Biliary Atresia Research Network Northeast

Description

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.

Conditions

Biliary Atresia

Study Overview

Study Details

Study overview

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.

Biliary Atresia Research Network Northeast (BARNN)

Biliary Atresia Research Network Northeast

Condition
Biliary Atresia
Intervention / Treatment

-

Contacts and Locations

Hartford

Connecticut Children's Medical Center, Hartford, Connecticut, United States, 06106

New Haven

Yale University, New Haven, Connecticut, United States, 06510

Bangor

Eastern Maine Medical Center, Bangor, Maine, United States, 04401

Portland

Maine Medical Center, Portland, Maine, United States, 04102

Boston

Massachusetts General Hospital for Children, Boston, Massachusetts, United States, 02114

Boston

Boston Children's Hospital, Boston, Massachusetts, United States, 02115

Springfield

Baystate, Springfield, Massachusetts, United States, 01199

Worcester

UMass Memorial Medical Center, Worcester, Massachusetts, United States, 01605

Lebanon

Dartmouth-Hitchcock Medical Center, Lebanon, New Hampshire, United States, 03756

Albany

Albany Medical Center/Bernard & Millie Duke's Children's Hospital, Albany, New York, United States, 12208

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • * 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
  • * 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)

Ages Eligible for Study

to 12 Years

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

Yale University,

Robert Cowles, MD, PRINCIPAL_INVESTIGATOR, Yale University

Study Record Dates

2024-12