Virtual Stakeholder Workshop: Gaps and Opportunities for Real-World Data
On May 4, 2022, NIA is convening an exploratory workshop to learn what gaps exist in current real-world data (RWD) infrastructure and what opportunities lie in expanding availability of RWD sources for aging and Alzheimer’s disease and related dementia research.
Specifically, researchers will highlight gaps and opportunities to:
- Securely access health data (e.g., electronic medical records, claims, genetics, etc.) from private data providers and academic institutions to gain insight on Alzheimer’s and related dementias disease trajectory
- Identify opportunities for developing a platform for an Alzheimer’s and related dementias digital cohort that serves as a diverse recruitment pool (i.e., Recruitment as a Service) for clinical trials across NIA extramural divisions (e.g., drug trials, prevention trials, dementia care interventions)
- Analyze sensitive RWD through secure cloud workspaces while protecting privacy of study participants
- Collaborate in partnerships with health care and community health providers to enable rapid drug trials to launch embedded pragmatic clinical trials for improving care for older adults with multimorbidity, including dementia
Stakeholders will focus on identifying and prioritizing gaps and opportunities that exist in current RWD infrastructure that require further exploration to support aging and Alzheimer’s and related dementias research.