PROBE is a study for infants up to age 6 months with jaundice from liver disease.
The purpose of this national study is:
- To establish a prospective national database with demographic and clinical information about infants with cholestatic disease and their families
- The database will provide the means of prospectively following these children over time to characterize the natural history of the disease and to identify risk factors (such as environmental, infectious and genetic ) related to the onset, outcome and success of treatment(s) for the different cholestatic disease, with special emphasis on biliary atresia
- To establish repositories for blood, urine, bile and tissue samples from these children and their first degree relatives
- Children age = 180 days
- Diagnosis of cholestasis
- Parent/guardian informed written consent
- Patients must receive their care and follow up at one of the ChiLDREN clinical centers
Study participants will make a series of visits for physical examinations and include collection of blood an urine samples as would normally happen in the course of their medical care. Visits are generally scheduled at 1, 2, 3 and 6 months after diagnosis, and at 12, 18 and 24 months of age and then annually until 10 years of age.