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1.
Rheumatology (Oxford) ; 60(1): 353-358, 2021 01 05.
Artigo em Inglês | MEDLINE | ID: mdl-32789449

RESUMO

OBJECTIVES: As the coronavirus disease 2019 pandemic developed there was a paucity of data relevant to people living with rheumatic disease. This led to the development of a global, online registry to meet these information needs. This manuscript provides a detailed description of the coronavirus disease 2019 Global Rheumatology Alliance registry development, governance structure, and data collection, and insights into new ways of rapidly establishing global research collaborations to meet urgent research needs. METHODS: We use previously published recommendations for best practices for registry implementation and describe the development of the Global Rheumatology Alliance registry in terms of these steps. We identify how and why these steps were adapted or modified. In Phase 1 of registry development, the purpose of the registry and key stakeholders were identified on online platforms, Twitter and Slack. Phase 2 consisted of protocol and data collection form development, team building and the implementation of governance and policies. RESULTS: All key steps of the registry development best practices framework were met, though with the need for adaptation in some areas. Outputs of the registry, two months after initial conception, are also described. CONCLUSION: The Global Rheumatology Alliance registry will provide highly useful, timely data to inform clinical care and identify further research priorities for people with rheumatic disease with coronavirus disease 2019. The formation of an international team, easily able to function in online environments and resulting in rapid deployment of a registry is a model that can be adapted for other disease states and future global collaborations.


Assuntos
Pesquisa Biomédica/organização & administração , Coleta de Dados/métodos , Internet , Sistema de Registros/normas , Doenças Reumáticas , Reumatologia , Pesquisa Biomédica/métodos , Humanos , Ciência da Implementação , Internacionalidade , Mídias Sociais , Participação dos Interessados
3.
Methodist Debakey Cardiovasc J ; 16(3): 205-211, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33133356

RESUMO

Cardiovascular registries play an integral role in providing real-world data on a number of cardiovascular conditions and allowing measurement of quality metrics across a large cohort of patients. Over the past 35 years, the number of cardiovascular registries has skyrocketed, and their use will only continue to grow as data on novel procedures and devices will need to be collected and analyzed. The American College of Cardiology and Society of Thoracic Surgeons Transcatheter Valve Therapy Registry is just one example of a modern registry that plays a crucial role in collecting data on patients undergoing transcatheter valvular procedures. Through public reporting registries, data can be shared on a hospital and provider level for many quality performance measures. There remains much work to be done on allowing automated data extraction from the electronic medical record directly into registries. No matter how sophisticated and complete a registry is, it can never overcome the problem of treatment selection bias that is inherent in observational data. This review discusses the growth, benefits, and limitations of national registries and their role in developing evidence for best clinical practice, measuring outcomes, providing feedback to clinicians, and improving quality of care.


Assuntos
Cardiologia/normas , Doenças Cardiovasculares/terapia , Avaliação de Processos e Resultados em Cuidados de Saúde/normas , Melhoria de Qualidade/normas , Indicadores de Qualidade em Assistência à Saúde/normas , Sistema de Registros/normas , Big Data , Doenças Cardiovasculares/diagnóstico , Humanos , Registros Públicos de Dados de Cuidados de Saúde , Resultado do Tratamento
4.
Med. clín (Ed. impr.) ; 155(7): 288-294, oct. 2020. graf, tab
Artigo em Espanhol | IBECS | ID: ibc-195876

