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Journal of Pediatric Surgery Oct 2023Registries are important in rare disease research. The Anorectal Malformation Network (ARM-Net) registry is a well-established European patient registry collecting...
BACKGROUND
Registries are important in rare disease research. The Anorectal Malformation Network (ARM-Net) registry is a well-established European patient registry collecting demographic, clinical, and functional outcome data. We assessed the quality of this registry through review of the structure, data elements, collected data, and user experience.
MATERIAL AND METHODS
Design and data elements were assessed for completeness, consistency, usefulness, accuracy, validity, and comparability. An intra- and inter-user variability study was conducted through monitoring and re-registration of patients. User experience was assessed via a questionnaire on registration, design of registry, and satisfaction.
RESULTS
We evaluated 119 data elements, of which 107 were utilized and comprised 42 string and 65 numeric elements. A minority (37.0%) of the 2278 included records had complete data, though this improved to 83.5% when follow-up elements were excluded. Intra-observer variability demonstrated 11.7% incongruence, while inter-observer variability was 14.7%. Users were predominantly pediatric surgeons and typically registered patients within 11-30 min. Users did not experience any significant difficulties with data entry and were generally satisfied with the registry, but preferred more longitudinal data and patient-reported outcomes.
CONCLUSIONS
The ARM-Net registry presents one of the largest ARM cohorts. Although its collected data are valuable, they are susceptible to error and user variability. Continuous evaluations are required to maintain relevant and high-quality data and to achieve long-term sustainability. With the recommendations resulting from this study, we call for rare disease patient registries to take example and aim to continuously improve their data quality to enhance the small, but impactful, field of rare disease research.
LEVEL OF EVIDENCE
V.
Topics: Child; Humans; Rare Diseases; Registries; Data Accuracy; Surveys and Questionnaires; Anorectal Malformations; Data Collection
PubMed: 37045715
DOI: 10.1016/j.jpedsurg.2023.02.049 -
ANZ Journal of Surgery Oct 2023Multiple cancer registries in Australia are used to track the incidence of cancer and the outcomes of their treatment. These registries can be broadly classed into a few... (Review)
Review
BACKGROUND
Multiple cancer registries in Australia are used to track the incidence of cancer and the outcomes of their treatment. These registries can be broadly classed into a few types with an increasing number of registries comes a greater potential for collaboration and linkage. This article aims to critically review cancer registry types in Australia and evaluate the Australian Cancer registry landscape to identify these areas.
METHODS
A systematic review was performed through MEDLINE, EMBASE and Cochrane Library, updated to September 2022 using a predefined search strategy. Inclusion criteria were those that only analysed Australian and/or New Zealand based cancer registries, appraised the utility of cancer outcomes and/or incidence registries, and explored the utility of linked databases using cancer outcomes and/or incidence registries. The grey literature was searched for all operating cancer registries in Australia. Details of registry infrastructure was extracted for analysis and comparison.
RESULTS
Three thousand two hundred and sixteen articles identified from the three databases. Twelve met the inclusion criteria. Twenty-eight registries were identified using the grey literature. Strengths and weaknesses of Cancer Outcome Registries(COR) and Cancer Incidence Registries(CIR) were compared. Data linkage between registries or with other healthcare databases show great benefits in improving evidence for cancer research but are challenging to implement. Both registry types utilize differing modes of administration, influencing their accuracy and completeness.
CONCLUSION
Outcome registries provide detailed data but their weakness lies in incomplete data coverage. Incidence registries record a large dataset which contain inaccuracies. Improving coverage of quality outcome registries, and quality assurance of data in incidence registries is required to ensure collection of accurate, meaningful data. Areas for collaboration identified included establishment of defined definitions and outcomes, data linkage between registry types or with healthcare databases, and collaboration in logistical planning to improve clinical utility of cancer registries.
