CE Credit

Newborn Screening

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Welcome to the training on Newborn Screening provided by Texas Health and Human Services (HHS) and the Texas Department of State Health Services (DSHS).

Credit hours: 1.25 CE

Goal

The goal of this module is to equip Texas Health Steps providers and other interested health-care professionals to participate in the state’s newborn screening program, and once screening is performed to correctly interpret and act upon the results, educate parents, and provide appropriate follow-up and referral when necessary.

Target Audience

Texas Health Steps providers and other interested health-care professionals.

Specific Learning Objectives

After completing the activities of this module, you will be able to:

  1. Summarize the timeframe in which newborn screening must be conducted and the broad categories of health disorders covered by the screenings.
  2. Specify procedures that ensure satisfactory collection and handling of newborn dried blood spot specimens and avoid delay in receiving results.
  3. Employ the information sheets about each screened disorder that are available both for health-care professionals and for parents or caregivers.
  4. Evaluate how to communicate with parents about positive newborn screening results, follow-up testing, and available services. 

Please note this module expires on 6/12/2022.

This module was released on 6/12/2019.

Accreditation Statement

Disclosures

Section 1 – Health-Care Providers’ Responsibilities for Newborn Screening

Callier Center for Communication Disorders. The University of Texas at Dallas. A website providing educational materials for families of infants and young children who are deaf or hard of hearing.

Clinical and Laboratory Standards Institute Blood Collection on Filter Paper for Newborn Screening Programs.

Early Hearing Detections & Intervention – Pediatric Audiology Links to Services (EHDI-PALS)  website provides links to information, resources, and services for children with hearing loss. At the heart of EHDI-PALS is a national web-based directory of facilities that offer pediatric audiology services to children who are younger than five years of age. EHDI- PALS is a project of the CDC.

Health Resources and Services Administration Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) provides advice, recommendations, and technical information about aspects of heritable disorders and newborn and childhood screening to the Secretary of Health and Human Services.  

Health Resources and Services Administration Recommended Uniform Screening Panel is a list of disorders the Secretary of the Department of Health and Human Services (HHS) recommends for states to screen as part of their state universal newborn screen (NBS) programs.

Texas Department of State Health Services (DSHS) Assumptions Underlying Audiologic Evaluations of Newborns and infants.

Texas Department of State Health Services (DSHS) Audiologic Evaluation Protocol.

Texas Department of State Health Services (DSHS) Critical Congenital Heart Disease contact information for reporting conditions.

Fax completed CCHD forms to DSHS at 512-776-7593, Attention: CCHD Program.
The forms also can be mailed to DSHS at: 

Attention: CCHD Program 
DSHS Newborn Screening Genetics Branch 
P.O. Box 149347, MC 1918  
Austin, Texas 78714-9347 

Texas Department of State Health Services (DSHS) Critical Congenital Heart Disease FAQ web page.

Texas Department of State Health Services (DSHS) Newborn Hearing Screening Additional Information.

Texas Department of State Health Services (DSHS) Newborn Hearing Screening Frequently Asked Questions.

Texas Department of State Health Services (DSHS) Newborn Screening web page.

Texas Department of State Health Services (DSHS) Newborn Screening: All Texas Newborns Are Screened for These Disorders web page provides information about the core and secondary conditions screened in newborns as well as Critical Congenital Heart Disease (CCHD) and Newborn Hearing Screening. 

Texas Department of State Health Services (DSHS) Newborn Screening Clinical Care web page containing comprehensive provider information.

Texas Department of State Health Services (DSHS) Newborn Screening Clinical Care Coordination Publications Order Form page offers downloadable literature such as “These Tests Could Save Your Baby’s Life,” (in English and Spanish) for parents, and “Save Your Babies,” for primary care providers.

Texas Department of State Health Services (DSHS) Laboratory Testing Services Manual page includes a link to the Order Form for Newborn Screening Supplies (G-6D).

Texas Department of State Health Services (DSHS) Texas Newborn Screening Laboratory website and contact information.

Texas Department of State Health Services (DSHS) “Parental Decision for Storage and Use of Newborn Screening Blood Spot Cards”  form allows parents and guardians to opt in or opt out of long-term storage of their baby’s blood spots and possible public health research outside of DSHS. The form is available in English, Spanish and Vietnamese.

