A Prospective Database of Infants With Cholestasis

NCT ID: NCT00061828

Last Updated: 2025-10-15

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

1000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2004-04-21

Study Completion Date

2029-05-31

Brief Summary

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Biliary atresia, idiopathic neonatal hepatitis, and specific genetic cholestatic conditions are the most common causes of jaundice and hyperbilirubinemia that continue beyond the newborn period. The long term goal of the Childhood Liver Disease Research Network (ChiLDReN) is to establish a database of clinical information and plasma, serum, and tissue samples from cholestatic children to facilitate research and to perform clinical, epidemiological and therapeutic trials in these important pediatric liver diseases.

Detailed Description

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This is a multi-center project to establish a prospective database of clinical information and a repository of blood, from children with diagnosis of neonatal liver disease, such as biliary atresia (BA), in order to perform research in this important liver problem. Children (diagnosed with BA or suspicious for BA) will be screened and enrolled at presentation at the participating pediatric liver sites. Participants diagnosed with BA will be followed intensively for the first year, at 18 months of age, and then annually up to 10 years of age, and then biannually, or liver transplantation. Other participants (Non-BA) diagnosed with cholestasis will be exited from the study at the time of diagnosis determination.

Detailed clinical data, laboratory investigations, liver and biliary specimens, and long-term follow-up of outcomes are part of the normal standard of care with respect to the diagnosis and treatment of the subjects with liver problems. This research involves the collection of diagnostic, clinical and outcome data concerning the subject, which is kept without identification (coded) in a national research database of infants with liver disease. Samples of blood will be obtained for later research analysis, whenever possible, at the time of clinically indicated blood draws or when there is IV access for a clinical procedure. All data from this study will be kept in a secure research database at the Scientific Data Coordinating Center (SDCC) and transferred to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) data repository after the study ends.

Conditions

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Biliary Atresia

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Biliary Atresia

Infants presenting with cholestasis who are diagnosed with biliary atresia.

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

* Infant's age less than or equal to 180 days at initial presentation at the ChiLDReN clinical site.
* Diagnosis of cholestasis defined by serum direct or conjugated bilirubin greater than or equal to 2 mg/dl and suspected biliary atresia.
* The subject's parent(s)/guardian(s) willing to provide informed written consent.

Exclusion Criteria

* Acute liver failure.
* Previous hepatobiliary surgery with dissection or excision of biliary tissue.
* Diagnoses of bacterial or fungal sepsis (except where associated with metabolic liver disease)
* Diagnoses of hypoxia, shock or ischemic hepatopathy within the past two weeks (If the cholestasis persists beyond two weeks of the initiating event, the infant can be enrolled).
* Diagnosis of any malignancy.
* Presence of any primary hemolytic disease (except when diagnosed with biliary atresia or another cholestatic disease being studied by ChiLDREN).
* Diagnosis of any drug or Total parenteral nutrition (TPN)-associated cholestasis (except when diagnosed with biliary atresia or another cholestatic disease being studied by ChiLDREN).
* Diagnosis with Extracorporeal membrane oxygenation (ECMO)-associated cholestasis.
* Birth weight less than 1500g (except when diagnosed with biliary atresia).
Maximum Eligible Age

6 Months

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

NIH

Sponsor Role collaborator

Arbor Research Collaborative for Health

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Saul Karpen, MD, PhD

Role: STUDY_CHAIR

VCU School of Medicine

Ed Doo, MD

Role: STUDY_DIRECTOR

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

John Magee, MD

Role: PRINCIPAL_INVESTIGATOR

University of Michigan Medical Center, Ann Arbor

Lisa Henn, PhD

Role: PRINCIPAL_INVESTIGATOR

Arbor Research Collaborative for Health

Katrina Loh, MD

Role: STUDY_DIRECTOR

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

Locations

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Children's Hospital Los Angeles

