The NABER is now accepting patients!
About the registry
Click here to review our recent publication in Neonatology (Jan 22, 2019).
Ref: Bahr T.M. · Christensen R.D. · Agarwal A.M. · George T.I. · Bhutani V.K.
Neonatology 2019;115:242–246 (DOI:10.1159/000495518)
Acute bilirubin encephalopathy
- Acute bilirubin encephalopathy (ABE) still occurs in ~1 per 60,000 births in the U.S.
- Previous publications report that ~50% of neonates with ABE have no explanation found for their jaundice (“idiopathic”).
Next Generation sequencing (NGS)
- In 2016, the University of Utah with ARUP Laboratories developed a 28-gene Next Generation Sequencing (NGS) panel to discover underlying genetic causes of ABE.
36-month nationwide registry
- The NABER will administer a national voluntary registry of neonates with ABE in the USA over a 36-month period.
- The registry will collect clinical and genetic information about each neonate in order to determine the root causes of ABE in the USA.
Recruitment and Enrolling
- Any physician in the USA can enroll a patient. Enrolled neonates will receive free 28-gene panel NGS sequencing.
- The neonate must be ≤ 14 days and:
- Have a Total Serum Bili ≥ 28 mg/dL (or have undergone an exchange transfusion).
- Have a BIND (bilirubin induced neurological dysfunction) Score ≥ 4; see scoring chart below.
Enrollment Steps
1. Parent Information, consent, and lab forms
- If you identify a candidate for the registry, print the forms here.
- Allow the patient’s family to review the information and consents.
- All study questions should be directed to the study team through the NABER study 24-hour hotline: 801-602-6523 or email: NABER@hsc.utah.edu.
2. Review, consent, and fax.
- If they choose to, the family may consent by signing the consent form.
- Fax the consent form to the University of Utah (fax: 801-585-7395 )
3. Enter clinical information, collect blood sample
- Click here to enter the patient’s deidentified clinical information using our REDCap data capture tool.
- Obtain a 1 mL blood sample in a EDTA (lavender-top) tube. For more information on the test click here.
- When you complete the online data entry, the website will generate a lab request form with important information on it. Include this form with the blood sample.
- Submit the blood sample to ARUP via your clinical laboratory just like any other send-out lab.
4. Results, questions, withdrawal
- Within 4-6 weeks the results of the 28-gene NGS panel will be reported back to the referring laboratory just like any other send-out lab.
- The identifying information will be deleted from the results of the panel and joined with the clinical data in the registry.
- If at anytime the patient’s family wishes to withdraw from the study, the family or their physician may contact the study team’s 24-hour hotline: 801-602-6523 or by email: NABER@hsc.utah.edu.
Robert D. Christensen, MD
Timothy M. Bahr, MS, MD
Vinod K. Bhutani, MBBS
Archana M. Agarwal, MD
Tracy I. George, MD