Archive for the 'Education' Category

Mar 28 2018

Genetics Education for Primary Care Providers

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The American Society of Human Genetics (ASHG) maintains a list of genetics resources for PCPs, including a guide to genomic test results for non-genetics providers.  This guide features both detailed explanations and bullet-pointed summaries of each section to accommodate provider time constraints.

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Mar 28 2018

NCC Resource Repository

Published by under Education

Find genetic service resources for patients and families, providers (genetics and non-genetics), public health officials, educators, and insurers in the NCC Resource Repository. Resources housed within the repository range from care coordination to telegenetics and are from the NCC, the seven Regional Genetics Networks (RGNs), the Family Support Center, and other national partners.

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Jan 31 2018

MCHB National Survey of Children’s Health

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In 2016, the Maternal and Child Health Bureau (MCHB) integrated the National Survey of Children’s Health and National Survey of Children with Special Health Care Needs.  The results of this survey, including information on if a parent has ever been told by a provider that their child has a genetic condition, were recently published in the HRSA Data Resource Center.  Explore the data at: http://www.childhealthdata.org/learn/NSCH?mc_cid=b3d4cf630a&mc_eid=770ca46dd4

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Jan 31 2018

November NewSTEPs New Disorders Webinar

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APHL assists state programs to implement newborn screening for Pompe, MPS I and X-ALD through NewSTEPs and the New Disorders Implementation Project. During the first webinar of this series, the Iowa Department of Public Health and the Tennessee Department of Health presented progress on their activities.

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Jan 31 2018

NewSTEPs Resource Library

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As a part of their newly updated website, NewSTEPs developed a resource library that can be filtered by disorder, topic, and type.  The disorders menu highlights conditions that are newer to the Recommended Uniform Screening Panel.  The topic menu includes areas such as follow-up, quality improvement, policy, and timeliness.  The type menu refers to the format of the resource, including webinars, policy statements, reports, and educational tools.  Submissions of additional resources are encouraged and accepted as the library continues to grow. Please direct any submissions to Sari Edelman at sari.edelman@aphl.org.

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Jan 31 2018

Family Experiences with Newborn Screening Follow Up

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This NewSTEPs Short Term Follow Up webinar featured a state spotlight on the California newborn screening program followed by presentations on parent experiences with short term follow up from Allison Wood, parent of a child with GA-1, and Natasha Bonhomme, Chief Strategy Officer at Genetic Alliance and Director of Baby’s First Test.

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Jan 31 2018

State Newborn Screening Legislation Tracking

Published by under Education

APHL recently launched the State NBS Bills webpage to provide an interactive platform to monitor newborn screening legislation across the US, such as new additions to state NBS panels and fee increases. Users can click on highlighted states to view proposed and enacted legislation, and bill information is automatically updated as it becomes available. This tool is restricted to APHL staff, NBS program personnel, state laboratory directors and federal partners. 

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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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