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Feasibility of an International Multiple Sclerosis Rehabilitation Data Repository: Perceived Challenges and Motivators for Sharing Data.

ABSTRACT: Background:Multiple sclerosis (MS) rehabilitation evidence is limited due to methodological factors, which may be addressed by a data repository. We describe the perceived challenges of, motivators for, interest in participating in, and key features of an international MS rehabilitation data repository. Methods:A multimethod sequential investigation was performed with the results of two focus groups, using nominal group technique, and study aims informing the development of an online questionnaire. Percentage agreement and key quotations illustrated questionnaire findings. Subgroup comparisons were made between clinicians and researchers and between participants in North America and Europe. Results:Rehabilitation professionals from 25 countries participated (focus groups: n = 21; questionnaire: n = 166). The top ten challenges (C) and motivators (M) identified by the focus groups were database control/management (C); ethical/legal concerns (C); data quality (C); time, effort, and cost (C); best practice (M); uniformity (C); sustainability (C); deeper analysis (M); collaboration (M); and identifying research needs (M). Percentage agreement with questionnaire statements regarding challenges to, motivators for, interest in, and key features of a successful repository was at least 80%, 85%, 72%, and 83%, respectively, across each group of statements. Questionnaire subgroup analysis revealed a few differences (P < .05), including that clinicians more strongly identified with improving best practice as a motivator. Conclusions:Findings support clinician and researcher interest in and potential for success of an international MS rehabilitation data repository if prioritized challenges and motivators are addressed and key features are included.

SUBMITTER: Bradford EH

PROVIDER: S-EPMC5825982 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:Cross-border disease transmission is a key challenge for prevention and control of outbreaks. Variation in surveillance structure and national guidelines used in different countries can affect their data quality and the timeliness of outbreak reports. This study aimed to evaluate timeliness and data quality of national outbreak reporting for four countries in the Mekong Basin Disease Surveillance network (MBDS). Data on disease outbreaks occurring from 2010 to 2015 were obtained from the national disease surveillance reports of Cambodia, Lao PDR, Myanmar, and Vietnam. Data included total cases, geographical information, and dates at different timeline milestones in the outbreak detection process. Nine diseases or syndromes with public health importance were selected for the analysis including: dengue, food poisoning & diarrhea, severe diarrhea, diphtheria, measles, H5N1 influenza, H1N1 influenza, rabies, and pertussis. Overall, 2,087 outbreaks were reported from the four countries. The number of outbreaks and number of cases per outbreak varied across countries and diseases, depending in part on the outbreak definition used in each country. Dates on index onset, report, and response were >95% complete in all countries, while laboratory confirmation dates were 10%-100% incomplete in most countries. Inconsistent and out of range date data were observed in 1%-5% of records. The overall timeliness of outbreak report, response, and public communication was within 1-15 days, depending on countries and diseases. Diarrhea and severe diarrhea outbreaks showed the most rapid time to report and response, whereas diseases such as rabies, pertussis and diphtheria required a longer time to report and respond. The hierarchical structure of the reporting system, data collection method, and country's resources could affect the data quality and timeliness of the national outbreak reporting system. Differences in data quality and timeliness of outbreak reporting system among member countries should be considered when planning data sharing strategies within a regional network.

Project description:ImportanceThe benefits of responsible sharing of individual-participant data (IPD) from clinical studies are well recognized, but stakeholders often disagree on how to align those benefits with privacy risks, costs, and incentives for clinical trialists and sponsors. The International Committee of Medical Journal Editors (ICMJE) required a data sharing statement (DSS) from submissions reporting clinical trials effective July 1, 2018. The required DSSs provide a window into current data sharing rates, practices, and norms among trialists and sponsors.ObjectiveTo evaluate the implementation of the ICMJE DSS requirement in 3 leading medical journals: JAMA, Lancet, and New England Journal of Medicine (NEJM).Design, setting, and participantsThis is a cross-sectional study of clinical trial reports published as articles in JAMA, Lancet, and NEJM between July 1, 2018, and April 4, 2020. Articles not eligible for DSS, including observational studies and letters or correspondence, were excluded. A MEDLINE/PubMed search identified 487 eligible clinical trials in JAMA (112 trials), Lancet (147 trials), and NEJM (228 trials). Two reviewers evaluated each of the 487 articles independently.ExposurePublication of clinical trial reports in an ICMJE medical journal requiring a DSS.Main outcomes and measuresThe primary outcomes of the study were declared data availability and actual data availability in repositories. Other captured outcomes were data type, access, and conditions and reasons for data availability or unavailability. Associations with funding sources were examined.ResultsA total of 334 of 487 articles (68.6%; 95% CI, 64%-73%) declared data sharing, with nonindustry NIH-funded trials exhibiting the highest rates of declared data sharing (89%; 95% CI, 80%-98%) and industry-funded trials the lowest (61%; 95% CI, 54%-68%). However, only 2 IPD sets (0.6%; 95% CI, 0.0%-1.5%) were actually deidentified and publicly available as of April 10, 2020. The remaining were supposedly accessible via request to authors (143 of 334 articles [42.8%]), repository (89 of 334 articles [26.6%]), and company (78 of 334 articles [23.4%]). Among the 89 articles declaring that IPD would be stored in repositories, only 17 (19.1%) deposited data, mostly because of embargo and regulatory approval. Embargo was set in 47.3% of data-sharing articles (158 of 334), and in half of them the period exceeded 1 year or was unspecified.Conclusions and relevanceMost trials published in JAMA, Lancet, and NEJM after the implementation of the ICMJE policy declared their intent to make clinical data available. However, a wide gap between declared and actual data sharing exists. To improve transparency and data reuse, journals should promote the use of unique pointers to data set location and standardized choices for embargo periods and access requirements.

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Feasibility of an International Multiple Sclerosis Rehabilitation Data Repository: Perceived Challenges and Motivators for Sharing Data.

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