Identifying barriers to optimizing data sharing and accelerate discovery in Alzheimer’s disease and related dementia research

这是阿尔茨海默病和相关痴呆症（ADRD）研究利用数据共享和 加速治疗发现。数据共享对于推进研究很重要，因为它支持大数据 更能代表总体的集合，提高了检测可推广贡献者的能力， 疾病共享数据可以让调查人员在彼此工作的基础上提高效率， 冗余数据生成。由于这些原因，美国国立卫生研究院致力于促进 自1997年以来，数据共享加速了生物科学研究。不过，我们的初步数据显示 在ADRD中，个人，机构和系统层面的障碍阻碍了最佳数据共享。此外，委员会认为， 机构、出版商和资助者的政策可能相互不兼容， 阻止调查人员共享数据。努力成倍扩大ADRD研究成果 通过数据库和研究联盟将无法达到治疗发现的目标，如果研究人员 不能或不会共享数据。为了解决这一风险，并确定有效的干预措施，以提高患病率， 数据共享的质量，目前在ADRD研究者共享实践方面的知识差距， 必须关闭对政策的认识和对障碍的导航。我们建议进一步探讨这些问题， 挑衅性的初步研究结果，收集可推广的数据，以更好地了解ADRD研究人员的 数据共享责任的实践和观念。这些数据将有助于制定干预措施 考虑到与进行ADRD研究相关的独特挑战， 该领域独特的亚文化。我们的目标是为ADRD研究人员提供促进数据共享的工具 并促进遵守数据共享政策，包括NIH数据管理和共享政策 （2023年生效）。我们将与ADRD调查人员一起进行调查，以更好地了解数据的普遍性 共享和保留做法，并明确数据共享的障碍。经过调查，我们将 对一部分受试者进行深入访谈，收集并分析他们对障碍的叙述性描述 数据共享以及他们如何克服这些障碍。这将提供丰富的了解调查人员的独特的 经验最后，我们将比较研究者报告的经验与各种政策，指导ADRD 科学实践。这将包括来自期刊、学术/研究中心、知识库、财团的政策， 等人我们将提出干预措施的建议，以减少数据共享的障碍。这 研究对于促进最佳数据共享行为至关重要，这些行为是推进治疗研究所需的， ADRD。

It is a pivotal time for Alzheimer’s disease and related dementias (ADRD) research to harness data sharing and accelerate therapeutic discovery. Data sharing is important to advance research because it supports large data sets that are more representative of the population, increasing the ability to detect generalizable contributors to disease. Sharing data increases efficiency by allowing investigators to build upon each other’s work and prevents redundant data generation. For of these reasons, the National Institutes of Health has committed to promoting data sharing to accelerate research in the biosciences since 1997. Nevertheless, our preliminary data indicate that in ADRD individual, institutional, and system-level barriers are impeding optimal data sharing. Furthermore, the policies of institutions, publishers, and funders may be incompatible with one another, preventing or discouraging investigators from sharing data. Efforts to exponentially expand ADRD research achievement through data repositories and research consortia will fail to meet therapeutic discovery goals if investigators cannot or will not share data. To address this risk and identify effective interventions to improve the prevalence and quality of data sharing, current gaps in knowledge regarding ADRD investigators’ sharing practices, perceptions of policies, and navigation of barriers must be closed. We propose to further explore these provocative preliminary findings, collecting generalizable data to better understand ADRD investigators’ practices and perceptions of data sharing responsibilities. Such data would support development of interventions that mitigate barriers considering unique challenges associated with conducting ADRD research and the distinctive subculture of the field. Our goal is to provide ADRD investigators with tools that promote data sharing and facilitate adherence to data sharing policies, including the NIH Data Management and Sharing Policy (effective 2023). We will conduct surveys with ADRD investigators to better understand the prevalence of data sharing and withholding practices and gain clarity about barriers to data sharing. Following surveys, we will conduct in-depth interviews with a subset of subjects to collect and analyze their narrative descriptions of barriers to data sharing and how they navigate such barriers. This will provide rich understanding of investigators’ unique experiences. Finally, we will compare investigators’ reported experiences with various policies that guide ADRD scientific practices. This will include policies from journals, academic/research centers, repositories, consortia, and others. We will make recommendations of interventions which might mitigate barriers to data sharing. This study is critical to promoting optimal data sharing behaviors that are needed to advance therapeutic research in ADRD.