RESUMO

INTRODUCCIÓN: Se ha descrito una mayor incidencia de neoplasias en los pacientes con infección por VIH en comparación con la población general. PACIENTES Y MÉTODOS: Estudio observacional retrospectivo de la población infectada por VIH en seguimiento en el Hospital Vall d'Hebron (Barcelona) entre 2009 y 2017. El objetivo de este estudio fue estimar la incidencia de neoplasias en estos pacientes con infección por VIH y su supervivencia. Se comparó la incidencia ajustada por edad y sexo en dicha población con la calculada por la Red Española de Registros de Cáncer (REDECAN) en 2015. RESULTADOS: Se incluyeron 2.773 pacientes (41.238 pacientes-año). Se diagnosticaron 211 cánceres en 182 pacientes. El 78,2% de las neoplasias fueron no definitorias de sida (NNDS). La tasa global de incidencia de cáncer fue 485 neoplasias por 100.000 pacientes-año. La mortalidad a 20años en pacientes con cáncer fue del 31,2%, y del 7,8% en pacientes sin cáncer. En varones, ajustada por edad, la incidencia de neoplasias fue mayor que en la población general (978,4 vs. 641 por 100.000 pacientes-año, p < 0,001); las más frecuentes fueron carcinomas de pulmón, sarcoma de Kaposi y linfoma no Hodgkin. En mujeres, la incidencia no fue mayor a la de la población general (340,6 vs. 404,7 por 100.000 pacientes-año, p = 0,27). Las neoplasias más frecuentes fueron carcinomas pulmonares, carcinomas de cabeza y cuello, cérvix y linfoma Hodgkin. CONCLUSIONES: Los varones con infección por VIH presentaron una incidencia significativamente mayor de cáncer que la población española del mismo sexo. Los carcinomas pulmonares fueron las NNDS más frecuentes


INTRODUCTION: A higher incidence of malignancies has been described in patients with HIV infection compared to the general population. PATIENTS AND METHODS: Observational retrospective study in patients with HIV infection followed up at the Vall d'Hebron University Hospital (Barcelona, Spain) between 2009 and 2017. The objective of this research was to estimate the incidence of malignancies in HIV patients and their surveillance. Age and sex-adjusted incidence was compared to the incidence calculated by the Spanish Cancer Registry network (REDECAN) in 2015. RESULTS: We included 2,773 patients (41,238 patients-year). Two hundred and eleven malignancies were diagnosed in 182 patients. Non-AIDS defining cancers accounted for 78.2% of the malignancies. The global incidence of cancer was 485 cases per 100,000 person-years. Twenty-year mortality rate was 31.2% in patients with cancer and 7.8% in patients without cancer. In men, adjusted for age, the incidence of malignancies was higher than the incidence in the general population (978.4 vs. 641 cases per 100,000 person-years, P<.001). The most common malignancies in men were lung cancer, Kaposi sarcoma and Hodgkin lymphoma. In women, the incidence of malignancies was not higher than in the general population (340.6 vs. 404.7 cases per 100,000 person-years, P=.27). The most common malignancies among women were lung cancer, head and neck cancer, cervical cancer and Hodgkin's lymphoma. CONCLUSIONS: Men with HIV infection showed a statistically significant higher incidence of malignancies compared to the general Spanish population. Lung cancer was the most common non-AIDS defining cancer


Assuntos
Humanos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Síndrome de Imunodeficiência Adquirida/epidemiologia , Soropositividade para HIV/epidemiologia , Neoplasias/epidemiologia , Espanha/epidemiologia , Estudos Retrospectivos , Sistema de Registros/normas , Neoplasias Pulmonares/epidemiologia , Neoplasias de Cabeça e Pescoço/epidemiologia , Linfoma não Hodgkin/epidemiologia , Taxa de Sobrevida , Intervalo Livre de Doença
5.
PLoS One ; 15(8): e0237656, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32866167

RESUMO

OBJECTIVE: Preterm birth is the primary driver of neonatal mortality worldwide, but it is defined by gestational age (GA) which is challenging to accurately assess in low-resource settings. In a commitment to reducing preterm birth while reinforcing and strengthening facility data sources, the East Africa Preterm Birth Initiative (PTBi-EA) chose eligibility criteria that combined GA and birth weight. This analysis evaluated the quality of the GA data as recorded in maternity registers in PTBi-EA study facilities and the strength of the PTBi-EA eligibility criteria. METHODS: We conducted a retrospective analysis of maternity register data from March-September 2016. GA data from 23 study facilities in Migori, Kenya and the Busoga Region of Uganda were evaluated for completeness (variable present), consistency (recorded versus calculated GA), and plausibility (falling within the 3rd and 97th birth weight percentiles for GA of the INTERGROWTH-21st Newborn Birth Weight Standards). Preterm birth rates were calculated using: 1) recorded GA <37 weeks, 2) recorded GA <37 weeks, excluding implausible GAs, 3) birth weight <2500g, and 4) PTBi-EA eligibility criteria of <2500g and between 2500g and 3000g if the recorded GA is <37 weeks. RESULTS: In both countries, GA was the least recorded variable in the maternity register (77.6%). Recorded and calculated GA (Kenya only) were consistent in 29.5% of births. Implausible GAs accounted for 11.7% of births. The four preterm birth rates were 1) 14.5%, 2) 10.6%, 3) 9.6%, 4) 13.4%. CONCLUSIONS: Maternity register GA data presented quality concerns in PTBi-EA study sites. The PTBi-EA eligibility criteria of <2500g and between 2500g and 3000g if the recorded GA is <37 weeks accommodated these concerns by using both birth weight and GA, balancing issues of accuracy and completeness with practical applicability.


