Nov 24 2017

2017 WSRGN Regional Summit, Planning for 2018

Published by under Announcements

The 2017 Western States Summit in October was a great success, with quite a few new attendees as well as many familiar faces.  Participants in the 2017 WSRGN annual Summit shared their opinions on how and if they will use information discussed at the Summit and the results will be available on the WSRGN website soon.

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Nov 24 2017

Volunteers Needed for National Coordinating Committee (NCC) Work Groups

Published by under Announcements

The following NCC workgroups are looking for new members:  Telegenetics, Clinical Services Directory Development, and Genetics and Genomic Education.  Please contact Megan Lyon, NCC Project Manager, at mlyon@acmg.net, if you would like to volunteer.

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Nov 24 2017

NCC Evaluation Work Group

Published by under Announcements

WSRGN participates in the NCC Evaluation Work Group. The group continues to work on coming to consensus on what performance measures will be monitored and what data will be collected to measure accomplishments of the Networks.  Look for updates coming later this year on final performance measures and data collection standards.

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Nov 24 2017

WSRGN Family Advocates’ AMCHP Presentation Accepted

Published by under Announcements

WSRGN Family Advocate Tamara Bakewell, Project Coordinator at the Oregon Family to Family Health Information Center, partnered with the WSRGN Family Advocates Work Group and Director to submit a presentation to AMCHP.  The presentation was accepted, and the group will present on “Family Advocacy – Genetics Networks” partnerships at the annual 2018 AMCHP meeting in February.

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Nov 24 2017

November 2017 Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children

Published by under Announcements

The most recent meeting was held on November 8-9.  NewSTEPs presented an update about progress towards the newborn screening (NBS) timeliness goals outlined by the Committee.  There were other presentations regarding the evidence review for spinal muscle atrophy and the public health impact of severe combined immunodeficiency, carrier status in the context of NBS, and a review of long term follow up on NBS.  Reports from the Laboratory Standards and Procedures workgroup, Follow-up and Treatment workgroup, and Education and Training workgroup were also presented.

The next ACHDNC meeting will be held February 8-9, 2018.  For more information and links to webcasts of past meetings, click here.

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Nov 24 2017

ACHDNC Workgroup Nominations

Published by under Announcements

The Advisory Committee for Heritable Disorders in Newborns and Children (ACHDNC) is accepting nominations for the following three workgroups:

1.  Education and Training
2.  Follow-up and Treatment
3.  Laboratory Standards and Procedures

Self-nominations should include the following information:

  1. Statement of interest. Be sure to include the workgroup of interest (please indicate one Workgroup per nomination)
  2. Brief description of your expertise and experience that will contribute to the Workgroup
  3. CV or Résumé

Nominations must be emailed to Alaina Harris by 11:59 p.m. on November 20, 2017.  Please name the Workgroup in the subject line of the email.  Final decisions regarding Workgroup membership will be made by the Chair of the ACHDNC and the Designated Federal Officer for the ACHDNC by December 2017.

Each member selected can serve on the Workgroup for up to four years (e.g., January 1, 2018 to December 31, 2021).  Past Workgroup members are eligible to apply to serve again.  Any member can voluntarily remove themselves from a Workgroup at any time with a resignation letter to the Chair of the Workgroup.

Members are expected to attend (via webinar or in-person) Workgroup meetings held in conjunction with the quarterly ACHDNC meetings.  Travel and lodging costs are not covered.  In addition, Workgroup members may be asked to participate on monthly teleconferences to work on projects.

For more information on the Committee, please visit the ACHDNC webpage.

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Nov 24 2017

Telegentics Training Update

Published by under Telehealth

The WSRGN, with support from the Southwest Telehealth Resource Center, recently held two training sessions, one in Tuscon, AZ in August and another in Iowa City, Iowa in October.  The training includes a series of online modules and two webinars along with a one-day in-person session.  The purpose of the training is to introduce genetics providers to telemedicine equipment and how to incorporate telegenetics into clinical practice.

The next training will be held in Tucson in February 2018.  Please contact Michelle Takemoto at michelle@hawaiigenetics.org if you or a genetics provider you know is interested in future trainings.

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Nov 24 2017

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

Published by under Education

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

Published by under Education

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

Published by under Education

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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