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Newborn Screening:
Because you touch the future everyday
Purpose of Newborn Screening
 Screens for congenital and heritable disorders
 These disorders may cause severe mental
retardation, illness, or death if not treated
early in life
 If treated, infants may live relatively normal
lives
 Results in savings in medical costs over time
If Untreated, Disorders
 Can result in:
 Growth problems
 Developmental delays
 Behavioral/emotional problems
 Deafness or blindness
 Retardation
 Seizures
 Coma, sometimes leading to death
Texas Newborn Screening Facts
 Texas has been screening newborns since late 1963,
pilot & beta testing done. It was required by law in
1965.
 PKU was first test available by using dried blood
spot. Texas now tests for 27 disorders.
 All disorders are autosomal recessive disorders
except Congenital Hypothyroid.
 CH has higher incidence in Hispanic females.
Nationwide rate 1: 3,500; Texas rate 1:1,800
Texas Facts Continued
 Texas is 1 of 8 states currently requiring 2
NBS tests. Many states recommend 2nd
NBS.
NBS Program identifies about 10% of
diagnosed cases on 2nd
NBS.
 DSHS Lab processes 3000- 3.500 specimens
per day.
Changes in NBS Program
 Lab and Case Management have gone to 6
day work week. Only “Panic Codes” will be
called out on Saturdays
 DSHS Regional staff increased to assist in
locating hard to find infants and referring to
additional programs
 Lab using mailbox to speed up delivery of
specimens
Abnormal/Normal Results
 Normal results: Mailer will be sent out by
regular postal service. Typically received in
submitting facility in 10 working days
 Abnormal results: Health care provider
notified as soon as result is available and
provider is located.
 Web Based system: NBS results available
online when NBS completed-approx. 5
working days after receipt of specimen.
Abnormal Specimen
 Case Management will send:
 Lab results for that disorder
 ACT sheet specific to that disorder
 FACT sheet for families
 List of Specialists
Abnormal Results
for each disorder
 Panic Codes
 are reported to RN in NBS Case Management
 RN will notify MD ASAP. If MD unavailable RN
will notify mother
 Abnormal Codes
 Health Tech will notify MD or facility
 Mother notified by letter
Estimated Expansion Statistics
 Approximately 412,000 births a year
 Approximately 800,000 specimens a year
collected
 Follow-up on approximately 15,000 abnormal
screens a year
 Approximately 620 diagnosed cases per year
Program will also identify about 300
secondary target disorders.
Sickle Cell Trait
 Newborn Screening Program began notifying
parents of Sickle Cell Trait in December
2007.
 Program will identify approximately 10,000
infants with Sickle Cell Trait per year.
 Significance of Trait may need to be
explained to parent.
Things Parents Should Know after
Abnormal Screen
 This is a screen. There are presumptive positives &
false negatives
 The newborn screen is designed to detect babies at
risk before they have signs and symptoms
 Early detection and treatment results in prevention of
irreversible complications
 There is often no family history. Siblings may not
have history of any screened disorders
Criteria for screened disorders
 Disorder occurs with significant frequency
 Test are inexpensive and reliable
 Effective treatment/intervention exists
 If untreated, baby may die or develop severe
retardation
 Affected baby may appear normal at birth
 American College of Medical Genetics
guidelines
Texas babies are mandated to have
2 newborn screens
 The first screen at 24-48 hours or before
leaving hospital, whichever is first
 The second screen at 1-2 weeks of age
 Premature and low weight babies are
required to have screens in same time frame
 Take first screen before transfusion
This tear off sheet goes to parent:
To remind them to get #2 screen
To give to pediatrician
D
r
W
i
l
l
b
e
a
b
l
e
Doctor will be able to call into Lab’s
Voice Response System or online data
system to access results of 1st
screen.
Forms ask for (in military
time):
• Time of birth
• Time of collection
Circle #3 if any previous screen was abnormal.
Enter DSHS Lab # if possible.
No additional blood
spots required.