Assuntos
Coleta de Dados/normas , Idade Gestacional , Serviços de Saúde Materna/organização & administração , Nascimento Prematuro/epidemiologia , Sistema de Registros/estatística & dados numéricos , Peso ao Nascer , Coleta de Dados/estatística & dados numéricos , Feminino , Humanos , Lactente , Mortalidade Infantil , Recém-Nascido de Peso Extremamente Baixo ao Nascer , Lactente Extremamente Prematuro , Recém-Nascido , Quênia/epidemiologia , Serviços de Saúde Materna/estatística & dados numéricos , Gravidez , Nascimento Prematuro/prevenção & controle , Melhoria de Qualidade , Sistema de Registros/normas , Reprodutibilidade dos Testes , Estudos Retrospectivos , Uganda/epidemiologia
6.
BMC Health Serv Res ; 20(1): 737, 2020 Aug 12.
Artigo em Inglês | MEDLINE | ID: mdl-32787852

RESUMO

BACKGROUND: Countries with the highest burden of maternal and newborn deaths and stillbirths often have little information on these deaths. Since over 81% of births worldwide now occur in facilities, using routine facility data could reduce this data gap. We assessed the availability, quality, and utility of routine labour and delivery ward register data in five hospitals in Bangladesh, Nepal, and Tanzania. This paper forms the baseline register assessment for the Every Newborn-Birth Indicators Research Tracking in Hospitals (EN-BIRTH) study. METHODS: We extracted 21 data elements from routine hospital labour ward registers, useful to calculate selected maternal and newborn health (MNH) indicators. The study sites were five public hospitals during a one-year period (2016-17). We measured 1) availability: completeness of data elements by register design, 2) data quality: implausibility, internal consistency, and heaping of birthweight and explored 3) utility by calculating selected MNH indicators using the available data. RESULTS: Data were extracted for 20,075 births. Register design was different between the five hospitals with 10-17 of the 21 selected MNH data elements available. More data were available for health outcomes than interventions. Nearly all available data elements were > 95% complete in four of the five hospitals and implausible values were rare. Data elements captured in specific columns were 85.2% highly complete compared to 25.0% captured in non-specific columns. Birthweight data were less complete for stillbirths than live births at two hospitals, and significant heaping was found in all sites, especially at 2500g and 3000g. All five hospitals recorded count data required to calculate impact indicators including; stillbirth rate, low birthweight rate, Caesarean section rate, and mortality rates. CONCLUSIONS: Data needed to calculate MNH indicators are mostly available and highly complete in EN-BIRTH study hospital routine labour ward registers in Bangladesh, Nepal and Tanzania. Register designs need to include interventions for coverage measurement. There is potential to improve data quality if Health Management Information Systems utilization with feedback loops can be strengthened. Routine health facility data could contribute to reduce the coverage and impact data gap around the time of birth.


Assuntos
Confiabilidade dos Dados , Salas de Parto , Sistema de Registros/normas , Bangladesh , Feminino , Humanos , Recém-Nascido , Nepal , Gravidez , Tanzânia
9.
Acta Obstet Gynecol Scand ; 99(12): 1618-1625, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32640493

