BARE Task Force

Newborn Screening & Early Detection

BARE believes every baby deserves a chance at a healthy start in life. For infants born with biliary atresia (BA), early detection can be the difference between life-saving treatment and a crisis that comes too late. BARE is leading a national effort to make early detection and newborn screening for biliary atresia the standard of care—so no family has to hear, “we wish we had caught this sooner.”

In 2023 BARE convened the Newborn Screening & Early Detection Task Force—a multidisciplinary group driving strategy, projects, and policy.

Who We Are

Parents and caregivers with lived experience of biliary atresia and liver transplant

Pediatric hepatologists and transplant surgeonss

Newborn screening & public health experts

Nurses, advanced practice providers & social workers

Policy, advocacy & nonprofit leaders

Together, we bring clinical expertise, systems knowledge, and family voice to one table.

The Newborn Screening Task Force Includes:

What The Task Force Does

The Task Force focuses on three core areas:

Education & Awareness
- Develops tools for nurseries, pediatric practices, and families.
- Promotes consistent messaging about prolonged jaundice, pale stools, and early referrals.
Policy & Advocacy
- Identifies pathways to include biliary atresia in state and federal newborn screening discussions.
- Engages with public health leaders, policymakers, and advisory groups.
Clinical Tools & Research
- Supports and disseminates tools like BiliScreen.org.
- Helps design and interpret studies on early detection and outcomes to inform best practices.

BiliScreen.org: A Tool to Support Earlier Diagnosis

Under a BARE grant, Dr. Sanjiv Harpavat (Texas Children’s) and Dr. Tebyan Rabbani (Stanford Children’s)—both BARE Task Force members—developed BiliScreen.org, a free, web-based tool to support biliary atresia early detection.

What BiliScreen.org Does

BiliScreen.org is designed primarily for clinicians and health systems and aims to:

Simplify the evaluation pathway for infants with jaundice

or concerning symptoms.

Help providers think systematically about:
- Persistent jaundice past the newborn period
- Abnormal stool color
- When to order labs and imaging
- When to refer to pediatric hepatology.

It is not a diagnostic tool and does not replace clinical judgment, but it:

Provides structured guidance aligned with current knowledge.
Encourages timely testing and referrals so that biliary atresia is not missed or detected too late.

By supporting clinicians at the bedside and in the clinic, BiliScreen.org helps move early detection from “best intention” to real-world practice.

For Patients and Families

If you are a parent or caregiver:

Learn the early signs that warrant follow-up:
- Jaundice (yellow eyes/skin) lasting beyond 2 weeks of age
- Pale, gray, or white stools
- Poor weight gain or feeding

Ask your pediatrician:
- “Could this be related to my baby’s liver?”
- “Do we need bloodwork or a specialist referral?”

BARE is here to:

Connect you with information, support, and community.
Help you navigate conversations with your care team.
Ensure your lived experience continues to inform national early detection work.

For Physicians & Healthcare Systems

If you are a clinician, hospital leader, or public health partner, BARE can collaborate with you to:

Share educational materials and toolkits for nurseries and clinics.
Introduce or scale early detection workflows in your institution or region.
Partner on quality improvement, research, and implementation projects.
Connect you with other centers and leaders engaged in biliary atresia early detection.

To explore collaboration or education opportunities, please reach out to: