RESUMO
Data sharing is increasingly an expectation in health research as part of a general move toward more open sciences. In the United States, in particular, the implementation of the 2023 National Institutes of Health Data Management and Sharing Policy has made it clear that qualitative studies are not exempt from this data sharing requirement. Recognizing this trend, the Palliative Care Research Cooperative Group (PCRC) realized the value of creating a de-identified qualitative data repository to complement its existing de-identified quantitative data repository. The PCRC Data Informatics and Statistics Core leadership partnered with the Qualitative Data Repository (QDR) to establish the first serious illness and palliative care qualitative data repository in the U.S. We describe the processes used to develop this repository, called the PCRC-QDR, as well as our outreach and education among the palliative care researcher community, which led to the first ten projects to share the data in the new repository. Specifically, we discuss how we co-designed the PCRC-QDR and created tailored guidelines for depositing and sharing qualitative data depending on the original research context, establishing uniform expectations for key components of relevant documentation, and the use of suitable access controls for sensitive data. We also describe how PCRC was able to leverage its existing community to recruit and guide early depositors and outline lessons learned in evaluating the experience. This work advances the establishment of best practices in qualitative data sharing.
Assuntos
Disseminação de Informação , Cuidados Paliativos , Pesquisa Qualitativa , Humanos , Estados Unidos , Pesquisa Biomédica , Bases de Dados FactuaisRESUMO
PURPOSE: This study has been focused on assessing the Open Science scenario of cancer research during the period 2011-2021, in terms of the derived scientific publications and raw data dissemination. METHODS: A cancer search equation was executed in the Science Citation Index-Expanded, collecting the papers signed by at least one Spanish institution. The same search strategy was performed in the Data Citation Index to describe dataset diffusion. RESULTS: 50,822 papers were recovered, 71% of which belong to first and second quartile journals. 59% of the articles were published in Open Access (OA) journals. The Open Access model and international collaboration positively conditioned the number of citations received. Among the most productive journals stood out Plos One, Cancers, and Clinical and Translational Oncology. 2693 genomics, proteomics and metabolomics datasets were retrieved, being Gene Expression Omnibus the favoured repository. CONCLUSIONS: There has been an increase in oncology publications in Open Access. Most were published in first quartile journals and received higher citations than non-Open Access articles, as well as when oncological investigation was performed between international research teams, being relevant in the context of Open Science. Genetic repositories have been the preferred for sharing oncology datasets. Further investigation of research and data sharing in oncology is needed, supported by stronger Open Science policies, to achieve better data sharing practices among three scientific main pillars: researchers, publishers, and scientific organizations.
Assuntos
Pesquisa Biomédica , Disseminação de Informação , Neoplasias , Humanos , Neoplasias/genética , Oncologia , Bibliometria , Publicações Periódicas como Assunto/estatística & dados numéricos , Acesso à Informação , Espanha , Publicação de Acesso AbertoRESUMO
OBJECTIVES: This study evaluates the endorsement of open science practices by dental journals. MATERIALS AND METHODS: This was a meta-research study that included journals listed in the 2021 Journal Citation Reports under Dentistry. A comprehensive evaluation was performed by accessing journal websites to ascertain the availability of publicly accessible instructions to authors in Portuguese, English, or Spanish. A researcher extracted information from the "Instructions for Authors" section, encompassing the journal's impact factor, mention of any reporting guidelines, details on data sharing, acceptance of articles in preprint format, and information regarding study protocol registration. Descriptive data analysis was conducted using the Stata 14.0 program, and an Open Science Score (OSS) (ranging from 0 to 100 %) was calculated for each journal by considering five open science practices. Pearson's correlation test was conducted to determine the relationship between the OSS score and journal impact factor. RESULTS: Ninety journals were included in the study. Most journals (70 %) indicated the mandatory use of reporting guidelines, while 60 % recommended data sharing. Conversely, 46.7 % did not provide information on study protocol registration, and 44.4 % stipulated them as mandatory for authors. Regarding preprints, 50 % of the journals did not provide any information, but 46.7 % confirmed their acceptance. The mean OSS was 52.9 % (standard deviation 26.2). There was a weak correlation (Pearson's correlation coefficient of 0.221) between the journal impact factor and OSS (P-value=0.036). CONCLUSION: This study found varying degrees of endorsement of open science practices among dental journals. CLINICAL SIGNIFICANCE: Dental practitioners rely on high-quality, evidence-based research for informed decision-making. By assessing the endorsement of open science practices, our study contributes to improving the quality and reliability of dental research, ultimately enhancing the evidence base for clinical practice.