RESUMO

INTRODUCTION: Medical quality registries have gained popularity as tools for monitoring the quality of medical treatments and they serve as data sources for research. The Norwegian Female Incontinence Registry (NFIR) was established in 1998 to monitor and improve the quality of surgery for women with stress and mixed urinary incontinence in Norway and to collect data for research. This study aimed to assess the completeness and accuracy of the Norwegian Female Incontinence Registry, and potential differences in data accuracy over time and according to surgical volume of the reporting hospitals. MATERIAL AND METHODS: A random selection of 300 women from a total of 20 610 operated for urinary incontinence between 1998 and 2016 reported to the Norwegian Female Incontinence Registry from 28 public hospitals were selected for validation. The database completeness was estimated for 2008-2017 by comparing surgical procedures registered both in the Norwegian Female Incontinence Registry and the Norwegian National Patient Registry. Historical data recorded in the Registry for 10 selected key variables were extracted and compared with the patients' individual medical records at the reporting hospitals as reference. The reviewers were blinded to the previously stored information. The intraclass correlation coefficient for continuous variables and Cohen's kappa for categorical variables were calculated. RESULTS: Primary source data on 285 of the 300 women selected from Norwegian Female Incontinence Registry were successfully retrieved. The completeness of the registry has increased from 61% in 2008 to 99% in 2017. The national coverage has increased from 12 reporting departments in 1998 to all 38 public departments performing female incontinence surgery in 2017. Excellent accuracy was found for both continuous variables (intraclass correlation coefficient >0.94) and categorical variables (Cohen's kappa >0.86). No differences in data accuracy were found comparing high-volume hospitals with low-volume hospitals, or when comparing data accuracy over time. CONCLUSIONS: The Norwegian Female Incontinence Registry is a reliable tool for quality assessment of incontinence surgery and research. The registry completeness has improved over time and now contains data on nearly all women undergoing incontinence surgery in Norway.


Assuntos
Hospitais Públicos , Administração dos Cuidados ao Paciente , Melhoria de Qualidade/organização & administração , Sistema de Registros , Incontinência Urinária , Confiabilidade dos Dados , Coleta de Dados/métodos , Bases de Dados Factuais , Feminino , Hospitais Públicos/normas , Hospitais Públicos/estatística & dados numéricos , Humanos , Pessoa de Meia-Idade , Noruega/epidemiologia , Administração dos Cuidados ao Paciente/normas , Administração dos Cuidados ao Paciente/estatística & dados numéricos , Distribuição Aleatória , Sistema de Registros/normas , Sistema de Registros/estatística & dados numéricos , Reprodutibilidade dos Testes , Incontinência Urinária/diagnóstico , Incontinência Urinária/epidemiologia , Incontinência Urinária/terapia
10.
JAMA Netw Open ; 3(7): e2011985, 2020 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-32729921

RESUMO

Importance: Researchers often analyze cancer registry data to assess for differences in survival among cancer treatments. However, the retrospective, nonrandomized design of these analyses raises questions about study validity. Objective: To examine the extent to which comparative effectiveness analyses using observational cancer registry data produce results concordant with those of randomized clinical trials. Design, Setting, and Participants: In this comparative effectiveness study, a total of 141 randomized clinical trials referenced in the National Comprehensive Cancer Network Clinical Practice Guidelines for 8 common solid tumor types were identified. Data on participants within the National Cancer Database (NCDB) diagnosed between 2004 and 2014, matching the eligibility criteria of the randomized clinical trial, were obtained. The present study was conducted from August 1, 2017, to September 10, 2019. The trials included 85 118 patients, and the corresponding NCDB analyses included 1 344 536 patients. Three Cox proportional hazards regression models were used to determine hazard ratios (HRs) for overall survival, including univariable, multivariable, and propensity score-adjusted models. Multivariable and propensity score analyses controlled for potential confounders, including demographic, comorbidity, clinical, treatment, and tumor-related variables. Main Outcomes and Measures: The main outcome was concordance between the results of randomized clinical trials and observational cancer registry data. Hazard ratios with an NCDB analysis were considered concordant if the NDCB HR fell within the 95% CI of the randomized clinical trial HR. An NCDB analysis was considered concordant if both the NCDB and clinical trial P values for survival were nonsignificant (P ≥ .05) or if they were both significant (P < .05) with survival favoring the same treatment arm in the NCDB and in the randomized clinical trial. Results: Analyses using the NCDB-produced HRs for survival were concordant with those of 141 randomized clinical trials in 79 univariable analyses (56%), 98 multivariable analyses (70%), and 90 propensity score models (64%). The NCDB analyses produced P values concordant with randomized clinical trials in 58 univariable analyses (41%), 65 multivariable analyses (46%), and 63 propensity score models (45%). No clinical trial characteristics were associated with concordance between NCDB analyses and randomized clinical trials, including disease site, type of clinical intervention, or severity of cancer. Conclusions and Relevance: The findings of this study suggest that comparative effectiveness research using cancer registry data often produces survival outcomes discordant with those of randomized clinical trial data. These findings may help provide context for clinicians and policy makers interpreting observational comparative effectiveness research in oncology.


