Mar 28 2018

Updated ACT Sheet and New Algorithm for Pompe Disease

Published by under Education

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

Published by under Education

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

Published by under Education

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

Published by under Education

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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Mar 28 2018

Telegenetics Training Program Expanding!

Published by under Telehealth

For the first time, the WSRGN held two back-to-back in-person Telegenetics Training sessions in February and will be holding three back-to-back sessions in New England in April.  There are multiple dates planned in the Western States region over the next several months: Southern California in the second week of June, Northern California in mid-August, and Tucson, AZ in late January 2019.  Exact dates and locations in California are being narrowed down, and an announcement will be sent to all WSRGN partners once they are set.

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Mar 28 2018

ACHDNC Recommends Adding SMA to the RUSP

Published by under General

At its quarterly meeting in February, the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) recommended that newborn screening for Spinal Muscular Atrophy (SMA) be added to the Recommended Uniform Screening Panel (RUSP).  The recommendation now goes to Health and Human Services Secretary, Alex Azar, for final approval.  The next ACHDNC meeting will be held in-person on May 10-11.

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Mar 28 2018

WSRGN Family Advocates Presentation a Great Success at AMCHP!

Published by under General

WSRGN Family advocates and staff, Tamara Bakewell, Angela Lindig, Jill McCormick, and Sylvia Mann presented on “Family Advocacy – Genetic Networks” at the Association of Maternal & Child Health Programs Annual Conference in February.  We had a full house for this important topic, with over eighty people in attendance.  AMCHP will be sharing the recording, and it will be made available for all WSRGN partners.

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Mar 28 2018

CDC Public Health Genomics Webinar, March 27, 2018, 1:00-2:30 pm PST

Published by under Announcements

The Role of Cost-Effectiveness Analysis in Precision Medicine and Public Health Genomics:  Examples of estimates of costs, effectiveness, and cost-effectiveness in public health and precision medicine will be presented, including ivacaftor treatment for cystic fibrosis, addition of conditions for newborn screening and Lynch syndrome screening of newly diagnosed colorectal cancers. The role of cost-effectiveness and other criteria in prioritizing and evaluating public health activities in genomics and precision medicine will also be discussed.

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Mar 28 2018

DNA Day, April 25, 2018

Published by under Announcements

National DNA Day is celebrating the 15th anniversary of the completion of the Human Genome Project in 2018!  The National DNA Day Network will be holding events all over the country.  Visit the website to find an event near you or to host an event yourself!

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