyping is often sufficient for diagnosis. Cancer registries that rely only on histological or cytological reporting may inaccurately estimate the incidence of CLL/SLL. The province of Manitoba, with a population of 1.2 million people, has a centralized flow cytometry service as well as a provincial cancer registry. We thus had the opportunity to use these large databases to describe the demographic and clinical patterns of CLL/SLL. This has enabled us to test the hypothesis that registry data underestimates the incidence of this disease. Methods: All patients diagnosed with CLL/SLL between January 1, 1998 and December 31, 2003 were obtained from the Manitoba cancer registry and the central flow cytometry database. Additional clinical characteristics were obtained from a chart review. Results: 491 patients were diagnosed by flow cytometry. In contrast, cancer registry data reported 345 patients with CLL/SLL, 131 (38%) of which were diagnosed in tertiary care centres. Thus, 146 (30%) patients were not known to the provincial cancer registry. Median age of pts was 71 years (range, 24–97). Based on 2001 Canadian census data, the crude incidence of CLL/SLL in Manitoba is estimated to be 7 per 100 000 persons. Other demographic and clinical data of this population-based study will be presented. Conclusion: By incorporating diagnostic immunophenotyping, the incidence of CLL/SLL appears to be higher than that reported by a large Canadian cancer registry. This observation may apply to other local and national jurisdictions, and should be studied further.

scholarly journals Quality of Cancer Registry Data: Botswana Experience, Demonstrating Improvements Over Time

2016 ◽  
Vol 2 (3_suppl) ◽  
pp. 43s-43s
Author(s):  
Malebogo Pusoentsi ◽  
Bame P. Shatera ◽  
Setlogelo Motlogi ◽  
Tuduetso Monagen ◽  
Neo Tapela ◽  
...  
Keyword(s):  
Data Quality ◽  
Cancer Registry ◽  
Death Certificate ◽  
Kaposi Sarcoma ◽  
Cancer Registries ◽  
Health Systems Strengthening ◽  
Registry Data ◽  
Cancer Registry Data ◽  
Over Time

Abstract 69 Background: One of the challenges to addressing the growing burden of cancer in low- and middle-income countries is insufficient data and limitations in quality of cancer registries. The Botswana National Cancer Registry (BNCR), first established in 1999, is an IARC-endorsed population-based registry covering a population of 2.1 million. Here we assess BNCR's data quality over time. Methods: We conducted a retrospective review of BNCR data that was collected between January 1, 2005 and December 31, 2010. We assessed basis of cancer diagnosis, as well as key data quality indices (completeness, consistency, uniqueness, and accuracy) over two time periods: 2005–2007 and 2008–2010. We assessed cancer incidence and distribution during this time period, and reviewed Botswana Ministry of Health operational documents to identify major health care initiatives that may have had a bearing on cancer registry data quality. Results: In total, 8,938 cancer cases were registered 2005-2010. Kaposi sarcoma was the most commonly diagnosed cancer (n=1766, 19.4%), followed by cervical cancer (n=1252, 13.8%) and then breast cancer (n=801, 8.8%). During 2005-2007, 79% of all cancers were morphologically verified and 6% of were verified by death certificate alone. By 2008-2010, 89% of cancers were morphologically verified while none (0%) were verified by death certificate alone. There was a marked difference for basis of Kaposi sarcoma diagnosis (26% in 2005-2007, 43.8% 2008-2010), which changed from mainly clinical to pathology-based diagnosis. Factors that have contributed to this improvement include targeted initiatives such as clinician training, as well as broader health system developments such as general laboratory diagnostic capacitation that has facilitated use of histopathology services for cancer. Conclusion: BNCR data quality has improved over the years. These improvements enhance utility of cancer registry data for healthcare planning, and highlight the merit of cross-cutting health systems strengthening developments. This assessment, and the initiatives that have contributed to BNCR data improvement may be relevant to cancer registries in similar settings. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST: No COIs from the authors.

scholarly journals Prognostic significance of non-urothelial carcinoma of bladder: analysis of nationwide hospital-based cancer registry data in Japan