Assuntos
Confiabilidade dos Dados , Neoplasias/classificação , Avaliação de Programas e Projetos de Saúde/normas , Sistema de Registros/normas , Adulto , Pesquisa Comparativa da Efetividade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/diagnóstico , Avaliação de Programas e Projetos de Saúde/estatística & dados numéricos , Pontuação de Propensão , Modelos de Riscos Proporcionais , Sistema de Registros/estatística & dados numéricos , Estudos Retrospectivos
14.
Neurology ; 95(3): e310-e319, 2020 07 21.
Artigo em Inglês | MEDLINE | ID: mdl-32591468

RESUMO

OBJECTIVE: To conduct a data quality improvement project to improve the quality measure data mapping and to measure key phrase logic in the Axon Registry.® METHODS: Prior validation analysis of the Axon Registry identified 2 main areas for remediation: methodology for mapping data from electronic health record (EHR) into the registry clinical data record (CDR) and key phrase logic for each measure. Practice groups participating in Axon Registry and 6 Axon Registry quality measures were selected for intervention. Mapping of measure elements and measure performances for each of the selected measures and practices were reviewed before intervention. The Data Accuracy Plan (DAP) was performed, and documentation data and visit data counts and data yield after intervention were calculated and analyzed. RESULTS: Documentation data and visit data counts and data yield increased for all 6 quality measures and all practices in the DAP. Increase in documentation data count ranged from 815 to 15,782 occurrences, while visit data count increase ranged from 519 to 16,383 visits. Average data yield range was 7.22% to 33.46% before intervention and increased to a range from 15.34% to 74.40% after intervention. CONCLUSION: There was substantial improvement in the accuracy of data extraction for quality measure elements after intervention to improve methodology for mapping EHR data into CDR and key phrase logic. Implementation of changes and continued review of data mapping and data dictionary are important to ensure accurate measure performance and to improve reliability and validity of Axon Registry data.


Assuntos
Axônios , Confiabilidade dos Dados , Coleta de Dados/normas , Registros Eletrônicos de Saúde/normas , Melhoria de Qualidade/normas , Sistema de Registros/normas , Coleta de Dados/métodos , Registros Eletrônicos de Saúde/estatística & dados numéricos , Humanos
16.
BMC Health Serv Res ; 20(1): 393, 2020 May 09.
Artigo em Inglês | MEDLINE | ID: mdl-32386523

RESUMO

BACKGROUND: The aim of this study was to demonstrate a novel method of assessing data quality for an orthopaedic registry and its effects on data quality metrics. METHODS: A quality controlled clinical patient registry was implemented, comprising six observational cohorts of shoulder and knee pathologies. Data collection procedures were co-developed with clinicians and administrative staff in accordance with the relevant dataset and organised into the registry database software. Quality metrics included completeness, consistency and validity. Data were extracted at scheduled intervals (3 months) and quality metrics reported to stakeholders of the registry. RESULTS: The first patient was enrolled in July 2017 and the data extracted for analysis over 4 quarters, with the last audit in August 2018 (N = 189). Auditing revealed registry completeness was 100% after registry deficiencies were addressed. However, cohort completeness was less accurate, ranging from 12 to 13% for height & weight to 90-100% for operative variables such as operating surgeon, consulting surgeon and hospital. Consistency and internal validation improved to 100% after issues in registry processes were rectified. CONCLUSIONS: A novel method to assess data quality in a clinical orthopaedic registry identified process shortfalls and improved data quality over time. Real-time communication, a comprehensive data framework and an integrated feedback loop were necessary to ensure adequate quality assurance. This model can be replicated in other registries and serve as a useful quality control tool to improve registry quality and ensure applicability of the data to aid clinical decisions, especially in newly implemented registries. TRIAL REGISTRATION: ACTRN12617001161314; registration date 8/08/2017. Retrospectively registered.


