PGDA Core E: Statistical Data Enclave Core Access to data is imperative for successful research. However, this must be balanced by the need for data to created, stored and used in a way that respects the rights of individuals and confidentiality of the research data they provide. The Statistical Data Enclave Core will have three main aims. Firstly, it will provide a central statistical data enclave for restricted access data from other aging studies that can be accessed by PGDA affiliates and other researchers. Secondly, it will help PGDA researchers to make their data widely available by providing an infrastructure for producing both public-ijse and restricted datasets as well as mechanisms for allowing other researchers access to this data. Thirdly, it will ensure data security and compliance with human subjects requirements for all its datasets. We will also encourage, through pilot projects, research into the development of new identity-masking strategies that maintain both the value of the data and the statistical analyses. This core will contribute to:
PGDA Aim 5 We will promote research on aging by providing the infrastructure to produce public-use and restricted datasets through a secure data enclave.
The specific aims of the Statistical Data Enclave Core are: Core E Aim 1: To provide access to a secure data enclave containing a range of restricted datasets for aging research and create a resource-rich space that encourages research and innovation. Core E Aim 2: To ensure data sharing security and compliance. We are committed to managing safely and responsibly confidential data in compliance with data use agreements and pertinent human subjects practices. Core E Aim 3: To house and publish original public-use and restricted use datasets based on aging research at PGDA to be available to the research community.
Access to restricted data that preserves individual confidentiality is a key element in much health-related research. Making the data available beyond the initial researchers who collected it can lead to a large volume of new research that will complement and validate the initial research of the data collectors. This leverages research spending and can produce improved health outcomes by leading to policy-relevant research findings.
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