Data use under the NIH GWAS data sharing policy and future directions.
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ABSTRACT:
SUBMITTER: Paltoo DN
PROVIDER: S-EPMC4182942 | biostudies-literature | 2014 Sep
REPOSITORIES: biostudies-literature
Publications
Data use under the NIH GWAS data sharing policy and future directions.
Paltoo Dina N DN Rodriguez Laura Lyman LL Feolo Michael M Gillanders Elizabeth E Ramos Erin M EM Rutter Joni L JL Sherry Stephen S Wang Vivian Ota VO Bailey Alice A Baker Rebecca R Caulder Mark M Harris Emily L EL Langlais Kristofor K Leeds Hilary H Luetkemeier Erin E Paine Taunton T Roomian Tamar T Tryka Kimberly K Patterson Amy A Green Eric D ED
Nature genetics 20140901 9
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Project description:As librarians are generally advocates of open access and data sharing, it is a bit surprising that peer-reviewed journals in the field of librarianship have been slow to adopt data sharing policies. Starting October 1, 2019, the is taking a step forward and implementing a firm data sharing policy to increase the rigor and reproducibility of published research, enable data reuse, and promote open science. This editorial explains the data sharing policy, describes how compliance with the policy will fit into the journal’s workflow, and provides further guidance for preparing for data sharing.
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Project description:Introduction In January, the National Institutes of Health (NIH) implemented a Data Management and Sharing Policy aiming to leverage data collected during NIH-funded research. The COVID-19 pandemic illustrated that this practice is equally vital for augmenting patient research. In addition, data sharing acts as a necessary safeguard against the introduction of analytical biases. While the pandemic provided an opportunity to curtail critical research issues such as reproducibility and validity through data sharing, this did not materialise in practice and became an example of 'Open Data in Appearance Only' (ODIAO). Here, we define ODIAO as the intent of data sharing without the occurrence of actual data sharing (eg, material or digital data transfers).Objective Propose a framework that states the main risks associated with data sharing, systematically present risk mitigation strategies and provide examples through a healthcare lens.Methods This framework was informed by critical aspects of both the Open Data Institute and the NIH's 2023 Data Management and Sharing Policy plan guidelines.Results Through our examination of legal, technical, reputational and commercial categories, we find barriers to data sharing ranging from misinterpretation of General Data Privacy Rule to lack of technical personnel able to execute large data transfers. From this, we deduce that at numerous touchpoints, data sharing is presently too disincentivised to become the norm.Conclusion In order to move towards Open Data, we propose the creation of mechanisms for incentivisation, beginning with recentring data sharing on patient benefits, additional clauses in grant requirements and committees to encourage adherence to data reporting practices.
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Project description:BackgroundRecent advances in understanding molecular and synaptic mechanisms of intellectual disabilities (ID) in fragile X syndrome (FXS) and Down syndrome (DS) through animal models have led to targeted controlled trials with pharmacological agents designed to normalize these underlying mechanisms and improve clinical outcomes. However, several human clinical trials have failed to demonstrate efficacy of these targeted treatments to improve surrogate behavioral endpoints. Because the ultimate index of disease modification in these disorders is amelioration of ID, the validation of cognitive measures for tracking treatment response is essential. Here, we present preliminary research to validate the National Institutes of Health Toolbox Cognitive Battery (NIH-TCB) for ID.MethodsWe completed three pilot studies of patients with FXS (total n = 63; mean age 19.3 ± 8.3 years, mean mental age 5.3 ± 1.6 years), DS (n = 47; mean age 16.1 ± 6.2, mean mental age 5.4 ± 2.0), and idiopathic ID (IID; n = 16; mean age 16.1 ± 5.0, mean mental age 6.6 ± 2.3) measuring processing speed, executive function, episodic memory, word/letter reading, receptive vocabulary, and working memory using the web-based NIH-TB-CB, addressing feasibility, test-retest reliability, construct validity, ecological validity, and syndrome differences and profiles.ResultsFeasibility was good to excellent (≥80 % of participants with valid scores) for above mental age 4 years for all tests except list sorting (working memory). Test-retest stability was good to excellent, and convergent validity was similar to or better than results obtained from typically developing children in the normal sample for executive function and language measures. Examination of ecological validity revealed moderate to very strong correlations between the NIH-TCB composite and adaptive behavior and full-scale IQ measures. Syndrome/group comparisons demonstrated significant deficits for the FXS and DS groups relative to IID on attention and inhibitory control, a significant reading weakness for FXS, and a receptive vocabulary weakness for DS.ConclusionsThe NIH-TCB has potential for assessing important dimensions of cognition in persons with ID, and several tests may be useful for tracking response to intervention. However, more extensive psychometric studies, evaluation of the NIH-TCB's sensitivity to change, both developmentally and in the context of treatment, and perhaps establishing links to brain function in these populations, are required to determine the true utility of the battery as a set of outcome measures.
