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National Center on Birth Defects and Disabilities

Subcommittee on Follow-up and Treatment Overarching Priorities May 17, 2012 Coleen A. Boyle, PhD, MS. National Center on Birth Defects and Disabilities. Subcommittee Charge (from 9/25/11).

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National Center on Birth Defects and Disabilities

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  1. Subcommittee on Follow-up and Treatment Overarching PrioritiesMay 17, 2012Coleen A. Boyle, PhD, MS National Center on Birth Defects and Disabilities

  2. Subcommittee Charge (from 9/25/11) • Identifies barriers to post-screening implementation and short and long-term follow-up, including treatment, relevant to newborn screening results • Develops recommendations for overcoming identified barriers in order to improve short and long-term follow-up, including treatment, relevant to newborn screening results • Offers guidance on responsibility for post-screening implementation and short and long-term follow-up, including treatment, relevant to newborn screening results

  3. Subcommittee Members • Susan Berry Carol Greene • Robert Bowman Charlie Homer • Coleen Boyle Celia Kaye • Christine Brown Alex Kemper • W. Carl Cooley Chris Kus • Denise Dougherty Jana Monaco • Lisa Feuchtbaum Robert Ostrander • Michelle Fox Brad Therrell • Alexis Thompson Andrea Williams Other experts: Amy Brower, Kathryn Camp, Debra Freedenberg, Nancy Green, Kathy Harris, Cindy Hinton, Amy Hoffman, Rani Singh, Alan Zuckerman HRSA experts: Jill Shuger, Marie Mann

  4. Priorities • Facilitating screening program implementation and follow-up • Closing gaps in access to care and services • Improving clinical outcomes

  5. Facilitating Screening Program Implementation and Follow-Up • Possible case studies or projects: • Ongoing evaluation of CCHD implementation • Hearing screening f/u • Connecting POC testing with DBS screening

  6. Closing Gaps in Access to Care • Roles and responsibilities in short- and long-term f/u • Recommendations without clear guidance on roles • Challenges and opportunities in the changing health care environment

  7. Improving clinical outcomes • Challenges of evolving technology and health care system • Sickle Cell as a condition that could serve as a test case • Gaps between technology and disease management practices • “Outstanding interventions but a very frustrated system of l/t care” • Variability in SC Trait notification and f/u systems • Consider options for overarching approaches and/or other case studies or comparisons

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