Topics: Humans; Incidence; Australia; Neoplasms; Registries; Delivery of Health Care
PubMed: 37668278
DOI: 10.1111/ans.18678 -
The Canadian Journal of Cardiology Jul 2023
Topics: Humans; Cardiovascular Diseases; Data Collection; Reference Standards
PubMed: 37178760
DOI: 10.1016/j.cjca.2023.05.003 -
The Journal of Hand Surgery Jun 2024Touching Hands is an American Society for Surgery of the Hand program that provides hand surgeries to the world's underserved communities. The purpose of this study was...
PURPOSE
Touching Hands is an American Society for Surgery of the Hand program that provides hand surgeries to the world's underserved communities. The purpose of this study was to develop and implement a systematic data collection method for Touching Hands to assess patient outcomes, volunteer impact, alleviated disease burden, and cost-effectiveness.
METHODS
Research electronic data capture (REDCap) was used as the secure software platform to facilitate data collection. The Quick Disabilities of the Arm, Shoulder and Hand questionnaire was used to assess pre-and postoperative patient-reported outcomes. The Maslach Burnout Inventory-Human Services (Medical Personnel) survey was administered to volunteers before and after the mission to measure impact on volunteers. Case information was collected to calculate disability-adjusted life years and cost-effectiveness.
RESULTS
The data collection system was implemented in some capacity in 4 domestic and 3 international mission sites during 2020 and 2021.
CONCLUSIONS
Substantial limitations exist for the implementation of a systematic data collection framework for Touching Hands and warrant further modification and optimization.
CLINICAL RELEVANCE
A REDCap database can be used for standardized and centralized patient and volunteer data collection for Touching Hands missions.
Topics: Humans; Pilot Projects; Hand; Data Collection; Surveys and Questionnaires; Medical Missions; Cost-Benefit Analysis; Volunteers
PubMed: 36253199
DOI: 10.1016/j.jhsa.2022.08.020 -
Community Dental Health Aug 2023The life grid is a retrospective interview-based tool used to enhance recall of past events. This scoping review examines the use of the life grid in oral health... (Review)
Review
AIM
The life grid is a retrospective interview-based tool used to enhance recall of past events. This scoping review examines the use of the life grid in oral health research and its applications.
METHODS
Using the Joanna Briggs Institute framework, Medline (Ovid), CINAHL, PsycInfo, ERIC, MedEdPortal, Web of Science Core Collection, ProQuest, and Google Scholar were searched with "life grid" and "oral" as initial keywords. Then, two reviewers screened the records independently. Studies published until April 21, 2022, were added, regardless of language. Data were summarised narratively and in a comprehensive table focused on seven main areas.
RESULTS
A total of 22 studies were included from 724 initially identified records. The life grid was used in different forms, in various qualitative, longitudinal, and cross-sectional studies with participants of different ages. Eight studies used the life grid at the beginning of the interview, four during the process, and one at the end. The ability to reduce recall bias, increase data reliability, establish rapport with participants, and ensure information accuracy were among the most commonly cited benefits of using the life grid in oral health research, particularly in oral cancer research.
CONCLUSIONS
The life grid is a flexible tool used in a variety of structures and applications in oral health research. Positive impacts have been reported by both researchers and participants. This review highlights the potential of the life grid as a data collection and interview tool in oral health research and dental education.
Topics: Humans; Cross-Sectional Studies; Oral Health; Reproducibility of Results; Retrospective Studies; Data Collection
PubMed: 37655484
DOI: 10.1922/CDH_00088Salehi08 -
Primary Health Care Research &... Jul 2023Clinical research provides evidence to underpin and inform advancements in the quality of care, services and treatments. Primary care research enables the general... (Review)
Review
BACKGROUND
Clinical research provides evidence to underpin and inform advancements in the quality of care, services and treatments. Primary care research enables the general patient population access and opportunities to engage in research studies. Nurses play an integral role in supporting the delivery of primary care research, but there is limited understanding of nurses' experiences of this role and how they can be supported to facilitate the delivery of research.
AIM
To explore the experiences of nurses delivering research studies in primary care settings.
