RecruitingNCT06184971

Biliary Atresia Research Network Northeast

Biliary Atresia Research Network Northeast (BARNN)


Sponsor

Yale University

Enrollment

150 participants

Start Date

May 6, 2024

Study Type

OBSERVATIONAL

Conditions

Summary

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.


Eligibility

Max Age: 12 Years

Inclusion Criteria8

  • 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

Exclusion Criteria4

  • 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)

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Locations(14)

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

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NCT06184971


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