Welcome to the training on Newborn Screening provided by the Texas Health and Human Services Commission (HHSC) and the Texas Department of State Health Services (DSHS).
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:
- Summarize the timeframe in which newborn screening must be conducted and the broad categories of health disorders covered by the screenings.
- Specify procedures that ensure satisfactory collection and handling of newborn dried blood spot specimens and avoid delay in receiving results.
- Employ the information sheets about each screened disorder that are available both for health-care professionals and for parents or caregivers.
- 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
Continuing Medical Education
This activity has been planned and implemented with the accreditation requirements and policies of the Texas Medical Association (TMA) through the joint providership of the Texas Department of State Health Services Continuing Education Service and Texas Council of Community Centers. The Texas Department of State Health Services, Continuing Education Service is accredited by the Texas Medical Association to provide continuing medical education for physicians.
The Texas Department of State Health Services, Continuing Education Service designates this enduring material for a maximum of 1.25 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
Continuing Nursing Education
The Texas Department of State Health Services, Continuing Education Service is accredited as a provider of continuing nursing education by the American Nurses Credentialing Center’s Commission on Accreditation. The Texas Department of State Health Services, Continuing Education Service has awarded 1.25 contact hour(s) of Continuing Nursing Education.
Social Workers
The Texas Department of State Health Services, Continuing Education Service under sponsor number CS3065 has been approved by the Texas State Board of Social Worker Examiners to offer continuing education contact hours to social workers. The approved status of The Texas Department of State Health Services, Continuing Education Service expires annually on December 31. The Texas Department of State Health Services, Continuing Education Service has awarded 1.25 contact hour(s) of Continuing Social Work Education.
Certified Community Health Worker
The Texas Department of State Health Services, Promotor(a)/Community Health Worker Training and Certification Program has certified this course for 1.25 contact hour(s) of continuing education for Certified Community Health Workers and Community Health Worker Instructors.
Certificate of Attendance
The Texas Department of State Health Services, Continuing Education Service has designated 1.25 hour(s) for attendance.
Disclosures
One of the requirements of continuing education is disclosure of the following information to the learner:
- Notice of requirements for successful completion of continuing education activity. To receive continuing education credit the learner must successfully complete the following activities:
- Create a Texas Health Steps account.
- Complete on-line registration process.
- Thoroughly read the content of the module.
- Complete the on-line examination.
- Complete the evaluation.
- Commercial Support.
The THSTEPS Web-based Continuing Education Series has received no commercial support. - Disclosure of Relevant Financial Relationships.
The THSTEPS Continuing Education Planning Committee and the authors of these modules have no relevant financial relationships to disclose. - Non-Endorsement Statement.
Accredited status does not imply endorsement of any commercial products or services by the Department of State Health Services, Continuing Education Service; Texas Medical Association; or American Nurse Credentialing Center. - Off-Label Use.
Using a disclosure review process, the THSTEPS Continuing Education Planning Committee has examined documents and has concluded that the authors of these modules have not included content that discusses off-label use (use of products for a purpose other than that for which they were approved by the Food and Drug Administration).
The following are policies and definitions of terms related to continuing education disclosure:
The intent of disclosure is to allow Department of State Health Services (DSHS) Continuing Education Service the opportunity to resolve any potential conflicts of interest to assure balance, independence, objectivity and scientific rigor in all of its Continuing Education activities.
All faculty, planners, speakers and authors of Department of State Health Services (DSHS) Continuing Education Service sponsored activities are expected to disclose to the Department of State Health Services (DSHS) Continuing Education Service any relevant financial, relationships with any commercial or personal interest that produces health care goods or services concerned with the content of an educational presentation. Faculty, planners, speakers and authors must also disclose where there are any other potentially biasing relationships of a professional or personal nature.
Glossary of Terms
Conflict of Interest: Circumstances create a conflict of interest when an individual has an opportunity to affect Continuing Education content about products or services of a commercial interest with which she/he has a financial relationship or where there are any other potentially biasing relationships of a professional or personal nature.
Commercial Interest: Any entity producing, marketing, re-selling, or distributing health care goods or services consumed by, or used on, patients.
Financial Relationships: Those relationships in which the individual benefits by receiving a salary, royalty, intellectual property rights, consulting fee, honoraria, ownership interest (e.g., stocks, stock options or other ownership interest, excluding diversified mutual funds), or other financial benefit. Financial benefits are usually associated with roles such as employment, management position, independent contractor (including contracted research), consulting, teaching, membership on advisory committees or review panels, board membership, and other activities for which remuneration is received or expected. Relevant financial relationships would include those within the past 12 months of the person involved in the activity and a spouse or partner. Relevant financial relationships of your spouse or partner are those of which you are aware at the time of this disclosure.
Off Label: Using products for a purpose other that that for which it was approved by the Food and Drug Administration (FDA).
Browser Requirements
Texas Health Steps courses are best viewed using a current browser. If you are using an out-of-date browser or a version of Internet Explorer less than 11, lesson progress and interactive features may not function properly.
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.
- Email: NewbornScreeningLab@dshs.state.tx.us
- Phone: 888-963-7111, Ext. 7333, Monday through Friday, 8 a.m. to 5 p.m. Central Time.
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) 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.
- Benefits:
- 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.
American Congress of Obstetricians and Gynecologists, Committee on Genetics. (2018). Committee Opinion No. 616: Newborn Screening and the Role of the Obstetrician-Gynecologist.
Baby’s First Test. (2018). Newborn Screening 101.
Botkin JR, Rothwell E, Anderson RA, Rose NC, Dolan SM, Kuppermann M, Stark LA, Goldenberg A, Wong B. Prenatal Education of Parents About Newborn Screening and Residual Dried Blood Spots: A Randomized Clinical Trial. JAMA Pediatr. 2016 Jun 1;170(6):543-9. doi: 10.1001/jamapediatrics.2015.4850.
Botkin JR, Rothwell E, Anderson R, Stark LA, Mitchell J. Public attitudes regarding the use of electronic health information and residual clinical tissues for research. J Community Genet. 2014 Jul;5(3):205-13. doi: 10.1007/s12687-013-0175-8. Epub 2013 Dec 5.
DeLuca JM. Public Attitudes Toward Expanded Newborn Screening. J Pediatr Nurs. 2018 Jan - Feb;38:e19-e23. doi: 10.1016/j.pedn.2017.10.002. Epub 2017 Oct 13.
- March of Dimes: A Parent’s Guide to Newborn Screening video (English)
- March of Dimes: A Parent’s Guide to Newborn Screening video (Español)
- Texas Department of State Health Services, Newborn Screening guides and other publications for families. Available in English, Spanish, and Vietnamese.
- 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.
- Texas Department of State Health Services, Parent FACT sheets for 29 core conditions screened through blood spots in Texas. Parent FACT sheets for an additional 24 secondary conditions.
- Texas Department of State Health Services Newborn Screening. Resources for Parents.
- Texas Department of State Health Services. Texas Health Steps, information about preventive medical checkups, finding a health-care provider, and getting a ride to a checkup.
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.
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