Archive for the 'Education' Category

Nov 24 2017

Association of Public Health Laboratories 2017 Newborn Screening and Genetic Testing Symposium

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The 2017 APHL Newborn Screening and Genetic Testing Symposium was held in New Orleans, LA in September.  The meeting addressed state, national and international newborn screening, genetic testing, and policy issues important to national and global public health.  Topics included laboratory updates, molecular advances, candidate conditions, clinical outcomes, short and long-term follow up and quality assurance/quality control.  Select presentations are now available here.

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Nov 24 2017

NBS Molecular Training Workshop

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APHL is soliciting applications for the annual Molecular Training Workshop, to be held Monday,

February 26 to Friday, March 2, 2018, at the CDC’s Newborn Screening and Molecular Biology Branch Laboratories in Atlanta, GA.  This five-day intensive workshop will include wet-lab activities related to newborn disorders as well as lectures and discussions.  Discussion topics will include data reporting and interpretation, evaluation and QA/QC issues, just to name a few.

Visit the training webpage to access the application.  For more information, please contact Laura Russell.

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Nov 24 2017

Baby’s First Test Webinar on Family Advocacy in Newborn Screening

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Baby’s First Test hosted a webinar in September on how newborn screening programs can effectively collaborate with and support family advocates.  During the webinar, Amy Gaviglio, MS, CGC from the Minnesota Department of Health, discussed Minnesota’s experience supporting family advocates, and Shanna Quimby shared her family’s advocacy journey and her work through Gavin Flying for a Cure.

The webinar recording is available here.  You can join the online discussion about working with family advocates in newborn screening here.

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Nov 24 2017

Cystic Fibrosis NBS Timeliness: IRT/IRT/DNA

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This webinar was part of a NewSTEPs 360 newborn screening, cystic fibrosis community outreach and is posted here.  It included an interactive problem solving/idea sharing session on two-screen states performing IRT/IRT/DNA panels, with a primary focus on states that are currently using this algorithm. States new or soon to be new to this algorithm will benefit from this webinar, as well as programs that have recently implemented changes to their CF algorithms.

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Nov 24 2017

October SCID Quarterly Webinar

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This NewSTEPs webinar features an update on SCID newborn screening nationally and lessons learned from the SCID In-Person Meeting and is posted here.  Newborn screening experiences were also shared from the Utah and Tennessee newborn screening programs.

Southeast Regional Genetics Network Videos on the Emory University Metabolic Camp

Emory University holds an annual summer Metabolic Camp for adolescent girls and young women with inherited metabolic disorders, including phenylketonuria (PKU) and maple syrup urine disease (MSUD).  The research-based camp helps adolescent girls and young women learn how to care for their own health, and how to assure that they have healthy children, when and if they decide to start their own families.  Two videos about the program were developed by the Southeast Regional Genetics Network (SERN) and are available here and here.

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Nov 15 2017

Short Term Follow-Up Webinar: Spinal Muscular Atrophy (SMA)

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A NewSTEPs webinar on short-term follow up for SMA found on newborn screening is posted here.

The webinar presents clinical background on SMA, updates about the recently approved treatment nusinersen, and information on pilot screening studies on SMA in New England and Wisconsin.

The webinar also includes a program spotlight NBS program in Puerto Rico prior to Hurricane Maria.

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Aug 10 2017

Newborn Screening Educational Videos for Online Resource Library

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The Colorado School of Public Health (CSPH) in collaboration with the Association of Public Health Laboratories (APHL) through the NewSTEPs 360 project is partnering with the Newborn Screening Clearinghouse housed at Baby’s First Test at Genetic Alliance to develop an online resource library for educational videos developed by and for newborn screening (NBS) programs, partners, and stakeholders.

If you have developed or know of an educational video that isn’t listed below that could be included in the library with appropriate permissions, please email Jaclyn Seisman at jseisman@geneticalliance.org or Joshua Miller at joshua.i.miller@ucdenver.edu and include 1) the name of the video, 2) the URL where the online video can be accessed, 3) a short description on the content of the video, and 4) any instruction on how the video can be accessed if not available to the public.

List of NBS Educational Videos Gathered Thus Far: http://bit.ly/2py5JPV

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May 05 2017

NCEMCH Video: Where to Find Maternal and Child Health Resources

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The National Center for Education in Maternal and Child Health (NCEMCH) has released a video, ‘Where to Find MCH Resources: An Introduction’, by John Richards and Keisha Watson. This 20 minute overview introduces sources of public health information for the MCH workforce, as well as proposes the need for further sources.

 

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Jun 06 2016

NYMAC features X-linked Adrenoleukodystropgy (XALD) Symposium Talks- a collection of videos about XALD and NBS

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NYMAC put together a collection of videos about XALD and NBS. Below are link to all the videos compiled by NYMAC.

To view these links and more videos on other topics you can go to this NYMAC page.

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Jun 06 2016

Archived webinar available: Inborn Errors of Metabolism Collaborative (IBEMC) efforts to inform the states in the WSGSC

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The Inborn Errors of Metabolism Collaborative (IBEMC) systematically collects information about the clinical progress of people that have conditions identified by newborn screening, focusing on inborn errors of metabolism. Data is used to learn about their survival, medical status, and long-term outcomes; and permit development of evidence-based practice in patient care.

Presenters on this webinar include Susan Berry, Mat Edick and Sally Hiner. Susan Berry is with the University of Minnesota and is the Clinical Co-PI for the IBEMC.  She has been involved from its inception, bringing the concept to the Region 4 Genetics Collaborative, and working to develop and implement long-term follow up for IBEM first as a workgroup, later as a HRSA Priority Project and most recently as an NIH supported R01.   Mat Edick joined MPHI (Michigan Public Health Institute) in April of 2015 as the Senior Research Scientist for the IBEMC. Sally Hiner, also with MPHI is the IBEMC Senior Project Coordinator and has also been with the project from its beginning with Region 4.

Recording of the webinar is available here.

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