Development of a tool for comprehensive evaluation of population-based cancer registries (original) (raw)
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The Evaluation of Comprehensive Cancer Control Efforts: Useful Techniques and Unique Requirements
Cancer Causes & Control, 2005
PhD r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r Objective: To implement a pilot test of performance measures for National Comprehensive Cancer Control (CCC) programs funded by the Centers for Disease Control and Prevention (CDC). Design: A cross-sectional assessment conducted in 2008. Setting: A total of 65 CCC-funded entities (51 states, 7 tribes, and 7 territories or jurisdictions) representing 69 CCC programs. Participants: Comprehensive Cancer Control program staff. Main Outcome Measures: In a process that involved stakeholders from funded programs, academia, and nonprofit organizations, the CDC developed a framework for evaluation and a performance measures worksheet containing 11 performance measures for CCC programs that assessed grantee attainment of key components of CCC as required in the funding announcement. The framework was based on a CCC logic model. The performance measures worksheet contained detailed description of the measures, definitions, and suggested data sources for the 11 measures. Results: Of the 69 programs, 61 completed the worksheets. The median time reported to complete the worksheet was 10 hours (interquartile range = 6-20). Almost all programs reported having representation of relevant populations in their coalition and having conducted a recent assessment of the burden of cancer. Less frequently, programs reported having a written evaluation plan or having enacted policy changes. Additional performance measures described non-CDC funding, the percentage of partners implementing CCC activities, and the percentage of implemented interventions that were evidence-based. Conclusions: This pilot test of the performance measures worksheet established the feasibility of conducting a standardized survey of CCC programs to identify issues of importance to developing and implementing the CCC program at national and program levels. The performance measures provided unique data on CCC grantees to the CDC funders and feedback on performance measures for improving questions on future surveys. Refinement of the performance measures will provide a tool for monitoring processes of action and accountability of grantees and will encourage a culture of quality improvement through systematic evaluation.
Breast Care, 2008
Zusammenfassung Klinische Studien sind der einzige kontrollierte Weg, um neue Therapien mit existierenden Standards zu vergleichen. Leider werden in entwickelten Ländern weniger als 5% der Patienten in klinische Studien aufgenommen, was die Beantwortung wichtiger klinischer Fragen stark behindert. Eine große Anzahl an Krebspatienten wird in Ländern mit beschränkten finanziellen Mitteln behandelt. Hier leisten gut ausgestatte Krebszentren einen großen Beitrag, indem sie eine Großzahl geeigneter Patienten in klinische Studien aufnehmen. Wir stellen ein Pilotprojekt vor, das zum Ziel hat, eine Sammlung an Checklisten zu erstellen, die alle Elemente bezüglich Infrastruktur, Austattung, Personal und Ausbildung eines zur Durchführung von Phase-II-, -III-und -IV-Studien geeigneten Krebszentrums umfasst. Diese Elemente sollen in essentielle, wünschenswerte und optionale Aspekte eingeteilt werden. Außerdem sollen Anforderungen an die Besetzung von Forschungsstellen und die damit verbundene Ausbildungen definiert werden. Weiterhin werden wir die Entwicklung eines fortlaufenden Programms zur Qualitätskontrolle vorschlagen, und jedes potentielle Studienzentrum soll einer initialen Eignungsprüfung unterzogen werden. Die Checklisten könnten außerdem als ein Leitfaden für Zentren dienen, die an klinischen Studien teilnehmen möchten. Das ultimative Ziel dieses Projektes ist es, die Anzahl an Studienzentren in Ländern mit beschränkten Mitteln zu erhöhen, und somit den Patienten, der Wissenschaft sowie der Gesellschaft zu dienen.
