Data Management and Coordinating Center support for Rare Diseases Research
Official title: Data Management and Coordinating Center: Rare Diseases Clinical Research Network Administrative Supplement
Funded at Cincinnati Childrens Hosp Med Ctr · NIH-11591458 · Data updated 2026-11-12
A national rare diseases research program is funding a center to manage data and coordinate studies to help improve diagnosis, care, and potential treatments for children with rare conditions.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Cincinnati Childrens Hosp Med Ctr NIH-funded |
| Lab location | 1 site (Cincinnati, United States) |
| Project start | September 1, 2026 |
| Project end | June 30, 2030 |
| Funding year | 2026 |
| Award (this year) | $1,296,000 |
| NIH project number | 3U2CTR002818-07S1 |
| Project ID | NIH-11591458 on NIH RePORTER |
Who could benefit from this research
✓Could help
Pediatric patients with rare diseases or undiagnosed conditions who may participate in RDCRN-related studies or benefit from improved clinical research infrastructure.
✕Less likely to help
Direct patient benefits may be limited if a specific patient trial is not yet available or if participation is not required for care improvements.
What this research studies
This project provides advanced data management, biostatistics, and coordinating expertise to support rare disease research in children. It focuses on improving data quality, study design, and collaboration across research networks to speed evidence generation. The center will help researchers handle complex, multi-site data and ensure consistent definitions, classifications, and analyses for better clinical trial readiness. It is led by Cincinnati Children’s Hospital Medical Center with Dr. Maurizio Macaluso as the principal investigator.
Why it matters
Potential benefit: If successful, the program could streamline data-driven approaches to diagnose and treat rare pediatric diseases more efficiently.
How similar studies have gone: RDCRN-related data management centers have previously enhanced multi-site collaboration and trial readiness in rare diseases.
Where this research is happening
-
Cincinnati Childrens Hosp Med Ctr
Cincinnati, United States Active
Researchers
- Principal investigator: Macaluso, Maurizio — Cincinnati Childrens Hosp Med Ctr
- Study coordinator: Macaluso, Maurizio
Related research
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-
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Encore: speeding up finding new uses for existing drugs to help kids with rare diseases
A big NIH project will test thousands of existing medicines to see if any can help treat rare genetic diseases in children.
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Advancing Craniosynostosis Care: Pilot/Feasibility Governance Core
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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.