Archive for the 'Education' Category

Mar 28 2018

Updated ACT Sheet and New Algorithm for Pompe Disease

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The updated Pompe Disease ACT Sheet and newly developed Pompe algorithm are now available on the ACMG website.  The ACTion(ACT) Sheet describes the short-term actions a health professional should follow in communicating with the family and determine the appropriate steps in the diagnostic process. The accompanying algorithm presents an overview of the basic steps involved in determining the final diagnosis in the infant.

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Mar 28 2018

CDC Public Health Genomics Resources

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The CDC Office of Public Health Genomics provides timely and credible information for the effective and responsible translation of genomics research into public health and health care.  Their website has a wealth of information, from Genetics 101 resources, to Family Health History information, to the Public Health Genomics Knowledge Database (PHGKD).  The PHGKD is an online, continuously updated, searchable database of published scientific literature, CDC resources, and other materials that address the translation of genomic discoveries into improved health care and disease prevention.

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Mar 28 2018

State Public Health Genomics Programs Database

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The State Public Health Genomics Programs database has information about state public health programs and activities relevant to genomics. States have implemented genomics applications for Hereditary Breast and Ovarian Cancer syndrome, Lynch Syndrome, Familial Hypercholesterolemia, newborn screening, and more. Find relevant information from your own state or learn about what’s been accomplished in other states. You can filter results by condition and resource type (data, programs, education, policy, tools, and general information. You can also view the content of the database using State Genomics Implementation Map

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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

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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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