Connecting Patients and Sharing Knowledge for Rare Diseases
Engagement and Dissemination Core
['FUNDING_OTHER'] · CINCINNATI CHILDRENS HOSP MED CTR · NIH-11143495
This project helps bring together patients, families, and researchers to share information and speed up discoveries for rare diseases.
Quick facts
| Phase | ['FUNDING_OTHER'] |
|---|---|
| Study type | Nih_funding |
| Sex | All |
| Sponsor | CINCINNATI CHILDRENS HOSP MED CTR (nih funded) |
| Locations | 1 site (CINCINNATI, UNITED STATES) |
| Trial ID | NIH-11143495 on ClinicalTrials.gov |
What this research studies
Many rare diseases lack clear understanding, making diagnosis and treatment difficult for patients and their families. This project supports a national network that works to improve how we diagnose, manage, and treat these conditions. By connecting different research groups and sharing important findings, it aims to make it easier for patients to find and participate in clinical studies. This effort helps overcome challenges like the small number of patients for each rare disease and their wide geographic spread.
Who could benefit from this research
Good fit: This project supports research for all individuals affected by rare diseases, particularly children and youth aged 0-21 years old.
Not a fit: Individuals not living with a rare disease would not directly benefit from the activities of this specific support project.
Why it matters
Potential benefit: If successful, this project will help accelerate the development of new ways to diagnose and treat rare diseases, ultimately improving care for affected individuals.
How similar studies have performed: This project is a core component of a well-established national research network, a common and successful model for coordinating complex research efforts.
Where this research is happening
CINCINNATI, UNITED STATES
- CINCINNATI CHILDRENS HOSP MED CTR — CINCINNATI, UNITED STATES (ACTIVE)
Researchers
- Principal investigator: SEID, MICHAEL — CINCINNATI CHILDRENS HOSP MED CTR
- Study coordinator: SEID, MICHAEL
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.