Remote Data Enclave Core

Johns Hopkins University, Baltimore MD

Investigators

Linked publications & trials

Abstract

Abstract – Remote Data Enclave Core (RDEC) – Core F The Remote Data Enclave Core (RDEC) is the data lab HEADS Center with an objective over the next 6 years to facilitate access to and use of datasets central to ADRD research on HEADS-related themes. Facilitation is essential given that data has become more costly, restrictive, and fragmented in recent years. The goals of the RDEC during Years 1-5 were to create and sustain the HEADS Data Enclave and to build and maintain the data within that server environment. These goals were successful, with half (5/10) of HEADS pilot awards using RDEC since its launch. The HEADS Data Enclave now provides access to restricted data for 25 principal investigators, among whom 17 are early career. In the past year, NIA awarded HEADS investigators 2 ADRD-specific R01 grants leveraging the RDEC. In this HEADS Center renewal, we will build on these significant successes with a greatly expanded vision that responds to the rapidly evolving landscape for access to datasets that leverage administrative health insurance claims data. In particular, we respond to three dramatic changes: (1) CMS has indicated that it may no longer deliver physical data to universities, but rather require users to use the CMS Virtual Research Data Center (VRDC) exclusively; (2) NIA has established LINKAGE as the exclusive location for using CMS data linked to NIA-funded studies such as the HRS, NHATS/NSOC, and Long-Term Care (LTC) Data Cooperative; and (3) private companies are aggregating Electronic Health Records (EHR) across multiple health systems, linking these data to CMS claims and offering data access exclusively within their own data enclave environments. The RDEC will build on its successes and the changing landscape of data access with the following Aims: AIM 1: To sustain and expand the HEADS Data Enclave and the unified data warehouse of ADRD-relevant datasets available in that environment. AIM 2: To serve as data navigator for new HEADS-themed projects by providing the knowledge and services to ensure that HEADS Center Affiliates, including funded and prospective Pilot PIs, select the most appropriate datasets and data enclave for their research question/s and budget in the rapidly changing data landscape. AIM 3: To support ongoing needs of users of all RDEC resources including the HEADS Data Enclave, other supported data enclaves, and dataset user Working Groups central to HEADS- themed research. RDEC activities and resources will advance the HEADS Center and HEADS-themed data-driven research by not only maintaining excellence in privacy, security, and access on the HEADS Data Enclave, but by adapting its aims to integrate multiple data enclaves and offering services to reduce barriers to access and fostering shared knowledge.