2020 ◽  
Vol 50 (9) ◽  
pp. 1068-1075
Author(s):  
Yoshiyuki Nagumo ◽  
Koji Kawai ◽  
Takahiro Kojima ◽  
Masanobu Shiga ◽  
Kosuke Kojo ◽  
...  
Keyword(s):  
Urothelial Carcinoma ◽  
Cancer Registry ◽  
Prognostic Significance ◽  
Stage I ◽  
Registry Data ◽  
Oncologic Outcomes ◽  
Small Cell Neuroendocrine Carcinoma ◽  
Cancer Registry Data ◽  
Kaplan Meier ◽  
Aggressive Surgical Approach

Abstract Objectives To identify the prognosis of pure non-urothelial carcinoma (non-UC) of bladder and to compare them with those of pure urothelial carcinoma (UC). Methods We used Japan’s nationwide hospital-based cancer registry data to extract histologically confirmed pure non-UC and UC cases of bladder diagnosed in 2008–2009. We estimated the 5-year overall survival (OS) by a Kaplan–Meier analysis. Results A total of 8094 patients with confirmed histological subtypes of bladder cancer were identified. The most common pure non-UC was squamous cell carcinoma (SQ, n = 192, 2.4%) followed by adenocarcinoma (AC, n = 138, 1.7%) and small cell neuroendocrine carcinoma (SmC, n = 54, 0.7%). The proportion of female patients (48%) was significantly higher in the SQ group compared with the pure UC group (P < 0.001). The 5-year OS rate of the non-UC patients was significantly worse than that of the UC patients (40 vs. 61%, P < 0.001). According to stages, the 5-year OS rates of the stage I and III non-UC patients were significantly worse than those of the UC patients (P = 0.001). Considering histologic subtypes and stages, the 5-year OS rates of the stage I SQ patients were worse than those of the AC and SmC patients (46, 68 and 64%, respectively). Conclusion The prognosis of pure non-UC was worse than that of pure UC, especially in the stage I and III non-UC patients. To improve these patients’ oncologic outcomes, a more aggressive surgical approach may be necessary in stage I patients with non-UC, especially in pure SQ.

Use of State Cancer Surveillance Data to Estimate the Cancer Burden in Disaster Affected Areas–Hurricane Katrina, 2005

2007 ◽  
Vol 22 (4) ◽  
pp. 282-290 ◽  
Author(s):  
Djenaba A. Joseph ◽  
Phyllis A. Wingo ◽  
Jessica B. King ◽  
Lori A. Pollack ◽  
Lisa C. Richardson ◽  
...  
Keyword(s):  
Hurricane Katrina ◽  
Cancer Patients ◽  
Cancer Registry ◽  
Cancer Registries ◽  
Incidence Rates ◽  
Cancer Surveillance ◽  
Registry Data ◽  
Specific Calculation ◽  
Cancer Burden ◽  
Cancer Registry Data

AbstractPurpose:The objective of this study was to estimate the burden of cancer in counties affected by Hurricane Katrina using population-based cancer registry data, and to discuss issues related to cancer patients who have been displaced by disasters.Methods:The cancer burden was assessed in 75 counties in Louisiana, Alabama, and Mississippi that were designated by the Federal Emergency Management Agency as eligible for individual and public assistance. Data from the National Program of Cancer Registries were used to determine three-year average annual age-adjusted incidence rates and case counts during the diagnosis years 2000–2002 for Louisiana and Alabama. Expected rates and counts for the most-affected counties in Mississippi were estimated by direct, age-specific calculation using the 2000–2002 county level populations and the site-, sex-, race-, and age-specific cancer incidence rates for Louisiana.Results:An estimated 23,549 persons with a new diagnosis of cancer in the past year resided in the disaster-affected counties. Fifty-eight percent of the cases were cancers of the lung/bronchus, colon/rectum, female breast, and prostate. Eleven of the top 15 cancer sites by sex and black/white race in disaster counties had >50% of cases diagnosed at the regional or distant stage.Conclusions:Sizable populations of persons with a recent cancer diagnosis were potentially displaced by Hurricane Katrina. Cancer patients required special attention to access records in order to confirm diagnosisand staging, minimize disruption in treatment, and ensure coverage of care. Cancer registry data can be used to provide disaster planners and clinicians with estimates of the number of cancer patients, many of whom maybe undergoing active treatment.

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