Children's clinic network for bile duct and cholestatic liver conditions
Clinical Center for Cholestatic Liver Disease in Children
['FUNDING_U01'] · CINCINNATI CHILDRENS HOSP MED CTR · NIH-11286239
This project will add a clinical research coordinator to help enroll and keep more children from diverse backgrounds in long-term studies of biliary atresia, Alagille syndrome, and primary sclerosing cholangitis.
Quick facts
| Phase | ['FUNDING_U01'] |
|---|---|
| Study type | Nih_funding |
| Sex | All |
| Sponsor | CINCINNATI CHILDRENS HOSP MED CTR (nih funded) |
| Locations | 1 site (CINCINNATI, UNITED STATES) |
| Trial ID | NIH-11286239 on ClinicalTrials.gov |
What this research studies
If your child has a bile duct or cholestatic liver condition, this program is working to make it easier for families from all backgrounds to join and stay in ChiLDReN long-term studies. The team will hire a dedicated clinical research coordinator who will use enrollment logs and electronic health records to find underrepresented patients and address barriers to participation. They will implement outreach and retention strategies aimed at Black, Asian, Hispanic, and socioeconomically diverse families. The work is done through the multicenter Childhood Liver Disease Research Network in partnership with pediatric hospitals like Cincinnati Children's.
Who could benefit from this research
Good fit: Children (including infants) with extrahepatic biliary atresia, Alagille syndrome, or primary sclerosing cholangitis whose families are willing to participate in ChiLDReN longitudinal protocols are the ideal candidates.
Not a fit: Adults, children without these specific cholestatic liver conditions, or families unable to attend or be referred to a ChiLDReN site are unlikely to benefit from this program.
Why it matters
Potential benefit: Improved and more representative enrollment could lead to a clearer understanding of these diseases across populations and fairer access to future advances in care.
How similar studies have performed: Other pediatric research networks have shown that hiring dedicated coordinators and targeted outreach can improve enrollment and retention, but disparities in participation remain a persistent challenge.
Where this research is happening
CINCINNATI, UNITED STATES
- CINCINNATI CHILDRENS HOSP MED CTR — CINCINNATI, UNITED STATES (ACTIVE)
Researchers
- Principal investigator: MIETHKE, ALEXANDER — CINCINNATI CHILDRENS HOSP MED CTR
- Study coordinator: MIETHKE, ALEXANDER
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.
Conditions: Alagille Syndrome, Alagille-Watson Syndrome