Texas Department of State Health Services (DSHS) Texas Early Hearing Detection and Intervention (TEHDI) Program

Texas Department of State Health Services (DSHS) Texas Health Steps Anticipatory Guidance–A Guide for Providers

Texas Department of State Health Services (DSHS) Texas Pulse Oximetry Project (TXPOP) CCHD Toolkit.

Texas Health Steps Child Health Clinical Records Forms.

Section 2: Specimen Collection and Submission Procedures

Adobe Reader 8 or higher and an Internet connection along with being an authorized user of the Newborn Screening Web Application provides immediate access to newborn screening result reports. To obtain authorization to access the system, complete and submit a Facility Security Agreement for each facility and a Web User Access Agreement form for each user. Forms are available on the Newborn Screening Remote Data Services Forms web page. 

Baby’s First Test is a national clearinghouse that provides information on available additional (supplemental) screening.

Texas Department of State Health Services (DSHS) Newborn Screening - Healthcare Provider Resources web page contains annotated examples of confidential laboratory reports for Normal and Abnormal screenings, as well as an example of Unsatisfactory Specimens report in the section titled Result Reports and Remote Data Systems. See the fourth bullet item, Result Report Examples, to download an example of each report.

Texas Department of State Health Services (DSHS) Newborn Screening - Healthcare Provider Resources web page provides a link to your Newborn Screening Report Card allowing you to review your facility’s transit times and other newborn screening performance measures on a monthly basis.

Texas Department of State Health Services (DSHS) Newborn Screening Unsatisfactory Specimen Examples  web page provides links to examples of unsatisfactory blood spots that you can examine and download along with Tips to Avoid various problems. 

Texas Department of State Health Services (DSHS) Order Form for Newborn Screening Supplies. Do not share or exchange kits with other facilities, because DSHS associates all kits with the ordering facility. For additional information about the specimen collection kits, contact DSHS Laboratory Supply at 512-776-7661 from 7:30 a.m. to 4:30 p.m. Central Time, Monday through Friday, or fax 512-776-7672.

Texas Department of State Health Services (DSHS) Weight Conversion Chart – Pounds and Ounces to Grams.  

Texas Newborn Screening Blood Specimen Collection, a five-minute video produced by the Texas Department of State Health Services and the Texas Health and Human Services Commission that further details how to correctly collect and prepare samples for a newborn screening.

Texas Newborn Screening Collection Kit Completion, a six-minute video produced by the Texas Department of State Health Services and the Texas Health and Human Services Commission details how to complete the newborn screening bloodspot collection.

Texas Newborn Screening Collection Kit Submission, a five-minute video produced by the Texas Department of State Health Services and the Texas Health and Human Services Commission that explains how to handle specimens after they are collected and best practices to meet the 24-hour submission deadline.

Section 3: The Blood Spot Screenings

Texas Department of State Health Services (DSHS) informational ACT Sheets for core conditions are available for providers. Visit the Secondary Conditions of the Recommended Uniform Screening Panel for more information on secondary conditions and informational 

Texas Department of State Health Services (DSHS) parent and caregiver FACT Sheets (many available in English and Spanish). Visit the FACT sheets for core conditions screened through blood spots in Texas and the FACT sheets for additional secondary conditions.

Section 4: Involving the Parents

American Academy of Pediatrics, Newborn Screening Authoring Committee. Newborn Screening Expands: Recommendations for Pediatricians and Medical Homes—Implications for the System.

American College of Obstetricians and Gynecologists. Newborn screening. Patient Fact Sheet PFS006. Washington, DC: American College of Obstetricians and Gynecologists; 2014. Available at: https://www.acog.org/Patients/FAQs/Newborn-Screening-Tests
Retrieved March 11, 2019.

American College of Obstetricians and Gynecologists. Seven things parents want to know about newborn screening. Available at: http://www.acog.org/~/media/Department%20Publications/nbs7Things.pdf. Retrieved March 4, 2019.

Baby’s First Test. Available at: http://www.babysfirsttest.org. Retrieved March 4, 2019.

March of Dimes: A Parent’s Guide to Newborn Screening video (English)

March of Dimes: A Parent’s Guide to Newborn Screening video (Español)

March of Dimes. Newborn Screening Tests for Your Baby. Available at: https://www.marchofdimes.org/baby/newborn-screening-tests-for-your-baby.aspx. Retrieved March 4, 2019.

