Gathering patient and caregiver experiences to improve Alzheimer's care
Core B: Primary Data Collection and Partner Engagement
This project gathers lived experiences from people with Alzheimer's, their caregivers, and care teams to help shape better care and policies.
Quick facts
| Grant type | P01 program project |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Brown University NIH-funded |
| Lab location | 1 site (Providence, United States) |
| Project ID | NIH-11191382 on NIH RePORTER |
What this research studies
You would be invited to share real-world experiences through interviews, case studies, or meetings with advisory panels that include patients, caregivers, clinicians, and payers. The team centrally collects and combines these first-hand accounts to understand how care and policies affect outcomes. Findings are shared with partner groups to help translate what is learned into practical changes in care and systems. Participation may include in-person or remote conversations and involvement with a partner advisory panel.
Who could benefit from this research
Good fit: People living with Alzheimer's disease or related dementias, their family or informal caregivers, and clinicians or payer representatives involved in their care are likely candidates to participate.
Not a fit: Those seeking an experimental drug or direct clinical treatment benefit are unlikely to receive medical benefit from participating in this qualitative, policy-focused work.
Why it matters
Potential benefit: If successful, the work could lead to changes in care practices and policies that improve the day-to-day experiences and outcomes of people living with Alzheimer's and related dementias.
How similar studies have performed: Similar qualitative studies and advisory-panel approaches have previously influenced care delivery and policy decisions, though such system-level changes usually occur gradually.
Where this research is happening
Providence, United States
- Brown University — Providence, United States (Active)
Researchers
- Principal investigator: Gadbois, Emily Aurora — Brown University
- Study coordinator: Gadbois, Emily Aurora
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page below.