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NBS02-A2 (formerly I/LA27-A) Newborn Screening Follow-up; Approved Guideline – Second Edition Judi Tuerck & Bridget Wilcken CoChairs May 7, 2013 Atlanta, GA
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NBS02-A2 (formerly I/LA27-A) Newborn Screening Follow-up ......Newborn Screening Follow-up; Approved Guideline This guideline describes the basic principles. scope. and range of follow-up

Aug 05, 2021

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Page 1: NBS02-A2 (formerly I/LA27-A) Newborn Screening Follow-up ......Newborn Screening Follow-up; Approved Guideline This guideline describes the basic principles. scope. and range of follow-up

NBS02-A2 (formerly I/LA27-A) Newborn Screening Follow-up; Approved Guideline – Second Edition

Judi Tuerck & Bridget WilckenCo‐Chairs 

May 7, 2013 Atlanta, GA 

Page 2: NBS02-A2 (formerly I/LA27-A) Newborn Screening Follow-up ......Newborn Screening Follow-up; Approved Guideline This guideline describes the basic principles. scope. and range of follow-up

Document Development Committee

Page 3: NBS02-A2 (formerly I/LA27-A) Newborn Screening Follow-up ......Newborn Screening Follow-up; Approved Guideline This guideline describes the basic principles. scope. and range of follow-up

NBS02-A2 (formerly I/LA27-A)

Page 4: NBS02-A2 (formerly I/LA27-A) Newborn Screening Follow-up ......Newborn Screening Follow-up; Approved Guideline This guideline describes the basic principles. scope. and range of follow-up

Intended Audience

Page 5: NBS02-A2 (formerly I/LA27-A) Newborn Screening Follow-up ......Newborn Screening Follow-up; Approved Guideline This guideline describes the basic principles. scope. and range of follow-up

Newborn Screening System

Page 6: NBS02-A2 (formerly I/LA27-A) Newborn Screening Follow-up ......Newborn Screening Follow-up; Approved Guideline This guideline describes the basic principles. scope. and range of follow-up

Goal of FU Guidelines

Page 7: NBS02-A2 (formerly I/LA27-A) Newborn Screening Follow-up ......Newborn Screening Follow-up; Approved Guideline This guideline describes the basic principles. scope. and range of follow-up

The 2nd edition aimed to:

Page 8: NBS02-A2 (formerly I/LA27-A) Newborn Screening Follow-up ......Newborn Screening Follow-up; Approved Guideline This guideline describes the basic principles. scope. and range of follow-up

Obtaining Global Input

Page 9: NBS02-A2 (formerly I/LA27-A) Newborn Screening Follow-up ......Newborn Screening Follow-up; Approved Guideline This guideline describes the basic principles. scope. and range of follow-up

Harmonize with CLSI/NBS guidelines

In-range is now Screen NegativeOut-of-range is now Screen Positive

Page 10: NBS02-A2 (formerly I/LA27-A) Newborn Screening Follow-up ......Newborn Screening Follow-up; Approved Guideline This guideline describes the basic principles. scope. and range of follow-up

Update or Reaffirm FU Activities

Page 11: NBS02-A2 (formerly I/LA27-A) Newborn Screening Follow-up ......Newborn Screening Follow-up; Approved Guideline This guideline describes the basic principles. scope. and range of follow-up

Long Term Follow-up Roles and Responsibilities

Page 12: NBS02-A2 (formerly I/LA27-A) Newborn Screening Follow-up ......Newborn Screening Follow-up; Approved Guideline This guideline describes the basic principles. scope. and range of follow-up

Condition Definitions

Page 13: NBS02-A2 (formerly I/LA27-A) Newborn Screening Follow-up ......Newborn Screening Follow-up; Approved Guideline This guideline describes the basic principles. scope. and range of follow-up

Incidental Changes

Page 14: NBS02-A2 (formerly I/LA27-A) Newborn Screening Follow-up ......Newborn Screening Follow-up; Approved Guideline This guideline describes the basic principles. scope. and range of follow-up

Future (what we forgot?)

• Compare STFU protocols for efficacy• Evaluate the new STFU models in CCHD screening 

• Continue working with NBSS to refine condition definitions or define for new conditions

Page 15: NBS02-A2 (formerly I/LA27-A) Newborn Screening Follow-up ......Newborn Screening Follow-up; Approved Guideline This guideline describes the basic principles. scope. and range of follow-up

ACKNOWLEDGEMENTS