MEDICAID vs PAID
 Use Medicaid Collection Card if:
 Mother is on Medicaid
 Medicaid is pending
 Charity
 You do not know if mother is on Medicaid
“UNSAT”: THE TOP 5
#5
 Do not use Expired Forms
 Check Form Serial #
 Rotate stock
 Order new forms before old forms expire
 Destroy expired MEDICAID forms
 Send expired PAID forms back to DSHS lab for
credit
 WILL NOT BE ABLE TO ACCEPT WRONG
YEAR ON CARD
#4
 Avoid Contaminants
 Waste first drop of blood
 Do not touch filter paper
 Dry flat 3-4 hours
 Do not put in plastic bag
Common Contaminants
 EDTA
 Do not use purple capped tubes
 Be careful of hand lotion
 Fingerprints will leave amino acids
 Alcohol
 Wipe dry after cleaning
#3
 Mail specimen within 24 hours
 Do Not Batch
 Eliminate unnecessary Stops
 If someone is on vacation- assign to someone else
#2
 Date of Collection
 Specimen cannot be processed without date of
collection
 Do not punch or cover up barcodes
 Date of Birth/time of birth
 Other Demographic information is Important
Mother’s name, address
good phone # for to call if abnormal
Get MD’s name if possible
#1
 Get a good Blood Spot!
 Use proper lancet: approx 2.0mm
 Must soak through to other side of filter paper
 Get a good blood spot before moving onto the
next spot
 Do not scratch or abrade paper
 Call the Lab for questions or problems
Newborn Hearing Screening
 Hearing screening program
 Performed at birth facilities
 Follow up by audiologists
 Referred to Early Childhood Intervention
if hearing loss is found
 About 3 babies per 1000 are born with
hearing loss
Resources Available for Parents
 Newborn Screening Pamphlets may be
ordered online. Available in English, Spanish
& Vietnamese and are provided free of
charge. Please call or e-mail NBS Program if
other language is needed.
 March of Dimes Video available in English
and Spanish.
 NBS Website.
Resources for Providers
 NBS Pamphlets
 Collection and Newborn Screening Program Video
 Collection posters
 NBS Newsletter
 NBS website
 Power Point presentations on Collection
 Online Provider Education
 On-site In-Services
http://www.dshs.state.tx.us/newborn/default.shtm
THE END

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Nbsslide

  • 1. Newborn Screening: Because you touch the future everyday
  • 2. Purpose of Newborn Screening  Screens for congenital and heritable disorders  These disorders may cause severe mental retardation, illness, or death if not treated early in life  If treated, infants may live relatively normal lives  Results in savings in medical costs over time
  • 3. If Untreated, Disorders  Can result in:  Growth problems  Developmental delays  Behavioral/emotional problems  Deafness or blindness  Retardation  Seizures  Coma, sometimes leading to death
  • 4. Texas Newborn Screening Facts  Texas has been screening newborns since late 1963, pilot & beta testing done. It was required by law in 1965.  PKU was first test available by using dried blood spot. Texas now tests for 27 disorders.  All disorders are autosomal recessive disorders except Congenital Hypothyroid.  CH has higher incidence in Hispanic females. Nationwide rate 1: 3,500; Texas rate 1:1,800
  • 5. Texas Facts Continued  Texas is 1 of 8 states currently requiring 2 NBS tests. Many states recommend 2nd NBS. NBS Program identifies about 10% of diagnosed cases on 2nd NBS.  DSHS Lab processes 3000- 3.500 specimens per day.
  • 6. Changes in NBS Program  Lab and Case Management have gone to 6 day work week. Only “Panic Codes” will be called out on Saturdays  DSHS Regional staff increased to assist in locating hard to find infants and referring to additional programs  Lab using mailbox to speed up delivery of specimens
  • 7. Abnormal/Normal Results  Normal results: Mailer will be sent out by regular postal service. Typically received in submitting facility in 10 working days  Abnormal results: Health care provider notified as soon as result is available and provider is located.  Web Based system: NBS results available online when NBS completed-approx. 5 working days after receipt of specimen.
  • 8.
  • 9.
