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Going Full Circle: Closing the Gap Between Parent and Provider

  • This year, my pilot project through the Genetic Alliance and Baby’s First Test has definitely brought awareness as my presentation / educational session “Going Full Circle” voices. Beginning this journey with nine other task force members in January seemed like an awesome calling; To bring awareness of Newborn Screening to the consumer.

    The social media training, the blogging experience, listening to presentations from Sara Copeland from the Health Resources and Services Administration, and presenting a group public comment to the Secretary Advisory Committee of Hereditable Disorders in the Newborn, are just a few examples of  me how the task force properly aligned me to prepare to be a network and a resource to the health care community and families.

    I have been able to work towards my goal of closing the gap between the provider and the parent. I created an educational session incorporating a pre test survey to assess the knowledge base, an overview of genetics, three evidence based articles, case studies, and a final test. The educational session also presented some very important links for those obtaining their series of newborn screen testing in the state of DE.

    Being a part of the 2012 Newborn Consumer Task Force has opened up the opportunity for me to present for the Newborn Screening Advisory Council of DE , assist in the revision of the Newborn Screening Policy at A.I.duPont Childrens Hospital, collaborate with Bethany Hall-Long, PhD, RN a State Representative of DE as well as accept an invitation to be a part of the Interagency Council of DE, an appointed position by the Governor Jack Markell.

    The task force members of 2012 can be found at  http://www.babysfirsttest.org/newborn-screening/consumer-task-force.

    Other essential links to understanding the impact of the changes for Newborn Screening for the consumer as well as resources available for families can be found using the following links:

    What conditions are screened for in your state:

    http://www.babysfirsttest.org/newborn-screening/states

    Government Resources:

    http://www.babysfirsttest.org/newborn-screening/screening-resources

    Genetics and Family History:

    http://www.babysfirsttest.org/newborn-screening/genetics-family-history

    In early 2013, continuing education credits will be offered to all of the facilities that have received the educational session, such as A.I. DuPont Children’s Hospital and Christiana Care Hospital. 

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