Assuntos
Confiabilidade dos Dados , Ortopedia , Sistema de Registros , Departamentos Hospitalares , Hospitais Públicos , Humanos , Sistema de Registros/normas
17.
BMC Psychiatry ; 20(1): 242, 2020 05 15.
Artigo em Inglês | MEDLINE | ID: mdl-32414335

RESUMO

BACKGROUND: Population-based administrative registers are often used for research purposes. However, their potential usefulness depends on the validity of the registered information. This study assessed the validity of the recorded codes for social anxiety disorder (SAD), also known as social phobia, in the Swedish National Patient Register (NPR). METHODS: The personal identification numbers of 300 randomly selected individuals with a diagnosis of SAD recorded in the NPR were obtained from the Swedish National Board of Health and Welfare. The medical files of these individuals were then requested from clinics nationally. A total of 117 files were received and two independent raters reviewed each file to assess the presence or absence of SAD, according to the definition of the International Classification of Diseases, Tenth Edition (ICD-10) and the diagnostic criteria of the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR). When disagreements between the two raters were found, a third rater reviewed the file to establish a best estimate diagnosis. Positive predictive values (PPV) and agreement between the two initial raters (using Cohen's kappa) were calculated. Additionally, raters completed the Clinical Global Impression - Severity (CGI-S) and the Global Assessment of Functioning (GAF) rating scales for each file. Inter-rater agreement for the CGI-S and the GAF was assessed using intraclass correlation coefficients (ICC). RESULTS: After exclusion of files not containing sufficient information, 95 files were included in the analyses. Of these, 77 files (81.05%) were considered to be 'true positive' cases (PPV = 0.81, 95% confidence interval = 0.72-0.88). Inter-rater agreement regarding the presence or absence of SAD was substantial (κ = 0.72). CGI-S and GAF scores indicated that patients were in the moderate range of severity and functional impairment. Inter-rater agreement for the CGI-S and the GAF was moderate to good (ICC = 0.72 and ICC = 0.82, respectively). CONCLUSIONS: The ICD-10 codes for SAD in the Swedish NPR are generally valid and reliable, but we recommend sensitivity analyses in future register-based studies to minimise the impact of potential diagnostic misclassification. Most patients were moderately severe and impaired, suggesting that results from register-based studies of SAD may be generalizable.


Assuntos
Fobia Social/diagnóstico , Sistema de Registros , Manual Diagnóstico e Estatístico de Transtornos Mentais , Humanos , Classificação Internacional de Doenças , Sistema de Registros/normas , Reprodutibilidade dos Testes , Sensibilidade e Especificidade , Suécia
18.
JAMA Netw Open ; 3(5): e205894, 2020 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-32463469

RESUMO

Importance: Language and indexing biases may exist among Chinese-sponsored randomized clinical trials (CS-RCTs). Such biases may threaten the validity of systematic reviews. Objective: To evaluate the existence of language and indexing biases among CS-RCTs on drug interventions. Design, Setting, and Participants: In this retrospective cohort study, eligible CS-RCTs were retrieved from trial registries, and bibliographic databases were searched to determine their publication status. Eligible CS-RCTs were for drug interventions conducted from January 1, 2008, to December 31, 2014. The search and analysis were conducted from March 1 to August 31, 2019. Primary trial registries were recognized by the World Health Organization and the Drug Clinical Trial Registry Platform sponsored by the China Food and Drug Administration. Exposures: Individual CS-RCTs with positive vs negative results (positive vs negative CS-RCTs). Main Outcomes and Measures: For assessing language bias, the main outcome was the language of the journal in which CS-RCTs were published (English vs Chinese). For indexing bias, the main outcome was the language of the bibliographic database where the CS-RCTs were indexed (English vs Chinese). Results: The search identified 891 eligible CS-RCTs. Four hundred seventy CS-RCTs were published by August 31, 2019, of which 368 (78.3%) were published in English. Among CS-RCTs registered in the Chinese Clinical Trial Registry (ChiCTR), positive CS-RCTs were 3.92 (95% CI, 2.20-7.00) times more likely to be published in English than negative CS-RCTs; among CS-RCTs in English-language registries, positive CS-RCTs were 3.22 (95% CI, 1.34-7.78) times more likely to be published in English than negative CS-RCTs. These findings suggest the existence of language bias. Among CS-RCTs registered in ChiCTR, positive CS-RCTs were 2.89 (95% CI, 1.55-5.40) times more likely to be indexed in English bibliographic databases than negative CS-RCTs; among CS-RCTs in English-language registries, positive CS-RCTs were 2.19 (95% CI, 0.82-5.82) times more likely to be indexed in English bibliographic databases than negative CS-RCTs. These findings support the existence of indexing bias. Conclusions and Relevance: This study suggests the existence of language and indexing biases among registered CS-RCTs on drug interventions. These biases may distort evidence synthesis toward more positive results of drug interventions.