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Project description:PurposeTo identify co-produced multi-stakeholder perspectives important for successful widespread physically active learning (PAL) adoption and implementation.MethodsA total of 35 stakeholders (policymakers n = 9; commercial education sector, n = 8; teachers, n = 3; researchers, n = 15) attended a design thinking PAL workshop. Participants formed 5 multi-disciplinary groups with at least 1 representative from each stakeholder group. Each group, facilitated by a researcher, undertook 2 tasks: (1) using Post-it Notes, the following question was answered: within the school day, what are the opportunities for learning combined with movement? and (2) structured as a washing-line task, the following question was answered: how can we establish PAL as the norm? All discussions were audio-recorded and transcribed. Inductive analyses were conducted by 4 authors. After the analyses were complete, the main themes and subthemes were assigned to 4 predetermined categories: (1) PAL design and implementation, (2) priorities for practice, (3) priorities for policy, and (4) priorities for research.ResultsThe following were the main themes for PAL implementation: opportunities for PAL within the school day, delivery environments, learning approaches, and the intensity of PAL. The main themes for the priorities for practice included teacher confidence and competence, resources to support delivery, and community of practice. The main themes for the policy for priorities included self-governance, the Office for Standards in Education, Children's Services, and Skill, policy investment in initial teacher training, and curriculum reform. The main themes for the research priorities included establishing a strong evidence base, school-based PAL implementation, and a whole-systems approach.ConclusionThe present study is the first to identify PAL implementation factors using a combined multi-stakeholder perspective. To achieve wider PAL adoption and implementation, future interventions should be evidence based and address implementation factors at the classroom level (e.g., approaches and delivery environments), school level (e.g., communities of practice), and policy level (e.g., initial teacher training).
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Project description:BackgroundAs genomic science moves beyond government-academic collaborations into routine healthcare operations, nursing's holistic philosophy and evidence-based practice approach positions nurses as leaders to advance genomics and precision health care in routine patient care.PurposeTo examine the status of and identify gaps for U.S. genomic nursing health care policy and precision health clinical practice implementation.MethodsWe conducted a scoping review and policy priorities analysis to clarify key genomic policy concepts and definitions, and to examine trends and utilization of health care quality benchmarking used in precision health.FindingsGenomic nursing health care policy is an emerging area. Educating and training the nursing workforce to achieve full dissemination and integration of precision health into clinical practice remains an ongoing challenge. Use of health care quality measurement principles and federal benchmarking performance evaluation criteria for precision health implementation are not developed.DiscussionNine recommendations were formed with calls to action across nursing practice workforce and education, nursing research, and health care policy arenas.ConclusionsTo advance genomic nursing health care policy, it is imperative to develop genomic performance measurement tools for clinicians, purchasers, regulators and policymakers and to adequately prepare the nursing workforce.
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Project description:As researchers, we are advised to share our data to improve transparency and increase the reproducibility of experiments. Simultaneously, making data freely accessible can raise ethical questions regarding the participants' privacy. We first outline the challenges regarding "open data" for researchers in light of the GDPR. Then, we turn to the impact of an open-access data sharing policy on the participants: could the participants' knowledge about the future use of the data alter the data itself? Through two pre-registered studies (N = 193, collected on campus and N = 543, online participation), we investigate whether disclosing that anonymized data will be publicly shared vs. not shared influences a potential participants' intention to take part in the study. Using both frequentist and Bayesian analysis, we conclude towards an absence of effect of a difference in data sharing policy on scores in the Big Five questionnaire and social desirability, careless response behavior, and results in the anchoring paradigm. In the second study, a lexicometric analysis of participants' reactions to openly sharing data reveals a readiness to share data and support transparency under the condition of preserved anonymity. Hence, if anonymity can be ensured, there seems to be no methodological or ethical drawback in transparent and open data sharing policies for many psychological studies.
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