Improving Data for Rare Disease Research
Data Management Core
This project helps organize and manage important information from clinical research to better understand and treat rare diseases affecting children and adults.
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 ID | NIH-11143493 on NIH RePORTER |
What this research studies
Many rare diseases affect millions of Americans, but we often lack enough information about their causes, how they progress, and how to best diagnose and classify them. Because these diseases are rare, it's hard for patients to find specialized care and participate in research, and there are few proven treatments. This project creates a central hub to provide expert data management and statistical support for a network of clinical research groups focused on rare diseases. By improving how data is collected and analyzed, this effort aims to speed up the development of new insights and treatments.
Who could benefit from this research
Good fit: Patients with rare diseases, especially those affecting children, could benefit from the advancements in research supported by this data management core.
Not a fit: Patients without a rare disease would not directly benefit from the specific research supported by this data management core.
Why it matters
Potential benefit: This work could lead to a better understanding of rare diseases, more accurate diagnoses, and the development of new, effective treatments for patients.
How similar studies have performed: Centralized data management and coordination centers have proven essential in supporting large-scale clinical research networks and accelerating scientific progress.
Where this research is happening
Cincinnati, United States
- Cincinnati Childrens Hosp Med Ctr — Cincinnati, United States (Active)
Researchers
- Principal investigator: Kouril, Michal — Cincinnati Childrens Hosp Med Ctr
- Study coordinator: Kouril, Michal
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.