Los Angeles, California, United States

Site Status RECRUITING

University of California

San Francisco, California, United States

Site Status COMPLETED

Children's Hospital Colorado

Aurora, Colorado, United States

Site Status RECRUITING

Children's Healthcare of Atlanta - Emory University

Atlanta, Georgia, United States

Site Status RECRUITING

Ann & Robert H. Lurie Children's Hospital of Chicago

Chicago, Illinois, United States

Site Status RECRUITING

Riley Hospital for Children

Indianapolis, Indiana, United States

Site Status COMPLETED

Johns Hopkins School of Medicine

Baltimore, Maryland, United States

Site Status COMPLETED

Washington University School of Medicine

St Louis, Missouri, United States

Site Status COMPLETED

Mount Sinai Medical Center

New York, New York, United States

Site Status COMPLETED

Cincinnati Children's Hospital Medical Center

Cincinnati, Ohio, United States

Site Status RECRUITING

Children's Hospital of Philadelphia

Philadelphia, Pennsylvania, United States

Site Status RECRUITING

UPMC Children's Hospital of Pittsburgh

Pittsburgh, Pennsylvania, United States

Site Status RECRUITING

Baylor College of Medicine

Houston, Texas, United States

Site Status RECRUITING

University of Utah

Salt Lake City, Utah, United States

Site Status RECRUITING

Seattle Children's Hospital

Seattle, Washington, United States

Site Status RECRUITING

The Hospital for Sick Children

Toronto, Ontario, Canada

Site Status COMPLETED

Countries

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United States Canada

Central Contacts

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Terese A Howell, BS

Role: CONTACT

734 476-5340

Melissa Sexton, BBA

Role: CONTACT

734-693-3811

Facility Contacts

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Sirikorn Boonsawat

Role: primary

323-361-2181

Cynthia Castanon

Role: primary

720-777-0587

Michelle Landis

Role: backup

720-777-8884

Katelynn Harris

Role: primary

404-785-0421

Jordyn Turner

Role: backup

404-785-3690

Jacqueline Alexander

Role: primary

312-227-3523

Angela Anthony

Role: backup

312-227-4559

Jennifer Hawkins, MS

Role: primary

513-636-7818

Erin Chapman, BAS

Role: backup

513-803-7482

Caitlin Griffiths

Role: primary

267-577-9888

Jordan Moreno

Role: backup

267-425-1614

Audrey Fitzgerald

Role: primary

412-692-3378

Susan Richey, RN

Role: backup

412-692-6337

Laurel Cavallo

Role: primary

832-822-1053

Cynthia Tsai, MPH

Role: backup

832-822-3634

Ann Rutherford

Role: primary

801-585-9495

Natalie Fillerup

Role: backup

801-587-5670

Melissa Young

Role: primary

206-987-1037

Teresa Chen

Role: backup

206-987-6649

References

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Teckman J, Rosenthal P, Ignacio RV, Spino C, Bass LM, Horslen S, Wang K, Magee JC, Karpen S, Asai A, Molleston JP, Squires RH, Kamath BM, Guthery SL, Loomes KM, Shneider BL, Sokol RJ; ChiLDReN (Childhood Liver Disease Research Network). Neonatal cholestasis in children with Alpha-1-AT deficiency is a risk for earlier severe liver disease with male predominance. Hepatol Commun. 2023 Dec 7;7(12):e0345. doi: 10.1097/HC9.0000000000000345. eCollection 2023 Dec 1.

Reference Type DERIVED
PMID: 38055647 (View on PubMed)

Kemme S, Canniff JD, Feldman AG, Garth KM, Li S, Pan Z, Sokol RJ, Weinberg A, Mack CL. Cytomegalovirus in biliary atresia is associated with increased pretransplant death, but not decreased native liver survival. Hepatol Commun. 2023 Jul 17;7(8):e0175. doi: 10.1097/HC9.0000000000000175. eCollection 2023 Aug 1.

Reference Type DERIVED
PMID: 37471052 (View on PubMed)

Hertel PM, Hawthorne K, Kim S, Finegold MJ, Shneider BL, Squires JE, Gupta NA, Bull LN, Murray KF, Kerkar N, Ng VL, Molleston JP, Bezerra JA, Loomes KM, Taylor SA, Schwarz KB, Turmelle YP, Rosenthal P, Magee JC, Sokol RJ; Childhood Liver Disease Research Network (ChiLDReN). Presentation and Outcomes of Infants With Idiopathic Cholestasis: A Multicenter Prospective Study. J Pediatr Gastroenterol Nutr. 2021 Oct 1;73(4):478-484. doi: 10.1097/MPG.0000000000003248.

Reference Type DERIVED
PMID: 34310436 (View on PubMed)

Ng VL, Sorensen LG, Alonso EM, Fredericks EM, Ye W, Moore J, Karpen SJ, Shneider BL, Molleston JP, Bezerra JA, Murray KF, Loomes KM, Rosenthal P, Squires RH, Wang K, Arnon R, Schwarz KB, Turmelle YP, Haber BH, Sherker AH, Magee JC, Sokol RJ; Childhood Liver Disease Research Network (ChiLDReN). Neurodevelopmental Outcome of Young Children with Biliary Atresia and Native Liver: Results from the ChiLDReN Study. J Pediatr. 2018 May;196:139-147.e3. doi: 10.1016/j.jpeds.2017.12.048. Epub 2018 Mar 5.

