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a9bMf9dnIptWDcLK92sZo4fo5xwoicJAyw8SiN4cKQtZd3b9QJ9PGSh6IBFcJg

The Neonatal Acute Bilirubin Encephalopathy Registry

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Welcome to the Neonatal Acute Bilirubin Encephalopathy Registry (NABER)

The goal of this project is to administer a voluntary registry of neonates with acute bilirubin encephalopathy (ABE) in the USA over a 36-month period (January 2019 - December 2021). We are willing to provide our novel, CLIA-certified, Next Generation Sequencing panel testing and interpretation to any neonate with ABE in the USA during this 36-month period free of charge.

To qualify for our registry an infant must meet the following criteria in the first 14 days of life:
(1) Total serum bilirubin ≥28 mg/dL and/or undergoing exhange transfusion for hyperbilirubinemia
(2) Bilirubin Induced Neurological Dysfunction (BIND) score ≥4 (scoring will be validated within this tool).

More detailed information: https://www.kernicterus-registry.org

To enroll a patient, their parent must first provide consent using this form

At the conclusion of data entry, instructions will be provided on how to submit a whole blood sample to ARUP laboratories for analysis with our 28-gene sequencing panel free of charge.

This registry is being conducted by investigators at the University of Utah and has been approved by the IRB at that institution.

Questions or comments: tim.bahr@hsc.utah.edu or contact our 24-hour hotline: 801-602-6523.

Patient Last Name

* must provide value

Patient First Name

* must provide value

Patient Date and Time of Birth

* must provide value

M-D-Y H:M

Physician Name

* must provide value

Physician phone number

* must provide value

Physician email

* must provide value

Please enter the email address of the referring physician. This email will be used for to follow up on MRI and BAER results 3 weeks from enrollment

* must provide value

State in which the infant was born

* must provide value

Birthweight in grams

* must provide value

Gender

Male

Female

Ambiguous

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Gestational Age at Birth

* must provide value

Ethnicity

* must provide value

Describe the patient's ethnicity

Maternal blood type

* must provide value

Maternal antibody screen

* must provide value

Infant blood type

* must provide value

Direct Antiglobulin Test (DAT; a.k.a Direct Coombs Test)

* must provide value

Please describe the results of the positive DAT

* must provide value

Maximum total bilirubin (in mg/dL)

* must provide value

Age (in hours) at time of maximum total serum bilirubin

or Date and Time of maximum total serum bilirubin (TSB)

M-D-Y H:M

Calculated hours of life (if date and time entered):

View equation

If the bilirubin was fractionated, enter the direct component here.

If the patient had a serum albumin obtained, enter here.

Has the child received an exchange transfusion?

* must provide value

Yes

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Approximately how many hours old was the infant when the exchange transfusion was begun?

or Date and Time of maximum total serum bilirubin (TSB)

M-D-Y H:M

Was the infant treated for an infection?

* must provide value

Yes

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Was there a positive culture or another test confirming infection (e.g. PCR based test)?

* must provide value

Yes

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Please describe the culture results

* must provide value

Length of planned or completed antibiotic treatment (in days)

* must provide value

(0) Normal

(1) High-Pitched

(2) Piercing, shrill, frequently decreased or increased

(3) Inconsolable or cries only with stimulation

Cry Pattern

* must provide value

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(0) Normal

(1) Sleepy, poor feeding

(2) Lethargy, very poor feeding, irritable

(3) Semi-coma, intermittent apnea, seizures

Behavior and Mental Status

* must provide value

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(0) Normal

(1) Variable Hypotonia

(2) Moderate hyper or hypotonia, posturing, bicycling, nuchal or truncal arching

(3) Severe hyper or hypotonia, opsithotonus, fever

Muscle Tone

* must provide value

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Has brain MRI been complete yet?

* must provide value

Yes

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Please describe the MRI results.

* must provide value

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Has the infant's hearing been tested?

* must provide value

Yes

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Please select the modality of testing.

* must provide value

What modality was used to test the infant's hearing?

* must provide value

What were the results of the hearing test?

* must provide value

Normal

Abnormal

Indeterminate

reset

Comments or other notes:

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