Check out the latest NCC Collaborator Newsletter, for the final monthly newsletter of the 2012-2017 award period.

To continue to better understand parents’ attitudes towards newborn screening for later onset disorders, education needs, and preferred contact methods, the Hawaii Genomics Section designed and distributed a short survey at the Seattle Family Expo on March 18 and 19, and the Sacramento Kids Expo on April 9 and 10. New and expectant parents coming to our booth were very interested in newborn screening, and we collected hundreds of completed surveys.

Huge and sincere thanks to the Washington and California State Departments of Health for all their time and invaluable help!

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

“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.

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.

The February edition of the NCC Collaborator is available! This issue focuses on regional projects be modified for, disseminated to, and replicated by other regional collaboratives. To view the February edition of the NCC Collaborator, click here.

On December 3rd, National Public Radio (NPR) aired a segment on whole genomic sequencing and newborn screening. This was their fifth story in their series “The $1,000 Genome.” To hear or read the segment, go to:

http://www.npr.org/blogs/health/2012/12/03/165272373/genome-sequencing-for-babies-brings-knowledge-and-conflicts?ft=1&f=1001

Share your ideas for Healthy People 2020! The Health Resources and Services Administration (HRSA) has charged the regional genetics and newborn screening collaboratives to measure and monitor Healthy People 2020 objectives. Healthy People provides science-based, 10-year objectives to improve the health of Americans. For 3 decades, Healthy People has established benchmarks and monitored progress in order to: 1) Encourage collaborations across communities and sectors; 2) Empower individuals toward making informed health decisions and; 3) Measure the impact of prevention activities. To assure that genetics and newborn screening service issues are included in Healthy People 2020 objectives, visit http://www.healthypeople.gov/2020/about/publicComment.aspx?source=govdelivery between October 15-November 2 and make public comment.

This presentation will highlight ways that Healthy People 2020 can be used, identify proven strategies and lesions learned, provide action steps for stakeholder groups, and showcase examples of stakeholders’ implementation efforts. Learning objectives include:

1. To raise awareness of Healthy People 2020’s current and planned activities for 2012-2013
2. To explore best practices and identify proven strategies and lessons learned for implementation activities
3. To identify action steps stakeholders can use to implement Healthy People 2020

This webinar will take place on November 7, 2012 at 12:00pm (EST). For more information and to reserve your spot now, please visit: https://hhs-faca.webex.com/mw0307l/mywebex/default.do?nomenu=true&siteurl=hhs-faca&service=6&rnd=0.6009711259275677&main_url=https://hhs-faca.webex.com/ec0606l/eventcenter/event/eventAction.do%3FtheAction%3Ddetail%26confViewID%3D416958177%26%26%26%26siteurl%3Dhhs-faca

The 2013 Joint Meeting of the Newborn Screening & Genetic Testing Symposium (NBSGTS) and International Society for Neonatal Screening (ISNS) will be held in Atlanta, GA on May 5-10, 2013. Abstracts may be submitted for presentations, posters or roundtables. Only abstracts submitted online will be considered. The deadline for abstract submission is November 2, 2012.

For more information on how to submit an abstract, please visit: http://images.magnetmail.net/images/clients/APHL/attach/NBSGTS_Call_for_Abstracts.pdf