Newborn Screening

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Work Group Information

The Heartland Newborn Screening (NBS) Committee was originally formed as a sub-committee of the Clinical Services Committee, and now functions as a work group. The workgroup is comprised of individuals from each of the eight Heartland states who have an interest in newborn screening. The committee first met at the 2005 Newborn Screening and Genetic Testing Symposium in Portland Oregon, and has subsequently met by phone conference and at each annual meeting. Currently monthly phone conferences are scheduled.

The goals of the committee are to identify each state's NBS resources, needs and ways in which states can collaborate. Based on this information, projects will be determined which will facilitate collaboration and help address identified needs.

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Projects

"Just In Time" Primary Care Provider Education Project

The NBS Work Group will be collaborating with the Education and Clinical Services work groups on a web based educational program on genetic disorders for primary care providers. This project aims to provide web based information on several heritable disorders, with an option of receiving CME (continuing medical education) credits. The Utah MedHome Portal Diagnosis Modules will be used to provide content. Clinical Services will provide content for a Prader Willi Syndrome module while NBS will provide content on MCAD, a metabolic disorder detected through expanded newborn screening. Laurie Smith, metabolic geneticist from Kansas City, will be the lead author.

NBS Exchange Program

An exchange program between state NBS Programs has been organized by Arlena Pugliese (IA) and Barb Schweitzer (ND). The goal of this program is to identify areas in which one state can learn from another and arrange in person visits for assistance and education.

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Past projects:

Prenatal NBS education: This project involved identifying and distributing an educational video on NBS for expectant parents. A workgroup was formed and headed by Julie Miller. A survey was developed and sent randomly to prenatal health care providers in every state to determine needs and possible utilization of the video. Several videos were reviewed; March of Dimes "A Parent's Guide to Newborn Screening" and the Health Research and Educational Trust of New Jersey’s "Newborn Screening: Protecting Your Baby's Health" have been selected. The NJ video was being customized for IA, MO, ND, and NE. The March of Dimes video was selected for use in AR, SD, OK and KS. Videos were distributed to primarily federally funded health clinics in these states; usage evaluation will be done by March, 2008.

Newborn Screening Educational Videos Now Available On-Line

The March of Dimes Video, “A Parent’s Guide to Newborn Screening” is available on line, in both English and Spanish, via YouTube:

Uniform NBS Protocol/Reporting:

Transfusion This project is being undertaken by a work group headed by Dawn Peck, and involves comparing and standardizing verbiage used in reporting transfusion status during NBS. Data was collected in 2007.

Total Parenteral Nutrition (TPN) The purpose of the Heartland TPN project was to survey a good representative portion of the states (large and small, experienced with MS/MS) on their NBS protocols for TPN fed infants. Data was collected in 2007. Twenty states were sent surveys and nine responded back (IA, IN, MN, MO, NC, NE, NJ, TX, and WI). The questions pertained to pre-analytical, analytical, and post analytical decisions that must be made with TPN fed infants, and the result comments that are used. The goal was to aid the Heartland States that are adding MS/MS to form their own decision schemes and result comments for TPN fed infants using the experience of other states.

Identifying TPN interference for MS/MS testing needs to be assessed on a case-by-case basis looking at each individual patient scenario along with the complete amino acid profile. Careful use of result comments can be employed to reduce false positive results and unnecessary anxiety. There were many similarities in these comments among the states surveyed, but each were a little different. Regular NBS collection time protocols should be followed for initial screens regardless of TPN feeding. The majority of TPN fed infants will still fall in the normal range for MS/MS results (albeit some high-normal), and the true positive cases should be identifiable from the TPN interference cases.

TPN Survey Results

Past Assessments (2006)

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Minutes/Documents

The links below are to PDF files, which require Adobe Reader to view.

Documents:

For December 1, 2006 Meeting:

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Members

Click on the committee member's address to send an e-mail.
Send email to entire work group.

Facilitator:

Core Members:

Other Members:

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Meeting Dates & Agendas

Fourth Wednesday of the month at 3:30. Problems with call in-contact: ATT TeleConference Services at (800)526-2655

  • November 19, 2008: Wed. 3:30-4:30 Conference Call Agenda

       Toll Free Dial-In Number: (877) 322-9654
        PARTICIPANT CODE: 163183

  • October 22, 2008: Wed. 3:30-4:15 Conference Call Agenda
  • September 11-12, 2008: Annual Meeting in Sioux Falls Agenda
  • August 27, 2008: Wed. 3:30-4:15 Teleconference Agenda
  • July 23, 2008: Wed. 3:30-4:15 Teleconference
  • June 25, 2008: Wed. 3:30-4:15 Agenda
  • May 28, 2008: Wed. 3:30-4:15
  • April 23, 2008: Wed. 3:30-4:15 Agenda Draft Newsletter
  • March 26, 2008: Wed. 3:30-4:30 Agenda
  • February27, 2008: Cancelled
  • January 23, 2008: Wed. 3:30-4:15 Agenda
  • January 5, 2007: Wed., 3:30-4:15 pm
  • October 25, 2007: Thurs, 3-4 pm.
  • September 6-7, 2007: Annual Heartland Conference, Oklahoma City
  • June 1, 2007: 9 AM teleconference. Minutes posted.
  • May 7-10, 2007: Informal Meeting at: 2007 Newborn Screening and Genetic Testing Symposium, Minneapolis MN
  • March 2, 2007: 9 AM teleconference. Agenda
    Related document: Transfusion project Mar07
  • December 1, 2006: 9 AM teleconference. Minutes above.
  • September 29, 2006: Annual HRCG Meeting, Omaha Hilton, Omaha Nebraska. Minutes above.
  • June 16, 2006: 2-3pm Committee meeting by conference call. Minutes above.

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Last updated: 11/19/08 SRW