This is a multi-center project to establish a prospective database of clinical information and a repository of blood and tissue samples from children with diagnoses of neonatal liver diseases, such as biliary atresia and neonatal hepatitis in order to perform research in these liver problems. Children were screened and enrolled at presentation at the participating pediatric liver sites. Participants diagnosed with biliary atresia were followed intensively for the first year, at 18 months of age, then annually up to 20 years of age, liver transplantation, or resolution of the underlying liver disease. Other subjects diagnosed with cholestasis were followed on the same schedule; if there was complete (clinical and biochemical) resolution of their underlying liver disease off all therapy, there was one follow up visit within one year (preferably scheduled at the time of the next planned follow up visit or at 12 months of age, whichever was later) for data collection and to obtain blood samples. The development of a serum and tissue bank of specimens from children with various neonatal cholestatic disorders are for use by future investigations into the etiology and pathogenesis of hepatobiliary injury in the infant.
The data package available for request includes analysis datasets from multiple publications including combined data from the BASIC, LOGIC, and START studies.
Establish a database of clinical information and collect samples of blood, DNA, urine, and liver tissue for research purposes.
Inclusion Criteria:
This study is ongoing.
Liver Disease, Digestive Diseases
Observational
2004-04
2029-05
Biliary Atresia, Bile Duct Disorder, Cholestasis
extracorporeal membrane oxygenation, cholestasis, Hepatobiliary, billary tissie, billary atresia, neonatal hepatitis
DDN
Document Name | Description | Document Type | File Format |
---|---|---|---|
Dataset Name | Description | # of Records | # of Variables | File Format(s) |
---|---|---|---|---|
Specimen | Count |
---|---|
BILE | 5 |
Bile Duct | 4342 |
Bile-GB Aspirate | 30 |
Biliary Remnant | 242 |
Cells | 749 |
Cinci Core Bx | 1 |
DNA | 16235 |
EBV Transformed Cell Lines | 5911 |
Gallbladder | 4302 |
Liver Biopsy | 10 |
Liver Explant | 10 |
Liver Perc Bx | 520 |
Liver Tissue | 24436 |
Liver Wedge Bx | 562 |
Lymph Node | 361 |
Lymphocytes | 668 |
Mitochondrial RNA | 1897 |
Percutaneous Bx | 800 |
Plasma | 34858 |
Protein | 1390 |
R-RBC | 8 |
RNA | 1385 |
Serum | 32379 |
Urine | 9875 |
Wedge Bx | 7352 |