  • 10. Abnormal Specimen  Case Management will send:  Lab results for that disorder  ACT sheet specific to that disorder  FACT sheet for families  List of Specialists
  • 11. Abnormal Results for each disorder  Panic Codes  are reported to RN in NBS Case Management  RN will notify MD ASAP. If MD unavailable RN will notify mother  Abnormal Codes  Health Tech will notify MD or facility  Mother notified by letter
  • 12.
  • 13.
  • 14. Estimated Expansion Statistics  Approximately 412,000 births a year  Approximately 800,000 specimens a year collected  Follow-up on approximately 15,000 abnormal screens a year  Approximately 620 diagnosed cases per year Program will also identify about 300 secondary target disorders.
  • 15. Sickle Cell Trait  Newborn Screening Program began notifying parents of Sickle Cell Trait in December 2007.  Program will identify approximately 10,000 infants with Sickle Cell Trait per year.  Significance of Trait may need to be explained to parent.
  • 16. Things Parents Should Know after Abnormal Screen  This is a screen. There are presumptive positives & false negatives  The newborn screen is designed to detect babies at risk before they have signs and symptoms  Early detection and treatment results in prevention of irreversible complications  There is often no family history. Siblings may not have history of any screened disorders
  • 17. Criteria for screened disorders  Disorder occurs with significant frequency  Test are inexpensive and reliable  Effective treatment/intervention exists  If untreated, baby may die or develop severe retardation  Affected baby may appear normal at birth  American College of Medical Genetics guidelines
  • 18. Texas babies are mandated to have 2 newborn screens  The first screen at 24-48 hours or before leaving hospital, whichever is first  The second screen at 1-2 weeks of age  Premature and low weight babies are required to have screens in same time frame  Take first screen before transfusion
  • 19. This tear off sheet goes to parent: To remind them to get #2 screen To give to pediatrician
  • 20. D r W i l l b e a b l e Doctor will be able to call into Lab’s Voice Response System or online data system to access results of 1st screen.
  • 21. Forms ask for (in military time): • Time of birth • Time of collection
  • 22. Circle #3 if any previous screen was abnormal. Enter DSHS Lab # if possible.
  • 24.
  • 25. MEDICAID vs PAID  Use Medicaid Collection Card if:  Mother is on Medicaid  Medicaid is pending  Charity  You do not know if mother is on Medicaid
  • 27. #5  Do not use Expired Forms  Check Form Serial #  Rotate stock  Order new forms before old forms expire  Destroy expired MEDICAID forms  Send expired PAID forms back to DSHS lab for credit  WILL NOT BE ABLE TO ACCEPT WRONG YEAR ON CARD
  • 28. #4  Avoid Contaminants  Waste first drop of blood  Do not touch filter paper  Dry flat 3-4 hours  Do not put in plastic bag
  • 29. Common Contaminants  EDTA  Do not use purple capped tubes  Be careful of hand lotion  Fingerprints will leave amino acids  Alcohol  Wipe dry after cleaning
  • 30. #3  Mail specimen within 24 hours  Do Not Batch  Eliminate unnecessary Stops  If someone is on vacation- assign to someone else
  • 31. #2  Date of Collection  Specimen cannot be processed without date of collection  Do not punch or cover up barcodes  Date of Birth/time of birth  Other Demographic information is Important Mother’s name, address good phone # for to call if abnormal Get MD’s name if possible
  • 32. #1  Get a good Blood Spot!  Use proper lancet: approx 2.0mm  Must soak through to other side of filter paper  Get a good blood spot before moving onto the next spot  Do not scratch or abrade paper  Call the Lab for questions or problems
  • 33.
  • 34. Newborn Hearing Screening  Hearing screening program  Performed at birth facilities  Follow up by audiologists  Referred to Early Childhood Intervention if hearing loss is found  About 3 babies per 1000 are born with hearing loss
  • 35. Resources Available for Parents  Newborn Screening Pamphlets may be ordered online. Available in English, Spanish & Vietnamese and are provided free of charge. Please call or e-mail NBS Program if other language is needed.  March of Dimes Video available in English and Spanish.  NBS Website.
  • 36. Resources for Providers  NBS Pamphlets  Collection and Newborn Screening Program Video  Collection posters  NBS Newsletter  NBS website  Power Point presentations on Collection  Online Provider Education  On-site In-Services