BDCRC Administrative Core: coordinating Batten disease research
Official title: BDCRC - Administrative Core
Funded at Hugo W. Moser Res Inst Kennedy Krieger · NIH-11417520 · Data updated 2026-11-12
A central hub will organize and coordinate Batten disease research efforts, connect patients and families with researchers, and support data sharing and biorepository work.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Hugo W. Moser Res Inst Kennedy Krieger NIH-funded |
| Lab location | 1 site (Baltimore, United States) |
| Project start | September 15, 2025 |
| Project end | August 31, 2030 |
| Funding year | 2026 |
| Award (this year) | $369,060 |
| NIH project number | 5U54HD122210-02 |
| Project ID | NIH-11417520 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates are families and individuals affected by Batten disease and Batten-related disorders who may contribute to discussions, advocacy, or participate in future studies initiated through BDCRC.
✕Less likely to help
Patients not directly involved in BDCRC activities or those outside the Batten disease community may see indirect benefits through better information and collaboration.
What this research studies
If this grant is funded, the Administrative Core will guide and synchronize multiple cores and research projects focused on Batten disease. It will serve as the main link among patient families, advocacy groups, industry, and researchers, ensuring clear communication and timely dissemination of findings. The core will oversee operations, budgets, compliance, and integration of biostatistics and bioinformatics, and help establish a national Batten disease biorepository to support future studies.
Why it matters
Potential benefit: Strengthened coordination could speed up patient-centered research and improve access to information and resources for families affected by Batten disease.
How similar studies have gone: Similar research consortia have shown that organized networks can accelerate progress by coordinating trials, data sharing, and stakeholder engagement.
Where this research is happening
-
Hugo W. Moser Res Inst Kennedy Krieger
Baltimore, United States Active
Researchers
- Principal investigator: Augustine, Erika — Hugo W. Moser Res Inst Kennedy Krieger
- Study coordinator: Augustine, Erika
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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.