Archive for June, 2016

Jun 06 2016

New Prenatal Genetic Testing Video Series from Washington State Department of Health (DOH) and Genetic Support Foundation Now Available Online

Published by under General

Today, pregnant women are faced with deciding among an increasingly complex variety of prenatal genetic tests. It’s essential that they have access to resources that can educate them about these tests. Washington State law (RCW 70.54.220) and professional societies’ guidelines recommend that all pregnant women be offered options for prenatal screening and diagnosis. Women’s decisions about these testing options should be informed and consistent with their needs and values. The Screening and Genetics program collaborated with the Genetic Support Foundation (GSF), to produce a series of seven videos regarding prenatal genetic testing options.  The videos are available now on DOH’s YouTube Channel and are ready to be shared with patients. Here they can select among the series that includes:

1) How to Decide About Prenatal Genetic Testing
2) Conditions Commonly Tested for During Pregnancy
3) Prenatal Cell Free DNA Screening
4) Traditional Maternal Serum Screening
5) Prenatal Ultrasound
6) Chorionic Villus Sampling
7) Amniocentesis

These are also posted on our website to download. We hope that both patients and providers will find them useful. Expectant parents can watch at home and health care providers can download them to show patients during office visits. The storyboard development involved extensive audience testing with the intended audience of women of reproductive age as well as healthcare professionals, parents of children with genetic conditions, and leaders from advocacy groups.  Please take a moment to view the videos and consider sharing with colleagues, family and friends.

Feel free to share any comments you have at Genetics@doh.wa.gov

 

Comments Off on New Prenatal Genetic Testing Video Series from Washington State Department of Health (DOH) and Genetic Support Foundation Now Available Online

Jun 06 2016

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

Published by under Education

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.

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

Jun 06 2016

Region 4 Midwest Genetics Collaborative presents “Receiving a Diagnosis: The Journey from Hope to Cope” Family video

Published by under General

“Receiving a Diagnosis: The Journey from Cope to Hope” family video is now available from Region 4. Having a child diagnosed with a genetic condition is an emotional journey for parents. Coping with the diagnosis is an ongoing process. There is no right or wrong way to feel. The Region 4 Midwest Genetics Collaborative brought together some families to share their experience in this video.

To view this video, please follow this link.

Comments Off on Region 4 Midwest Genetics Collaborative presents “Receiving a Diagnosis: The Journey from Hope to Cope” Family video

Jun 06 2016

NCC Care Coordination Exemplary Practices Report

Published by under General

Coordinating Care for Children with Genetic Disorders: Sharing Exemplary Practices from Primary Care and Specialty Care Providers  report is now available! Please share the report (linked above) with your networks. The report is hosted on the NCC Care Coordination Workgroup Products page (here). On the landing page is the report itself as well as the abstract. If you have specific criteria to share the report with your network, please contact Megan Lyon.

Twenty-four programs were nominated for providing exemplary care in coordinating services for children with heritable disorders. Individuals representing the programs participated in qualitative telephone interviews. The nominees represented a variety of primary care and specialty practices and community-centered programs. Key themes and strategies emerged from the interviews, several of which crossed settings – details are offered herein. Providing coordinated care is rewarding for the clinic staff and deemed valuable by patients and families, but it is time-consuming and not adequately reimbursed by third-party payers. Developing and maintaining committed staff and financial support are ongoing challenges for the programs interviewed.

Comments Off on NCC Care Coordination Exemplary Practices Report

Jun 06 2016

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

Published by under Education

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.

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

Jun 06 2016

Webinar June 20, 2016 from the Catalyst Center: Addressing Health Coverage Inequalities Among CSHCN in Your State

Published by under Education

Concerned about health coverage inequities among CSHCN in your state? The Catalyst Center has created “Health Care Coverage and Financing for Children with Special Health Care Needs: A Tutorial to Address Inequities” to help Maternal and Child Health (MCH) leaders, family leaders, and other stakeholders understand and address health care coverage inequities that exist among vulnerable subgroups of CSHCN based on race, ethnicity, language, immigration status, and level of functional difficulty .

Join the Catalyst center to “get acquainted” with this new tutorial. MCH staff from Alaska and Michigan will share strategies they use to work towards health equity for CSHCN in their states.

Register for the webinar here.

Comments Off on Webinar June 20, 2016 from the Catalyst Center: Addressing Health Coverage Inequalities Among CSHCN in Your State

Jun 06 2016

Mark your calendars for the 2016 Regional Summit in Seattle, WA from September 26-27

Published by under Announcements

This year’s WSGSC Regional Summit will be held at the Seattle Public Library.  Please mark your calendars for September 26-27, 2016.  Pauline will be contacting our stakeholders in August to start travel coordination.

Comments Off on Mark your calendars for the 2016 Regional Summit in Seattle, WA from September 26-27

Jun 06 2016

WSGSC hosted Telegenetics Training August 2, 2016 in Tucson, AZ – enrollment complete

Published by under Education

Enrollment for the next Genetic Counselor Telegenetics training has closed.  This training will include ten self-paced on-line modules, two webinars, and a one day in-person, hands-on session.  The in-person session is scheduled for August 2, 2016 in Tucson, AZ.  The WSGSC provides travel support for the in-person training and continuing education credits are provided for participants.  If you or a genetic counselor you know is interested in future trainings, please contact Michelle at michelle@hawaiigenetics.org for more information.

Comments Off on WSGSC hosted Telegenetics Training August 2, 2016 in Tucson, AZ – enrollment complete

Jun 06 2016

Registration open for the South Central Telehealth Forum August 1-2, 2016 in Nashville, TN

Published by under Education

Travel to Nashville, Tennessee for the 4th Annual South Central Telehealth Forum.  Presenters and Partners from across the country will share tools, resources and techniques on how they Drive Quality healthcare via telemedicine and mHealth.

Topics Include:

  • mHealth/Remote Patient Monitoring
  • Safe Practice
  • Reimbursement
  • Chronic Disease
  • School-Based Programs
  • Measuring Outcomes
  • Rural and Federal Policy
  • Real-World Academic, Hospital and Clinic Examples
  • Special sessions on telegenetics!

The meeting will help professionals connect and collaborate to build programs and improve patient outcomes.

Comments Off on Registration open for the South Central Telehealth Forum August 1-2, 2016 in Nashville, TN

Jun 06 2016

Regional Genetic Services Support Model Recommendation Brief – NOW AVAILABLE!

Published by under Announcements

WSGSC provided consultation to the National Coordinating Center RSSM Work Group on the Regional Support Services Model Recommendation Brief to the Health Resources and Services Administration.  Thank you to the Collaborative partners who provided input and reviewed the draft report and submitted comments.  The final report is now available here.

Comments Off on Regional Genetic Services Support Model Recommendation Brief – NOW AVAILABLE!