NEWBORN SCREENING NEWS SUMMER 2012

Table of Contents

House Bill 411 Changes To Newborn Screening

Newborn Screening Remote Data Services

2012 Genetics Conference - Register NOW!

Newborn Screening Unit Has Moved!

Updated Brochures Available To Order/Download

Severe Combined Immunodeficiency To Be added To Texas Newborn Screening Panel

Genetics Webinar Series Offered By The American Academy of Pediatrics

Newborn Screening Advisory Committee Update

 

House Bill 411 Changes To Newborn Screening

Starting on June 1, 2012, under provisions of House Bill 411 (82nd Regular Session), Newborn Screening (NBS) healthcare providers are required to give parents the new Parent Information form and the Parental Decision for Storage and Use of Newborn Screening Blood Spot Cards form. Parents may complete the Decision form and return it to the healthcare provider or they may mail the form in at a later date.

The Decision form gives parents a way to allow or refuse long-term storage of their child’s dried blood spot card and possible use in public health research. Parents may choose “OK,” which allows the blood spots to be stored for up to 25 years and possibly used for de-identified public health research. Or, they may choose “NO”, and the blood spots will be destroyed within two years.

This new requirement replaces the need to distribute page two, the Disclosure/Directive to Destroy form of the 2010/2011 NBS kits. Healthcare providers are instructed to continue using the 2010/2011 kits through the kit expiration date. However, the Disclosure/Directive to Destroy form is not valid for any specimens collected on or after June 1, 2012, and should be replaced with the new Decision form. An 8½ x 11 version of the Decision form is available in English, Spanish and Vietnamese at http://www.dshs.state.tx.us/lab/nbsbloodspots.shtm. The 2012 NBS kits include the Decision form as page two.

Over the past few months, DSHS has provided announcements, presentations and webinars regarding this change. If you have questions, comments or if you would like to sign up for email list serve notices, please contact the NBS Laboratory at 1-888-963-7111 X7333 or 512-776-7333 or NewbornScreeningLab@dshs.state.tx.us

Newborn Screening Remote Data Services

Previously the NBS Voice Response System (VRS) provided 24-hour access to NBS lab results information. On September 1, 2012, the VRS will be de-activated. Approved healthcare providers can access NBS results 24/7 through the password protected Texas NBS Remote Data Services (RDS) web application.

To use RDS complete security application forms: http://www.dshs.state.tx.us/lab/nbsRDSforms.shtm
For Information and training on how to use RDS: http://www.dshs.state.tx.us/lab/nbsRDS.shtm
To sign up for NBS list serve email notices, contact the NBS Laboratory: NewbornScreeningLab@dshs.state.tx.us
Toll free: 1-888-963-7111 ext. 7333 or 512-776-7333.

2012 Genetics Conference - REGISTER NOW!

Tens of thousands of Texas babies are born each year with genetic disorders. Please join us for our 2012 Genetics Conference, Genetics: New Treatments, New Research, New Dilemmas. Texas DSHS Newborn Screening and Genetics Unit is working with health education contractor Cardea to offer this event at no cost to you including free CME, ethics CME and other CE.

    July 28: Austin, TX 
    August 4: San Antonio, TX 
    August 11: Dallas, TX

Who should attend?
Physicians,  nurses, nurse practitioners, PAs, CNMs, genetic counselors and others who may encounter patients with genetic disorders. Specialties include, but are not limited to: general/family practice, pediatrics, pediatric neurology, and OB/Gyn, Genetics.

Visit www.cardeaservices.org/training/events/e06_07-28gc.html for additional conference details and information on nursing and medical continuing education.
This activity has been approved for AMA PRA Category 1 CreditTM

Newborn Screening Unit Has Moved!

Due to renovation of the Moreton Building NBS has relocated to the Travis Building at 1701 Congress Ave. The phone and mailing address remains the same.

PO Box 149347 MC 1918
Austin TX 78714-9347
512-776-3957

Severe Combined Immunodeficiency To Be Added To Texas Newborn Screening Panel

Severe Combined Immunodeficiency (SCID) is a group of genetic disorders caused by profound defects in the immune system, the body’s defense against infections.  The “Bubble Boy” is an example of a child with SCID who lived inside a bubble-shaped sterile environment for 12 years.

Babies born with SCID appear normal and most are not diagnosed until severe infections begin around six months of age. Infants with SCID have failure to thrive, persistent diarrhea, and frequent life-threatening infections. Without early diagnosis and treatment, most infants with SCID die within their first year.

Based on data from other states, approximately 10 infants in Texas will be born with SCID each year. Abnormal SCID screening results will be reported to the NBS Program Clinical Care Coordination group, who will contact the child’s primary care provider (PCP) and provide instructions on immediate steps to take.  The instructions will also include information for the PCP to share with parents, and a list of immunologists in their region.

The immunologists treating the infant will run additional assessments. If confirmed, SCID is considered a pediatric emergency and treatments such as a bone marrow transplant will be scheduled as soon as possible.  Speed is essential, and adding SCID to the Texas NBS panel will save infants’ lives.

Updated Brochures Available To Order/Download

Three NBS brochures have been updated and are available to download or order from the NBS Program at:
https://www.dshs.state.tx.us/newborn/pubs.shtm

10 Things Parents Want to Know about Newborn Screening
(#1-321 English & Spanish in one)
What Parents Want to Know about Newborn Screening From Their Baby’s Health Care Professional (English #1-310 & Spanish #1-319A)
Save Your Babies! Newborn Screening Saves Lives –The Prenatal Provider’s Role in Newborn Screening (#1-329 English)

Genetics Webinar Series Offered By The American Academy Of Pediatrics

www.medicalhomeinfo.org/gpci.aspx#webinar 

Newborn Screening Advisory Committee Update

The Newborn Screening (NBS) Advisory Committee guides the Texas Department of State Health Services (DSHS) on strategic planning, policy, rules and services related to NBS and testing.  Committee members are appointed by the DSHS Commissioner.

Formation of the Committee, also known as “Greyson’s Law” in memory of Greyson Morris, was mandated by House Bill (HB) 1795, 81st Texas Legislature (2009). The Committee has nine members including: health care providers, a hospital representative, persons who have a family member affected by a condition for which newborn screening is or may be required, and persons involved in the delivery of newborn screening services, follow-up, or treatment.

The Committee meets at least three times annually, once in person. At the April 2012 conference call, the results of the Severe Immune Deficiency (SCID) Pilot Project and statewide implementation of screening for SCID were discussed. Members also provided input and recommendations to proposed revisions to Texas Administrative Code §37.51-37.65 that governs the NBS Program.
Three Committee positions became vacant in April. DSHS solicited applications and received twelve from highly qualified candidates. The review process is underway and an announcement will be made by mid-summer. For more information contact:

John Waara - Advisory Committee Support Staff
John.Waara@dshs.state.tx.us
512-776-2600
NBS Advisory Committee: www.dshs.state.tx.us/newborn/advisory.aspx

Alex Fisher - Newsletter Editor 
Alex.Fisher@dshs.state.tx.us
512-776-6449
Fax 512-776-7125 

Last updated October 5, 2012