RECRUITING

Biliary Atresia Research Network Northeast

Conditions

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

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.

Official Title

Biliary Atresia Research Network Northeast (BARNN)

Quick Facts

Study Start:2024-05-06
Study Completion:2024-12
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT06184971

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.

Ages Eligible for Study:Not specified to 12 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD
Inclusion CriteriaExclusion Criteria
  1. * Children with a healthcare encounter related to biliary atresia at a participating institution during the study period (January 1st, 2012 through December 31st, 2021)
  2. * 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)
  3. * Diagnosis of biliary atresia, based on one of the following ICD-10 codes:
  4. * Q44.2 Atresia of bile ducts
  5. * Q44.3 Congenital stenosis and stricture of bile ducts
  6. * Q44.4 Disorders of the biliary tract with major complication or comorbidity
  7. * Q44.5 Other congenital malformations of the bile ducts
  8. * Q44.6 Disorders of the biliary tract without major complication or comorbidity
  1. * Patients aged 13 years old or older during the study period (i.e. those born before January 2nd, 1999)
  2. * Patients born and/or diagnosed with biliary atresia after the end of the study period (i.e. those born after December 31st, 2021)
  3. * No diagnosis of biliary atresia
  4. * 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)

Contacts and Locations

Study Contact

Isabelle Curran
CONTACT
203-785-2701
isabelle.curran@yale.edu
Beverly Newlove
CONTACT
beverly.newlove@yale.edu

Principal Investigator

Robert Cowles, MD
PRINCIPAL_INVESTIGATOR
Yale University

Study Locations (Sites)

Connecticut Children's Medical Center
Hartford, Connecticut, 06106
United States
Yale University
New Haven, Connecticut, 06510
United States
Eastern Maine Medical Center
Bangor, Maine, 04401
United States
Maine Medical Center
Portland, Maine, 04102
United States
Massachusetts General Hospital for Children
Boston, Massachusetts, 02114
United States
Boston Children's Hospital
Boston, Massachusetts, 02115
United States
Baystate
Springfield, Massachusetts, 01199
United States
UMass Memorial Medical Center
Worcester, Massachusetts, 01605
United States
Dartmouth-Hitchcock Medical Center
Lebanon, New Hampshire, 03756
United States
Albany Medical Center/Bernard & Millie Duke's Children's Hospital
Albany, New York, 12208
United States
John R. Oishei Children's Hospital
Buffalo, New York, 14203
United States
University of Rochester Medical Center/Golisano Children's Hospital
Rochester, New York, 14642
United States
SUNY Upstate Medical University
Syracuse, New York, 13210
United States
Rhode Island Hospital/Hasbro Children's Hospital
Providence, Rhode Island, 02905
United States

Collaborators and Investigators

Sponsor: Yale University

  • Robert Cowles, MD, PRINCIPAL_INVESTIGATOR, Yale University

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2024-05-06
Study Completion Date2024-12

Study Record Updates

Study Start Date2024-05-06
Study Completion Date2024-12

Terms related to this study

Additional Relevant MeSH Terms

  • Biliary Atresia