Breaking down barriers to sharing Alzheimer's research data
Identifying barriers to optimizing data sharing and accelerate discovery in Alzheimer’s disease and related dementia research
This project looks at what's stopping researchers from sharing Alzheimer's data and how to fix it so discoveries for people living with dementia happen faster.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Georgia State University NIH-funded |
| Lab location | 1 site (Atlanta, United States) |
| Project ID | NIH-11237995 on NIH RePORTER |
What this research studies
Researchers will collect information from Alzheimer's investigators, data managers, institutions, journals, and funders using surveys, interviews, and policy reviews to map common obstacles to data sharing. They will analyze how institutional, publisher, and funder rules and technical practices prevent or discourage sharing. From these findings they will design practical interventions and recommendations to make sharing easier, more consistent, and fairer. The aim is to help scientists combine larger, more representative datasets that can accelerate progress in Alzheimer's and related dementias.
Who could benefit from this research
Good fit: This project seeks input mainly from Alzheimer's researchers, data managers, institutional policy-makers, and journal or funder representatives rather than patients.
Not a fit: People living with Alzheimer's or their caregivers generally would not receive direct treatment benefits or be enrolled in clinical interventions through this project.
Why it matters
Potential benefit: If successful, this work could make it faster and easier for scientists to combine and reuse Alzheimer's data, speeding discoveries that lead to better tests and treatments.
How similar studies have performed: Previous efforts have produced repositories and standards that improved sharing in some areas, but many cultural, technical, and policy barriers remain and require targeted solutions.
Where this research is happening
Atlanta, United States
- Georgia State University — Atlanta, United States (Active)
Researchers
- Principal investigator: Arias, Jalayne J — Georgia State University
- Study coordinator: Arias, Jalayne J
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.