Reference Type DERIVED
PMID: 29519540 (View on PubMed)

Shneider BL, Magee JC, Karpen SJ, Rand EB, Narkewicz MR, Bass LM, Schwarz K, Whitington PF, Bezerra JA, Kerkar N, Haber B, Rosenthal P, Turmelle YP, Molleston JP, Murray KF, Ng VL, Wang KS, Romero R, Squires RH, Arnon R, Sherker AH, Moore J, Ye W, Sokol RJ; Childhood Liver Disease Research Network (ChiLDReN). Total Serum Bilirubin within 3 Months of Hepatoportoenterostomy Predicts Short-Term Outcomes in Biliary Atresia. J Pediatr. 2016 Mar;170:211-7.e1-2. doi: 10.1016/j.jpeds.2015.11.058. Epub 2015 Dec 24.

Reference Type DERIVED
PMID: 26725209 (View on PubMed)

Ye W, Rosenthal P, Magee JC, Whitington PF; Childhood Liver Disease Research and Education Network. Factors Determining delta-Bilirubin Levels in Infants With Biliary Atresia. J Pediatr Gastroenterol Nutr. 2015 May;60(5):659-63. doi: 10.1097/MPG.0000000000000690.

Reference Type DERIVED
PMID: 25564820 (View on PubMed)

Bessho K, Mourya R, Shivakumar P, Walters S, Magee JC, Rao M, Jegga AG, Bezerra JA. Gene expression signature for biliary atresia and a role for interleukin-8 in pathogenesis of experimental disease. Hepatology. 2014 Jul;60(1):211-23. doi: 10.1002/hep.27045. Epub 2014 May 27.

Reference Type DERIVED
PMID: 24493287 (View on PubMed)

Shneider BL, Abel B, Haber B, Karpen SJ, Magee JC, Romero R, Schwarz K, Bass LM, Kerkar N, Miethke AG, Rosenthal P, Turmelle Y, Robuck PR, Sokol RJ; Childhood Liver Disease Research and Education Network. Portal hypertension in children and young adults with biliary atresia. J Pediatr Gastroenterol Nutr. 2012 Nov;55(5):567-73. doi: 10.1097/MPG.0b013e31826eb0cf.

Reference Type DERIVED
PMID: 22903006 (View on PubMed)

Zahm AM, Hand NJ, Boateng LA, Friedman JR. Circulating microRNA is a biomarker of biliary atresia. J Pediatr Gastroenterol Nutr. 2012 Oct;55(4):366-9. doi: 10.1097/MPG.0b013e318264e648.

Reference Type DERIVED
PMID: 22732895 (View on PubMed)

Related Links

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http://www.childrennetwork.org

Childhood Liver Disease Research Network (ChiLDReN) website

Other Identifiers

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U01DK103149

Identifier Type: NIH

Identifier Source: secondary_id

View Link

U01DK103140

Identifier Type: NIH

Identifier Source: secondary_id

View Link

U01DK103135

Identifier Type: NIH

Identifier Source: secondary_id

View Link

U01DK084575

Identifier Type: NIH

Identifier Source: secondary_id

View Link

U01DK084538

Identifier Type: NIH

Identifier Source: secondary_id

View Link

U01DK084536

Identifier Type: NIH

Identifier Source: secondary_id

View Link

U01DK062503

Identifier Type: NIH

Identifier Source: secondary_id

View Link

U01DK062500

Identifier Type: NIH

Identifier Source: secondary_id

View Link

U01DK062497

Identifier Type: NIH

Identifier Source: secondary_id

View Link

U01DK062481

Identifier Type: NIH

Identifier Source: secondary_id

View Link

U01DK062470

Identifier Type: NIH

Identifier Source: secondary_id

View Link

U01DK062466

Identifier Type: NIH

Identifier Source: secondary_id

View Link

U01DK062456

Identifier Type: NIH

Identifier Source: secondary_id

View Link

U01DK062453

Identifier Type: NIH

Identifier Source: secondary_id

View Link

U01DK062452

Identifier Type: NIH

Identifier Source: secondary_id

View Link

U01DK062445

Identifier Type: NIH

Identifier Source: secondary_id

View Link

U01DK062436

Identifier Type: NIH

Identifier Source: secondary_id

View Link

U24DK062456

Identifier Type: NIH

Identifier Source: secondary_id

View Link

PROBE Study - ChiLDReN Network

Identifier Type: -

Identifier Source: org_study_id

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