Introduction on HRSA Funded CCHD Activities September 21, 2018

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Presentation transcript:

Introduction on HRSA Funded CCHD Activities September 21, 2018 Debi Sarkar, MPH Branch Chief Genetic Services Branch Division of Services for Special Health Needs Maternal and Child Health Bureau (MCHB) Health Resources and Services Administration (HRSA)

History September 21, 2011 HHS Secretary adds CCHD to the Recommended Uniform Screening Panel Workgroup developed recommendations for a standardized approach to CCHD screening and diagnostic follow-up.

CCHD Newborn Screening Demonstration Program 2012 – 2015 $5.4 million 6 awardees Awardees: Virginia, Wisconsin, Michigan, Utah, New Jersey, New England Collaborative (Vermont, Rhode Island, Maine, Connecticut and New Hampshire)

CCHD Newborn Screening Demonstration Program (cont’d) Focused on enhancing state screening infrastructure for collecting and reporting pertinent information from hospitals. Provided leadership for the broader newborn screening community on how to develop networks with health professionals, professional organizations, family advocates, and other stakeholders to implement and improve CCHD newborn screening.

Results Implementation of CCHD newborn screening program within all participating states (10) Addressed implementation challenges in the areas of sustainability, provider and family education, screening algorithms and interpretation, data collection and quality improvement, telemedicine, home and rural births, and neonatal intensive care unit protocols. Over 500,000 infants are born each year in the ten states supported through this award. The impact of the award accrued to all states, since all 50 states participated on monthly TA calls around implementation of CCHD screening. Educational resources for: Screening staff in the nursery and birthing centers on topics of equipment, training, implementation of the CCHD algorithm, and referring infants for echocardiograms. Providers who care for infants diagnosed and treated for CCHDs.

Other Activities Education Efforts for Families and Providers Baby’s First Test CCHD videos and blogs Technical Assistance to Newborn Screening Programs: NewSTEPs www.newsteps.org/cchd Baby’s First Test provides up-to-date information, materials, and resources on family support and services on CCHD. http://babysfirsttest.org/newborn-screening/conditions/critical-congenital-heart-disease-cchd. Baby’s first Test has web resources including blogs and YouTube videos (available on YouTube) describing CCHD, the CCHD screening process, and the importance of CCHD screening. The video has been translated into many languages including Arabic, Chinese, French, Russian, and Spanish. Over 11,000 people from around the world have viewed these videos.

Contact Information Debi Sarkar, MPH Branch Chief Genetic Services Branch/Division of Services for Children with Special Health Needs Maternal and Child Health Bureau (MCHB) Health Resources and Services Administration (HRSA) Email: dsarkar@hrsa.gov Phone: 301-443-0959

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