Assuntos
Pesquisa em Odontologia , Publicação de Acesso Aberto , Publicações Periódicas como Assunto , Humanos , Odontologia , Guias como Assunto , Disseminação de Informação , Fator de Impacto de Revistas , EditoraçãoRESUMO
BACKGROUND: Evidence comparing different exercise modalities in individuals undergoing hemodialysis remains incipient. Our aim was to conduct a systematic review and network meta-analysis of randomized clinical trials to compare and synthesize the efficacy of five different intradialytic exercise modalities and home-based training in this population. DESIGN, SETTING, PARTICIPANTS, AND MEASUREMENTS: Studies were searched in PubMed/MEDLINE, Cochrane Library, Embase, Cinahl, and Scopus from their inception to 19 September 2022. We used traditional random-effects models and Bayesian network meta-analysis models. The risk of bias was assessed using the RoB v.2.0 tool, and the assessment of confidence in the results through the Confidence in Network Meta-Analysis (CINeMA) tool. RESULTS: Seventy-eight studies involving 3326 participants were included. Our network meta-analysis showed that combined training was the intervention with the best performance to increase VO2 peak [mean difference (MD) = 3.94 ml/kg/min; 95% credible interval (CrI), 2.38 to 5.76] and to reduce diastolic blood pressure (MD = -5.19 mmHg; 95%CrI, -9.35 to -0.96) compared to the usual care group. Inspiratory muscle training was the intervention that most improved the 6-minute walk test distance (MD = 70.97 m; 95%CrI, 18.09 to 129.87). C-reactive protein decreased in resistance training (MD = -2.6 mg/l; 95%CrI, -4.97 to -0.33) and aerobic training (MD = -1.4 mg/l; 95%CrI, -3.15 to -0.06). Kt/V improved in aerobic training (MD = 0.11; 95%CrI, 0.02 to 0.18), and SF-36 physical functioning outcomes improved in resistance training (MD = 10.66 points; 95%Crl, 1.91 to 20.22). No intradialytic exercise modality was superior to others or comparable with home-based training in improving the evaluated outcomes. Subgroup analysis revealed that exercise interventions >12 weeks improved functional capacity more than interventions ≤12 weeks, and that combined training reduces diastolic blood pressure only after 12 weeks of follow-up. Furthermore, our results suggest that moderate or moderate-to-vigorous intensity training leads to more pronounced improvements in functional capacity, whereas mild or mild-to-moderate intensity training does not have the same effect. In this review, most of the included studies were assessed as having some concern, which resulted in a low to very low level of confidence in the overall findings. CONCLUSIONS: Both intradialytic training and home-based training can promote benefits for individuals undergoing hemodialysis, with no evidence of the superiority of either training modality over the other.
