Integrated AD trial data from multiple sources and stakeholders

Abstract

AbstractThere is every reason to cheer recent advances is treatments and diagnostics for Alzheimer’s and other dementias, but enormous need remains, and progress is still too slow. An important way to accelerate new discoveries is through sharing of the vast amounts of relevant data, especially the data collect from human research participants. There is consensus among many researchers, clinicians, patients, and governments that data sharing accelerates science by increasing the utility of data. This allows for new analysis, meta‐analysis, and replication, inspiring new ideas and approaches.There are, however, challenges to data sharing. These include accessible and affordable infrastructure, tools, and resources to support data curation, sharing, and analysis. There also needs to be more incentives – to move away from siloed efforts and towards global collaboration.The Alzheimer’s Disease Data Initiative (ADDI) is dedicated to data sharing by advancing solutions to these challenges. The AD Workbench provides researchers with the infrastructure to share data and to discover data within a secure, cloud‐based environment.For data contributors, supports and resources are available to assist with harmonization and curation of data. There are also options available regarding permissioned access, whether the data is simply accessed on the AD Workbench or through federated sharing. For researchers, the AD Workbench offers compute resources, data analysis tools, and other resources to help advance their work.To both support work on the AD Workbench and to foster community and collaboration, AD Connect offers resource libraries, discussion forums, and other helpful information. We know that meaningful ADRD advances will not be made by any one person or organization. Bringing researchers together, to engage, interact, and inspire each other will help us move closer to fundamentally transforming ADRD research.