Welcome to the training on XALD: Newborn Screening, Treatment, and Referral provided by the Texas Health and Human Services Commission (HHSC) and the Texas Department of State Health Services (DSHS).
The goal of this tutorial is to equip birth facilities, Texas Health Steps providers, and other health professionals to screen newborns for X-linked adrenoleukodystrophy (XALD), communicate out-of-range screening results, and provide appropriate referrals and care coordination.
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 prevalence and effects of XALD and benefits of screening newborns for the disorder.
- Apply recommendations for responding to out-of-range results for XALD, including referrals, regular monitoring of symptoms, and communication with parents and caregivers.
Please note this module expires on 8/12/2022.
This module was released on 8/12/2019.
Continuing Medical Education
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 0.75 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 0.75 contact hour(s) of Continuing Nursing Education.
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 0.75 contact hour(s) of Continuing Social Work Education.
Certificate of Attendance
The Texas Department of State Health Services, Continuing Education Service has designated 0.75 hour(s) for attendance.
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 has the following relevant financial relationships to disclose:
- Lisa Emrick - Physician - Receives research support from Undiagnosed Diseases Network
- Lisa Emrick - Physician - Consultant for PTC Therapeutics AADC Deficiency
- Lisa Emrick - Physician - Editor at Neurometabolic Disorders Medlink Inc.
- 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).
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- ACT sheets. Health-care provider ACTion plans for X-ALD and other congenital disorders from the Texas Department of State Health Services.
- Brochure for parents, “10 Things Parents Want to Know About Newborn Screening,” from Texas Department of State Health Services.
- Case Management for Children and Pregnant Women program, Texas Department of State Health Services.
- Comprehensive Care Program from Texas Medicaid. For information, view the Children’s Services Handbook, Texas Medicaid and Healthcare Partnership.
- Early Childhood Intervention (ECI) Services, Texas Health and Human Services Commission.
- Engelen, M., Kemp, S., de Visser, M., van Geel, B. M., Wanders, R. J., Aubourg, P., & Poll-The, B. T. (2012). X-linked adrenoleukodystrophy (X-ALD): clinical presentation and guidelines for diagnosis, follow-up and management. Orphanet journal of rare diseases, 7, 51. doi:10.1186/1750-1172-7-51
- FACT sheets about X-ALD and other congenital disorders for parents, families, and caregivers from the Texas Department of State Health Services.
- Form to Refuse the Newborn Screening Blood Test in Texas from the Texas Department of State Health Services.
- Newborn Screening Benefits Program from the Texas Department of State Health Services.
- Newborn Screening Web Application enrollment forms from the Texas Department of State Health Services.
Implement best practices for collecting and handling specimens in a clinical setting as well as requirements for submitting specimens to the Texas Department of State Health Services.
Case Management Services in Texas
Integrate case management services to support patients and families dealing with special health-care needs or chronic conditions. Includes information about eligibility for Case Management for Children and Pregnant Women.
* Required course for MCO service coordinators. A certificate will be provided upon course completion.