Batten Disease Clinical Research Consortium
Funded at Hugo W. Moser Res Inst Kennedy Krieger · NIH-11417480 · Data updated 2026-11-12
A multi-center effort to accelerate research and trial readiness for Batten disease to help kids with NCLs access better therapies.
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) | $1,598,164 |
| NIH project number | 5U54HD122210-02 |
| Project ID | NIH-11417480 on NIH RePORTER |
Who could benefit from this research
✓Could help
Children and families affected by Batten disease or related NCLs who may participate in future trials or benefit from improved care standards and data collection.
✕Less likely to help
Patients not currently eligible for trials or without access to participating sites may see indirect benefits through general care improvements.
What this research studies
This initiative builds a network of expert centers, families, and patient groups to streamline clinical trials for Batten disease and related NCLs. It will focus on improving study design, data quality, and collaboration to speed the development of new treatments. The consortium will coordinate across sites to share standards, registries, and patient-relationship processes, making trials more efficient and patient-friendly. While advancing science, it will also work on improving care practices and patient outcomes across participating families.
Why it matters
Potential benefit: If successful, the project could speed the development of therapies and improve care standards for children affected by Batten disease.
How similar studies have gone: Other disease-specific consortia have shown that coordinated, multi-site networks can accelerate trial readiness and data quality.
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.