National Newborn Screening and Global Resource Center. Available at: https://genes-r-us.uthscsa.edu Retrieved March 3, 2019.

Parent Companion First Five Years, a bilingual website focusing on young children with disabilities. It was created to comfort, inspire, and connect parents to helpful disability resources.

Saved Babies Through Screening Foundation. Available at http://www.savebabies.org/ Retrieved March 4, 2019. 

Texas Department of State Health Services (DSHS) 10 Things Parents Want to Know About Newborn Screening. Available in English and Spanish at https://www.dshs.state.tx.us/newborn/pubs.shtm Retrieved March 4, 2019.

Texas Department of State Health Services (DSHS) Form to Refuse the Newborn Screening Blood Test may be used by parents who wish to refuse newborn screening because it conflicts with their religious tenets or practices. Available in English and Spanish.

Texas Department of State Health Services (DSHS) More Than Drops On a Card  (5-minute video) features two Texas families. They share their stories of the importance of collecting timely, good quality specimens.

Texas Department of State Health Services (DSHS) Newborn Screening Clinical Care Coordination Publications Order Form web page provides links to numerous pamphlets—some of which are also available in Spanish and Vietnamese—including the following helpful items.

  • Newborn Screening Tests: For Your Baby’s Health (available in English, Spanish and Vietnamese).
  • These Tests Could Save your Baby’s Life (available in English and Spanish).
  • Parents Want to Know About Newborn Screening (available in English, Spanish and Vietnamese).

Section 5: Newborn Screening Follow-Up Program

Adobe Reader 8 or higher and an Internet connection along with being an authorized user of the Newborn Screening Web Application provides immediate access to newborn screening result reports. To obtain authorization to access the system, complete and submit a Facility Security Agreement for each facility and a Web User Access Agreement form for each user. Forms are available on the Newborn Screening Remote Data Services Forms page. 

American Academy of Pediatrics (AAP) Newborn Screening web page provides resources to promote comprehensive care through medical homes for children born with rare inherited disorders diagnosed through newborn screening. 

Texas Department of State Health Services (DSHS) Case Management for Children and Pregnant Women web page provides a short video on their services and other helpful resources.

Texas Department of State Health Services (DSHS) Children with Special Health Care Needs (CSHCN) Services Program provides services to children with extraordinary medical needs, disabilities, and chronic health disorders. 

Texas Department of State Health Services (DSHS) Newborn Screening - Healthcare Provider Resources page contains annotated examples of confidential laboratory reports for Normal and Abnormal screenings, as well as an example of Unsatisfactory Specimens report in the section titled Result Reports and Remote Data Systems. See the fourth bullet item, Result Report Examples, to download an example of each report.

Texas Department of State Health Services (DSHS) Newborn Screening Advisory Committee 

Texas Department of State Health Services (DSHS) Newborn Screening Program Benefits web page provides more information about the benefits program and a link to download the Contractor Manual. 

Texas Department of State Health Services (DSHS) resources for providers:

  • Electronic notification (email ListServ). Sign up online or call 800-252-8023, ext. 2600.
    • Benefits: 
      • Receive “URGENT” notifications.
      • Link to material for more extensive information.
      • Forward information to other relevant staff.
      • Subscribe and Unsubscribe capability.
      • Contact information is NOT shared with any third party.
      • All links on the service are secured through the DSHS website. 
  • Click the links below to go to the DSHS Newborn Screening websites: 

Texas Health and Human Services Children’s Health Insurance Program (CHIP) website describes low cost or free health coverage for children who qualify in Texas.

Texas Health and Human Services Commission (HHSC) Early Childhood Intervention Services web page provides a video and information about the statewide program for families with children birth up to age 3 with developmental delays, disabilities or certain medical diagnoses that may impact development.

Texas Medicaid & Healthcare Partnership Newborns Comprehensive Care Program (CCP)

Texas Newborn Screening Follow-Up, a four-minute video produced by the Texas Department of State Health Services and the Texas Health and Human Services Commission explains steps taken by Newborn Screening follow-up staff after an abnormal screening result. The video provides tips for timely intervention and shows how you can help achieve prompt clinical care coordination for babies with abnormal screening results.

The medical definitions provided in this module were adapted or obtained from American Family Physician, Medline Plus, and the U.S. National Library of Medicine.