TM Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities The New EHDI Screening and Follow-up Survey John Eichwald, M.A., FAAA Marcus Gaffney, MPH

TM The collection and reporting of consistent and comparable data across state and territorial EHDI jurisdictions is compromised by many factors including: 32 jurisdictions have some type of EHDI legislation some jurisdictions only recommend or do not require that all newborns be screened some jurisdictions do not mandate reporting to the state/territory program EHDI Screening and Follow-Up Survey

TM 2000 JCIH position statement recommendation: development of uniform state registries and national information databases incorporating standardized methodology, reporting, and system evaluation standardize data definitions to ensure the value of state registries and federal data sets and to prevent misleading or unreliable information EHDI Screening and Follow-Up Survey

TM Under Congressional authority the CDC-EHDI program is directed to: develop standardized procedures for data management to ensure quality monitoring of newborn and infant hearing loss screening, evaluation, and intervention programs and systems EHDI Screening and Follow-Up Survey

TM Hospital protocols may vary considerably even within a jurisdiction: some hospitals employ a single stage screening (OAE or ABR) some hospitals employ a two stage screening (OAE plus ABR) some hospitals employ an inpatient/outpatient screening protocol EHDI Screening and Follow-Up Survey

TM In October 2006 the Federal Office of Management and Budget (OMB) approved a new EHDI Survey This survey replaces the Directors of Speech and Hearing Program in State Health and Welfare Agencies (DSHPSHWA) survey which was used to collect EHDI information from 1999 through 2004 EHDI Screening and Follow-Up Survey

TM The purpose of the CDC-EHDI survey is to collect and report calendar year aggregate data and will be used as the official source to help assess progress towards: National EHDI Goals Healthy People 2010 Objective 2811 CDC PART 1 and GPRA 2 OMB performance measures EHDI Screening and Follow-Up Survey Program Assessment Rating Tool 1 Government Performance Results Act 2

TM Designed to collection information in a manner that provides more accurate, reliable, and consistent reporting among the state and territorial EHDI jurisdictions Differs from how data was reported using the DSHPSHWA survey EHDI Screening and Follow-Up Survey

TM Both CDC-EHDI and DSHPSHWA surveys were designed to report screening, diagnosis, and intervention data Both surveys use the DSHPSHWA classification for degree of hearing loss Both surveys are voluntary CDC-EHDI survey requests more detailed information EHDI Screening and Follow-Up Survey

TM DSHPSHWA survey was based on 9 core data items developed by a 1998 Task Force CDC-EHDI survey compatible with the CDC- EHDI Data Committee recommendations developed in collaboration with DSHPSHWA and other partners several states provided feedback EHDI Screening and Follow-Up Survey

TM Requests to fill out DSHPSHWA survey were conducted in the Fall following the calendar year CDC-EHDI survey is to be completed in January, one year after the calendar year EHDI Screening and Follow-Up Survey

TM DSHPSHWA survey was paper based single page entered manually into a database CDC-EHDI survey is web-based and submitted electronically 3 sections (1-3-6, type/severity, demographics) automatic calculations built-in error checks EHDI Screening and Follow-Up Survey

TM DSHPSHWA survey used actual or estimated number of live births CDC-EHDI survey uses total occurrent births reported by the jurisdictional Vital Records Office EHDI Screening and Follow-Up Survey

TM DSHPSHWA survey collected information on legislation and hospital reporting CDC-EHDI survey only requests information definitions are more restrictive includes more demographic information EHDI Screening and Follow-Up Survey

TM DSHPSHWA survey requested number of newborns who were screened for hearing before hospital discharge still to be reported for MCHB National Performance Measure #12 includes infants referred for outpatient screening, whether completed or not CDC-EHDI survey requests data for the final hearing screening disposition EHDI Screening and Follow-Up Survey

TM DSHPSHWA Survey (circa 2000)

TM CDC-EHDI Survey

TM DSHPSHWA Survey (circa 2004)

TM CDC-EHDI Survey

TM CDC-EHDI Survey

TM DSHPSHWA Survey (circa 2004)

TM CDC-EHDI Survey

TM DSHPSHWA Survey (circa 2004)

TM CDC-EHDI Survey

TM CDC-EHDI Survey

TM CDC-EHDI Survey

TM The purpose of the CDC-EHDI survey is to report our progress towards assuring all infants and children with hearing loss are identified and receive intervention as soon as possible. EHDI Screening and Follow-Up Survey