BMJ Evidence-Based Medicine, 2019
IntroductionRobust, clearly reported clinical practice guidelines (CPGs) are essential for evidence-based clinical practice. The Reporting Items for practice Guidelines in HealThcare (RIGHT) Statement and Appraisal of Guidelines for Research and Evaluation (AGREE) II instrument were published to improve the methodological and reporting quality in healthcare CPGs.MethodsWe applied the RIGHT Statement checklist and AGREE-II instrument to 48 National Comprehensive Cancer Network (NCCN) guidelines. Our primary objective was to assess the adherence to RIGHT and AGREE-II items. Since neither RIGHT nor AGREE-II can judge the clinical usefulness of a guideline, our study is designed to only focus on the methodological and reporting quality of each guideline.ResultsThe NCCN guidelines demonstrated notable strengths and weaknesses. For example, RIGHT Statement items 19 (conflicts of interest), 7b (description of subgroups) and 13a (clear, precise recommendations) were fully reported in all gu...
Presenting an Evaluation Model for the Cancer Registry Software
2017
Objectives: As cancer is increasingly growing, cancer registry is of great importance as the main core of cancer control programs, and many different software has been designed for this purpose. Therefore, establishing a comprehensive evaluation model is essential to evaluate and compare a wide range of such software. Methods: In this study, the criteria of the cancer registry software have been determined by studying the documents and two functional software of this field. The evaluation tool was a checklist and in order to validate the model, this checklist was presented to experts in the form of a questionnaire. To analyze the results of validation, an agreed coefficient of %75 was determined in order to apply changes. Finally, when the model was approved, the final version of the evaluation model for the cancer registry software was presented. Results: The evaluation model of this study contains tool and method of evaluation. The evaluation tool is a checklist including the gene...
Asian Pacific Journal of Cancer Prevention, 2021
Background: Population based Cancer Registries(PBCRs) are hallmark of cancer surveillance and cancer control activity .The value of cancer registries rely heavily on underlying quality of their data. Current study assessed data quality of four new PBCRs of Chandigarh, SAS Nagar, Mansa and Sangrur covering a total population of 4.5 millions on three quality parameters i.e. comparability, validity and completeness as recommended by International Agency of Research on Cancer(IARC), Lyon, France. Methods: For assessing comparability, data of the registries were reviewed in terms of system of classification and coding, definition of incidence date and rule for multiple primaries. For assessing validity (Accuracy) four different methods i.e. re-abstraction and re-coding, percentage morphologically verified cases (MV%), percentage of death certificate only (DCO%) cases and percentage of cases with other and unspecified sites (O and U%) were used. For assessing completeness of coverage, different semi-quantitative methods were used. Results: Re-abstraction done for 10% of the total incident cases yielded overall percentage agreement of 97.4%, 97.2%, 95.4% and 94.9% for PBCR Chandigarh, SAS Nagar, Mansa and Sangrur respectively. MV% was found to be 96.3% for PBCR Chandigarh, 92.8% for PBCR SAS Nagar , 89.3% for PBCR Mansa and 82.9% for PBCR Sangrur. Percentage of DCO cases and O and U cases were 1.4% and 2.8% for PBCR Chandigarh, 3.9% and 5.3% for SAS Nagar, 6.4% and 16.4% for Mansa and 6.3% and 8.3% for Sangrur. Completeness assessed through the various methods showed good level of completeness at PBCR Chandigarh and SAS Nagar and somewhat lower but acceptable level of completeness at PBCR Mansa and Sangrur. Conclusions: All the four PBCRs are comparable internationally. PBCR Chandigarh and SAS Nagar, predominantly urban registries, have higher accuracy of their data and good completeness levels as compared to predominantly rural registries of Mansa and Sangrur. Cancer estimates given by all the four registries are reliable and data from these registries can be utilized for planning cancer prevention and control activities in the region.