METHODS
We identified studies published between 2002 and June 2021 from key electronic databases. A two-level inclusion/exclusion and arbitration process was conducted based on study selection criteria. Data extraction and quality appraisal were performed simultaneously. Data were analysed in the form of a narrative synthesis.
FINDINGS
The key themes identified included: (1) what nurses value about primary care research and their motivations for study engagement, (2) the role of nurses in research, (3) working with research teams, (4) study training, (5) eligibility screening, data collection and study documentation, (6) nurse/participant dynamic, (7) gatekeeping, (8) relationships with colleagues and impact on recruitment, (9) time constraints and workload demands, and (10) health and safety.
CONCLUSIONS
Nurses are integral to the delivery of research studies in primary care settings. The review highlights the importance of good communication by study teams, timely and study-specific training, and support from colleagues to enable nurses to effectively deliver research in primary care.
Topics: Humans; Communication; Data Collection; Databases, Factual; Primary Health Care; Nurses
PubMed: 37435653
DOI: 10.1017/S146342362300035X -
Behavioural Brain Research Aug 2023Behavioral studies are commonly used as a standard procedure to evaluate anxiety and depression in animal models. Recently, different methods have been developed to...
Behavioral studies are commonly used as a standard procedure to evaluate anxiety and depression in animal models. Recently, different methods have been developed to improve data collection and analysis of the behavioral tests. Currently available methods, including manual analysis and commercially available products, are either time-consuming or costly. The objective of this study was to improve the collection and analysis of behavioral test data in animal models by developing an image processing program. Eleven behavioral parameters were evaluated by three different methods, including (i) manual detection, (ii) commercially available TopScan software (CleverSys Inc, USA), and (iii) In-housed-developed Advanced Move Tracker (AMT) software. Results obtained from different methods were compared to validate the accuracy and efficiency of AMT. Results showed that AMT software provides highly accurate and reliable data analysis compared to other methods. Less than 5% tolerance was reported between results obtained from AMT compared to TopScan. In addition, the analysis processing time was remarkably reduced (68.3%) by using AMT compared to manual detection. Overall, the findings confirmed that AMT is an efficient program for automated data analysis, significantly enhancing research outcomes through accurate analysis of behavioral test data in animal models.
Topics: Animals; Behavior Rating Scale; Software; Image Processing, Computer-Assisted; Data Collection; Models, Animal
PubMed: 37321312
DOI: 10.1016/j.bbr.2023.114544 -
Journal of Biomedical Informatics Sep 2023Adverse outcome pathway (AOP) networks are versatile tools in toxicology and risk assessment that capture and visualize mechanisms driving toxicity originating from...
Optimization of an adverse outcome pathway network on chemical-induced cholestasis using an artificial intelligence-assisted data collection and confidence level quantification approach.
BACKGROUND
Adverse outcome pathway (AOP) networks are versatile tools in toxicology and risk assessment that capture and visualize mechanisms driving toxicity originating from various data sources. They share a common structure consisting of a set of molecular initiating events and key events, connected by key event relationships, leading to the actual adverse outcome. AOP networks are to be considered living documents that should be frequently updated by feeding in new data. Such iterative optimization exercises are typically done manually, which not only is a time-consuming effort, but also bears the risk of overlooking critical data. The present study introduces a novel approach for AOP network optimization of a previously published AOP network on chemical-induced cholestasis using artificial intelligence to facilitate automated data collection followed by subsequent quantitative confidence assessment of molecular initiating events, key events, and key event relationships.
METHODS
Artificial intelligence-assisted data collection was performed by means of the free web platform Sysrev. Confidence levels of the tailored Bradford-Hill criteria were quantified for the purpose of weight-of-evidence assessment of the optimized AOP network. Scores were calculated for biological plausibility, empirical evidence, and essentiality, and were integrated into a total key event relationship confidence value. The optimized AOP network was visualized using Cytoscape with the node size representing the incidence of the key event and the edge size indicating the total confidence in the key event relationship.
