Conectar
This study aimed to develop a core outcome set (COS) for trials evaluating the effects of complementary therapies in people with multiple sclerosis (pwMS). We sought to identify the outcomes most relevant to pwMS, their relatives and friends, healthcare professionals and researchers and to propose these for inclusion in future trials.
A participatory international research project using a mixed-method approach with qualitative and quantitative methods. The study included a scoping review and a national survey in Switzerland to identify candidate outcomes, followed by an international COS survey to rate the importance of these outcomes. The final phases involved two consensus meetings to refine and finalise the COS.
Data were sourced from the published literature and input from international stakeholders.
pwMS and other relevant stakeholders, including their relatives and friends, healthcare professionals and researchers.
A total of 770 individuals participated in the international COS survey of 39 candidate outcomes (662 pwMS, 27 relatives/friends, 58 healthcare professionals and 23 researchers). According to the survey results, 13 outcomes were added to the COS, 5 were excluded and 21 were classified as ‘no consensus’. 13 individuals (six pwMS, one pwMS’s friend, three healthcare professionals and three researchers) attended the first consensus meeting. Following the voting on the outcomes without consensus, seven outcomes were added to the COS, four were excluded and 10 outcomes were still classified as ‘no consensus’. The six members of the stakeholders advisory board (one pwMS, four healthcare professionals and two researchers) attended the second consensus meeting to define the final COS. Nine additional outcomes were included in the COS. Sexual problems, an outcome previously excluded, were also added. In total, 30 outcomes were included in the final COS.
We have developed the first COS for future trials of complementary therapies for pwMS. The use of this COS will promote that future research in complementary therapies is relevant for pwMS and other stakeholders involved in MS care. Future COS research should integrate diverse geographical regions, where perspectives and access to complementary therapies may vary.
by Ahmad Sofi-Mahmudi, Erfan Shamsoddin, Sahar Khademioore, Yeganeh Khazaei, Amin Vahdati, Marcos Roberto Tovani-Palone
BackgroundOrofacial clefts are the most common craniofacial anomalies that include a variety of conditions affecting the lips and oral cavity. They remain a significant global public health challenge. Despite this, the quality of care for orofacial clefts has not been investigated at global and country levels.
ObjectiveWe aimed to measure the quality-of-care index (QCI) for orofacial clefts worldwide.
MethodsWe used the 2019 Global Burden of Disease data to create a multifactorial index (QCI) to assess orofacial clefts globally and nationally. By utilizing data on incidence, prevalence, years of life lost, and years lived with disability, we defined four ratios to indirectly reflect the quality of healthcare. Subsequently, we conducted a principal component analysis to identify the most critical variables that could account for the observed variability. The outcome of this analysis was defined as the QCI for orofacial clefts. Following this, we tracked the QCI trends among males and females worldwide across various regions and countries, considering factors such as the socio-demographic index and World Bank classifications.
ResultsGlobally, the QCI for orofacial clefts exhibited a consistent upward trend from 1990 to 2019 (66.4 to 90.2) overall and for females (82.9 to 94.3) and males (72.8 to 93.6). In the year 2019, the top five countries with the highest QCI scores were as follows: Norway (QCI = 99.9), Ireland (99.4), France (99.4), Germany (99.3), the Netherlands (99.3), and Malta (99.3). Conversely, the five countries with the lowest QCI scores on a global scale in 2019 were Somalia (59.1), Niger (67.6), Burkina Faso (72.6), Ethiopia (73.0), and Mali (74.4). Gender difference showed a converging trend from 1990 to 2019 (optimal gender disparity ratio (GDR): 123 vs. 163 countries), and the GDR showed a move toward optimization (between 0.95 and 1.05) in the better and worse parts of the world.
ConclusionDespite the positive results regarding the QCI for orofacial clefts worldwide, some countries showed a slight negative trend.
by Ahmad Sofi-Mahmudi, Eero Raittio, Yeganeh Khazaei, Javed Ashraf, Falk Schwendicke, Sergio E. Uribe, David Moher
BackgroundAccording to the FAIR principles (Findable, Accessible, Interoperable, and Reusable), scientific research data should be findable, accessible, interoperable, and reusable. The COVID-19 pandemic has led to massive research activities and an unprecedented number of topical publications in a short time. However, no evaluation has assessed whether this COVID-19-related research data has complied with FAIR principles (or FAIRness).
ObjectiveOur objective was to investigate the availability of open data in COVID-19-related research and to assess compliance with FAIRness.
MethodsWe conducted a comprehensive search and retrieved all open-access articles related to COVID-19 from journals indexed in PubMed, available in the Europe PubMed Central database, published from January 2020 through June 2023, using the metareadr package. Using rtransparent, a validated automated tool, we identified articles with links to their raw data hosted in a public repository. We then screened the link and included those repositories that included data specifically for their pertaining paper. Subsequently, we automatically assessed the adherence of the repositories to the FAIR principles using FAIRsFAIR Research Data Object Assessment Service (F-UJI) and rfuji package. The FAIR scores ranged from 1–22 and had four components. We reported descriptive analysis for each article type, journal category, and repository. We used linear regression models to find the most influential factors on the FAIRness of data.
Results5,700 URLs were included in the final analysis, sharing their data in a general-purpose repository. The mean (standard deviation, SD) level of compliance with FAIR metrics was 9.4 (4.88). The percentages of moderate or advanced compliance were as follows: Findability: 100.0%, Accessibility: 21.5%, Interoperability: 46.7%, and Reusability: 61.3%. The overall and component-wise monthly trends were consistent over the follow-up. Reviews (9.80, SD = 5.06, n = 160), articles in dental journals (13.67, SD = 3.51, n = 3) and Harvard Dataverse (15.79, SD = 3.65, n = 244) had the highest mean FAIRness scores, whereas letters (7.83, SD = 4.30, n = 55), articles in neuroscience journals (8.16, SD = 3.73, n = 63), and those deposited in GitHub (4.50, SD = 0.13, n = 2,152) showed the lowest scores. Regression models showed that the repository was the most influential factor on FAIRness scores (R2 = 0.809).
ConclusionThis paper underscored the potential for improvement across all facets of FAIR principles, specifically emphasizing Interoperability and Reusability in the data shared within general repositories during the COVID-19 pandemic.
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