Assuntos
Terapia por Exercício , Diálise Renal , Humanos , Metanálise em Rede , Teorema de Bayes , Ensaios Clínicos Controlados Aleatórios como Assunto , Terapia por Exercício/métodos , Diálise Renal/efeitos adversos , Qualidade de VidaRESUMO
This study aimed to assess the frequency of receiving requested data for a systematic review and associated factors. We contacted the authors of studies in need of additional data via e-mail. The primary outcome was the success in receiving the requested data according to the time until receipt. We estimated the hazard ratio (HR) and 95% confidence interval (CI) for success in each variable compared to the reference category, with weighted Cox proportional hazards models using Stata (version 14.2). Out of 164 studies contacted, 110 replied (67.1%), and 51 sent requested data (31.1%). Median time to receive a response or withdraw contact was 36.0 days (interquartile range: 17.5, 142.5). Higher success ratio was observed in studies published as scientific papers (HR = 3.01, 95% CI = [1.18, 7.70]), in more than one publication (HR = 2.00, 95% CI = [1.14, 3.51]), and contacted by personal e-mail (HR = 2.85, 95% CI = [1.34, 6.07]). Three or more contact attempts led to lower success ratio (HR = 0.19, 95% CI = [0.11, 0.35]) than one or two. Requesting data for a systematic review was time-consuming and effective in three out of ten studies. Fewer contacts were more successful than insisting.
Assuntos
Disseminação de Informação , Revisões Sistemáticas como Assunto , Estudos Transversais , HumanosRESUMO
Introducción: Compartir datos es una práctica que beneficia y nutre a la ciencia abierta. La reutilización de datos sin procesar puede aportar nuevos resultados de investigación y otorga un segundo uso a los conjuntos de datos creados con otro fin, que además pueden servir como respaldo de los resultados de investigación. Objetivo: Exponer y actualizar los aspectos más importantes relacionados con el uso compartido de datos como parte del proceso de investigación. Material y Métodos: Se realizó un estudio bibliográfico que analiza y compila los principales aspectos que debe conocer un investigador que pretende compartir los datos de resultantes de sus investigaciones. Se empleó el análisis de contenido y el análisis documental clásico para la selección de documentos relevantes al estudio de la temática analizada. Desarrollo: Se establece una guía de repositorios de datos y buscadores de repositorios, donde se explican sus principales características. Se explica la importancia del papel de las revistas en el proceso de compartir datos de investigación y las tendencias internacionales de revistas científicas, así como los niveles de acceso a los set de datos de las investigaciones. Se abordan las ventajas de la aplicación de data sharing y su importancia. Conclusiones: Se ofrecen recomendaciones que se deben considerar para elegir repositorios cuando se pretende alojar datos de investigación(AU)
Introduction: Data sharing is a practice that benefits and nurtures open science movement. The reuse of raw data can provide new research results and give a second use to data sets created for another purpose, which can also serve as a support for research results. Objective: To present and update the most important aspects related to data sharing as part of the research process. Material and Methods: This is a bibliographic study that analyzes and compiles the main aspects that a researcher who intends to share the data resulting from his research should know. Content analysis and classic documentary analysis were used for the selection of documents relevant to the study on the subject analyzed. Development: A guide to data repositories and repository search engines is established, and its main characteristics are explained. The importance of the role of journals in the process of sharing research data, international trends in scientific journals, and the levels of access to research data sets, are explained. The advantages of the application of data sharing and its importance are discussed. Conclusions: Recommendations, which should be considered when choosing repositories to host research data, are offered(AU)
Assuntos
Humanos , Organização Mundial da Saúde , Disseminação de Informação , Acesso à Informação/éticaRESUMO
Aim: We explore attitudes from the public in Costa Rica regarding willingness to donate DNA data for research. Materials & methods: A total of 224 Costa Rican individuals answered the anonymous online survey 'Your DNA, Your Say'. It covers attitudes toward DNA and medical data donation, trust in research professionals and concerns about consequences of reidentification. Results & conclusion: Most individuals (89%) are willing to donate their information for research purposes. When confronted with different potential uses of their data, participants are significantly less likely to donate data to for-profit researchers (34% willingness to donate). The most frequently cited concerns regarding donation of genetic data relate to possible discrimination by health/life insurance companies and employers. For the participants in the survey, the most trusted professionals are their own medical doctor and nonprofit researchers from their country. This is the first study regarding attitudes toward genetic data donation in Costa Rica.