RESULTS
This resulted in the identification of 38 and 135 unique key events and key event relationships, respectively. Transporter changes was the key event with the highest incidence, and formed the most confident key event relationship with the adverse outcome, cholestasis. Other important key events present in the AOP network include: nuclear receptor changes, intracellular bile acid accumulation, bile acid synthesis changes, oxidative stress, inflammation and apoptosis.
CONCLUSIONS
This process led to the creation of an extensively informative AOP network focused on chemical-induced cholestasis. This optimized AOP network may serve as a mechanistic compass for the development of a battery of in vitro assays to reliably predict chemical-induced cholestatic injury.
Topics: Humans; Adverse Outcome Pathways; Artificial Intelligence; Cholestasis; Risk Assessment; Data Collection
PubMed: 37541407
DOI: 10.1016/j.jbi.2023.104465 -
Neurocritical Care Dec 2023Electroencephalography (EEG) has long been recognized as an important tool in the investigation of disorders of consciousness (DoC). From inspection of the raw EEG to...
BACKGROUND
Electroencephalography (EEG) has long been recognized as an important tool in the investigation of disorders of consciousness (DoC). From inspection of the raw EEG to the implementation of quantitative EEG, and more recently in the use of perturbed EEG, it is paramount to providing accurate diagnostic and prognostic information in the care of patients with DoC. However, a nomenclature for variables that establishes a convention for naming, defining, and structuring data for clinical research variables currently is lacking. As such, the Neurocritical Care Society's Curing Coma Campaign convened nine working groups composed of experts in the field to construct common data elements (CDEs) to provide recommendations for DoC, with the main goal of facilitating data collection and standardization of reporting. This article summarizes the recommendations of the electrophysiology DoC working group.
METHODS
After assessing previously published pertinent CDEs, we developed new CDEs and categorized them into "disease core," "basic," "supplemental," and "exploratory." Key EEG design elements, defined as concepts that pertained to a methodological parameter relevant to the acquisition, processing, or analysis of data, were also included but were not classified as CDEs.
RESULTS
After identifying existing pertinent CDEs and developing novel CDEs for electrophysiology in DoC, variables were organized into a framework based on the two primary categories of resting state EEG and perturbed EEG. Using this categorical framework, two case report forms were generated by the working group.
CONCLUSIONS
Adherence to the recommendations outlined by the electrophysiology working group in the resting state EEG and perturbed EEG case report forms will facilitate data collection and sharing in DoC research on an international level. In turn, this will allow for more informed and reliable comparison of results across studies, facilitating further advancement in the realm of DoC research.
Topics: Humans; Common Data Elements; Biomedical Research; Consciousness Disorders; Data Collection; Electrophysiology
PubMed: 37606737
DOI: 10.1007/s12028-023-01795-1 -
Social Studies of Science Jun 2024Data are versatile objects that can travel across contexts. While data's travels have been widely discussed, little attention has been paid to the sites from where and...
Data are versatile objects that can travel across contexts. While data's travels have been widely discussed, little attention has been paid to the sites from where and to which data flow. Drawing upon ethnographic fieldwork in two connected data-intensive laboratories and the concept of domestication, we explore what it takes to bring data 'home' into the laboratory. As data come and dwell in the home, they are made to follow rituals, and as a result, data are reshaped and form ties with the laboratory and its practitioners. We identify four main ways of domesticating data. First, through about the data's origins, data practitioners draw the boundaries of their laboratory. Second, through , staff transform samples into digital data that can travel well while ruling what data can be let into the home. Third, through , data practitioners become familiar with their data and at the same time imprint the data, thus making them belong to their home. Finally, through , staff turn data into a resource for knowledge production. Through the lens of domestication, we see the data economy as a collection of homes connected by flows, and it is because data are tamed and attached to homes that they become valuable knowledge tools. Such domestication practices also have broad implications for staff, who in the process of 'homing' data, come to belong to the laboratory. To conclude, we reflect on what these domestication processes-which silence unusual behaviours in the data-mean for the knowledge produced in data-intensive research.
Topics: Anthropology, Cultural; Data Collection
PubMed: 38006306
DOI: 10.1177/03063127231212506