Assuntos
Viés , Bases de Dados Bibliográficas/estatística & dados numéricos , Tratamento Farmacológico , Idioma , Ensaios Clínicos Controlados Aleatórios como Assunto/estatística & dados numéricos , Sistema de Registros/estatística & dados numéricos , China , Bases de Dados Bibliográficas/normas , Humanos , Resultados Negativos/estatística & dados numéricos , Publicações Periódicas como Assunto/estatística & dados numéricos , Viés de Publicação/estatística & dados numéricos , Sistema de Registros/normas , Estudos Retrospectivos
19.
BMC Med ; 18(1): 67, 2020 03 09.
Artigo em Inglês | MEDLINE | ID: mdl-32146901

RESUMO

BACKGROUND: Despite attempts to apply standard methods proven to work in high-income nations, nearly all civil registration and vital statistics (CRVS) systems in low- and middle-income countries are failing to achieve adequate levels of registration completeness or produce the high-quality vital statistics needed to support better health outcomes and monitor progress towards the 2030 Sustainable Development Goals. This suggests that, rather than simple technical issues, these countries are facing additional or different systemic challenges, including duplication of roles and responsibilities, inefficient methods of data collection, and a reluctance to change. APPLYING PROCESS MANAGEMENT: Process management is a valuable tool that strengthens the production of vital statistics by providing a visualisation of data flow from start to finish. It helps identify gaps and bottlenecks in the process, allowing stakeholders to work collaboratively to find solutions and target interventions. As part of the Bloomberg Philanthropies Data for Health Initiative at the University of Melbourne, 16 countries were supported in mapping the varied processes required in registering a birth or death. Comparative analysis exposed several limitations in the design of CRVS systems that hinder their performance - from 'passive' systems, to overly complex and fragmented system design, through to poor collaboration and duplication of efforts. CONCLUSIONS: The experiences from Myanmar, Papua New Guinea and Rwanda reported in this paper illustrate the benefits of process management to improve CRVS. While these three countries are at different stages of system development, each uniquely benefited. Process management is a useful tool for all CRVS systems, from the most rudimentary to the most developed. It can strengthen CRVS systems and improve the quality and completeness of vital statistics, resulting in more robust, reliable and timely vital statistics for health planning and better monitoring of the 2030 Sustainable Development Goal agenda.


Assuntos
Confiabilidade dos Dados , Estatísticas Vitais , Coleta de Dados , Humanos , Renda , Mianmar , Papua Nova Guiné , Sistema de Registros/normas , Ruanda , Desenvolvimento Sustentável
20.
Pediatr Cardiol ; 41(3): 443-458, 2020 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-32198591

RESUMO

Small study sizes are a limiting factor in assessing outcome measures in pediatric cardiology. It is even more difficult to assess the outcomes of congenital catheterizations where the sample sizes are even smaller, particularly on a individual institutional level. The creation of multicenter registries is a method by which investigators can pool data to better assess quality and outcome measures of these procedures. No registry is perfect with several being available today, each with its own strengths and weaknesses. In addition, there are a multitude of methods currently used to assess quality and outcomes from the data contained in these registries, each having its own limitations as well. Nonetheless, multicenter registrities remain one of the best available options to improve the quality of care for pediatric interventional cardiac catheterization. Below, we provide an overview of the current state of quality assessment/improvement in pediatric interventional cardiology including a review of the available registrities and the metrics used to measure quality of care and outcomes.


Assuntos
Cateterismo Cardíaco/normas , Cardiologia/normas , Sistema de Registros/normas , Criança , Cardiopatias Congênitas/cirurgia , Humanos , Avaliação de Resultados em Cuidados de Saúde/métodos , Melhoria de Qualidade , Risco Ajustado
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