Biliary Atresia Research Network Northeast

Completed

Conditions studied: Biliary Atresia

In brief

This is a multi-center retrospective chart review to compile a data repository of the management and outcomes of children with biliary atresia. Overall, investigators aim to evaluate which specific factors contribute to improved patient outcomes, to help guide potential improvements in patient care and resource utilization.

Key facts

Study ID

NCT06184971

Run by

Yale University

People needed

320

Starts

2024-05-06

Expected to finish

2026-03-27

Last updated by the study team

2026-06-25

Who can join

Age: any, up to 12. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Children with a healthcare encounter related to biliary atresia at a participating institution during the study period (January 1st, 2012 through December 31st, 2021)
• Age 12 years and younger at the time of the qualifying encounter during the study period (encompassing patients born between January 2nd, 1999 through December 31st, 2021)
• Diagnosis of biliary atresia, based on one of the following ICD-10 codes:
• Q44.2 Atresia of bile ducts
• Q44.3 Congenital stenosis and stricture of bile ducts
• Q44.4 Disorders of the biliary tract with major complication or comorbidity
• Q44.5 Other congenital malformations of the bile ducts
• Q44.6 Disorders of the biliary tract without major complication or comorbidity

You may not qualify if…

• Patients aged 13 years old or older during the study period (i.e. those born before January 2nd, 1999)
• Patients born and/or diagnosed with biliary atresia after the end of the study period (i.e. those born after December 31st, 2021)
• No diagnosis of biliary atresia
• History of biliary atresia without any episodes of care related to biliary atresia during the study period (e.g. a teenager with history of BA who underwent Kasai procedure as an infant and has no current issues related to their BA and is receiving care for an unrelated reason)

Where it is running

• Connecticut Children's Medical Center — Hartford, Connecticut, United States
• Yale University — New Haven, Connecticut, United States
• Eastern Maine Medical Center — Bangor, Maine, United States
• Maine Medical Center — Portland, Maine, United States
• Massachusetts General Hospital for Children — Boston, Massachusetts, United States
• Boston Children's Hospital — Boston, Massachusetts, United States
• Baystate — Springfield, Massachusetts, United States
• UMass Memorial Medical Center — Worcester, Massachusetts, United States
• Dartmouth-Hitchcock Medical Center — Lebanon, New Hampshire, United States
• Albany Medical Center/Bernard & Millie Duke's Children's Hospital — Albany, New York, United States
• John R. Oishei Children's Hospital — Buffalo, New York, United States
• University of Rochester Medical Center/Golisano Children's Hospital — Rochester, New York, United States
• SUNY Upstate Medical University — Syracuse, New York, United States
• Rhode Island Hospital/Hasbro Children's Hospital — Providence, Rhode Island, United States

Full record on ClinicalTrials.gov

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