The argument for a combined cancer consortium research data base
Cancer, 1985
Epidemiologic data that were obtained through the SEER registry (Surveillance Epidemiology End Results Program) are presented. Survival statistics for five major brain tumor types in childhood are presented for the years 1968 through 1979. Further survival statistics are compared in patients treated in community hospitals versu university hospitals. The lack of uniform reporting, absence of pathologic conformation, and limited number of patients seen throughout the country are emphasized. There is a need for the establishment of a data base composed of the member institutions of the childhood cancer consortiums. This data base would address questions of patterns of failure, benefits of surgical and clinical staging, and the value of a new putative pathologic grading system. Additionally, the opportunity to collect these patients should permit identification of long-term treatment effects. Identification of early morbidity may lead to modification of treatment programs. A data base containing treatment and diagnostic parameters would allow significant cross-correlations and would lead to the design of future studies that are based upon accurate data.
Outcome Evaluation of a State Comprehensive Cancer Control Plan
Journal of Public Health Management and Practice, 2013
ScD, MSPH r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r r Context: Rigorous outcome evaluation is essential to monitor progress toward achieving goals and objectives in comprehensive cancer control plans (CCCPs). Objective: This report describes a systematic approach for an initial outcome evaluation of a CCCP. Design: Using the Centers for Disease Control and Prevention evaluation framework, the evaluation focused on (1) organizing cancer plan objectives by anatomic site and risk factors, (2) rating each according to clarity and data availability, (3) the subsequent evaluation of clearly stated objectives with available outcome data, and (4) mapping allocation of implementation grants for local cancer control back to the CCCP objectives. Setting: South Carolina. Main Outcome Measures: Evaluation outcomes included (1) a detailed account of CCCP objectives by topic area, (2) a systematic rating of level of clarity and availability of data to measure CCCP objectives, (3) a systematic assessment of attainment of measurable objectives, and (4) a summary of how cancer control grant funds were allocated and mapped to CCCP objectives. Results: A system was developed to evaluate the extent to which cancer plan objectives were measurable as written with data available for monitoring. Twenty-one of 64 objectives (33%) in the South Carolina's CCCP were measurable as written with data available. Of the 21 clear and measurable objectives, 38% were not met, 38% were partially met, and 24% were met. Grant allocations were summarized across CCCP chapters, revealing that prevention and early detection were the most heavily funded CCCP areas. Conclusions: This evaluation highlights a practical, rigorous approach for generating evidence required to monitor progress, enhance planning efforts, and recommend improvements to a CCCP.
BMC Health Services Research
Background Clinical registries facilitate medical research by providing ‘real data’. In the past decade, an increasing number of disease registry systems (DRS) have been initiated in Iran. Here, we assessed the quality control (QC) of the data recorded in the DRS established by Shahid Beheshti University of Medical Sciences in Tehran, the capital city of Iran, in 2021. Methods The present study was conducted in two consecutive qualitative and quantitative phases and employed a mixed-method design. A checklist containing 23 questions was developed based on a consensus reached following several panel group discussions, whose face content and construct validities were confirmed. Cronbach’s alpha was calculated to verify the tool’s internal consistency. Overall, the QC of 49 DRS was assessed in six dimensions, including completeness, timeliness, accessibility, validity, comparability, and interpretability. The seventy percent of the mean score was considered a cut-point for desirable do...
Journal of Empirical Research on Human Research Ethics, 2019
Institutional review boards (IRBs) have been criticized for overstepping their authority by requiring research protocols to meet requirements that go beyond regulatory approval criteria. The youngest National Cancer Institute (NCI) central IRB (CIRB), the Cancer Prevention and Control (CPC) CIRB, was studied with the NCI Stipulation Analysis Review Tool (StART), which categorized 1,049 stipulations in 51 determination letters covering 30 approved protocols. NCI StART reduced the potential for subjective uncertainty in assessing the wide range of content in the stipulations. The tool determined the board functioned in accordance with federal mandates, with 80% of rendered stipulations aligning with IRB approval criteria. A complementary article provides background data and findings from the first 3 years’ experience of the CPC CIRB.