1. 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 Critical Importance of VR for EHDI John Eichwald, EHDI Team Lead John Eichwald, EHDI Team Lead The findings and conclusions in this presentation have not been formally disseminated by the Centers for Disease Control and Prevention and should not be construed to represent any agency determination or policy.

2. TM Under Congressional authority the CDC-EHDI program is directed to: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 Data

3. TM To evaluate the accuracy of previously reported screening rates, occurrent birth data from the CDC’s National Center for Health Statistics (NCHS) was used to recalculate newborn hearing rates for years 2000 – 2004To evaluate the accuracy of previously reported screening rates, occurrent birth data from the CDC’s National Center for Health Statistics (NCHS) was used to recalculate newborn hearing rates for years 2000 – 2004 Why a New National EHDI Survey? Marcus Gaffney, MPH Denise Green, MPH

4. TM Methods Analyzed state data for years 2000 – 2004Analyzed state data for years 2000 – 2004 – Estimated screening data Source: Directors of Speech and Hearing Programs in State Health and Welfare Agencies’ (DSHPSHWA)Source: Directors of Speech and Hearing Programs in State Health and Welfare Agencies’ (DSHPSHWA) – States reported the number of children born and screened in their state by year

5. TM Methods Recalculated screening rates using occurrent birth data for the denominatorRecalculated screening rates using occurrent birth data for the denominator – Provided by CDC’s National Center for Health Statistics (NCHS) Screening rates based on NCHS occurrence data were compared to the rates calculated using the state reported birth dataScreening rates based on NCHS occurrence data were compared to the rates calculated using the state reported birth data

6. TM Results - National 20002001200220032004 % DSHPSHWA51.065.882.287.391.7 % NCHS51.265.680.385.490.1

7. TM Findings The difference in national screening rates calculated using the # of births reported by states and the NCHS birth data was relatively small.The difference in national screening rates calculated using the # of births reported by states and the NCHS birth data was relatively small. – The screening rates based on the state reported birth data were on average 1.3% higher than the NCHS derived rates Larger variations in screening rates were observed among some individual statesLarger variations in screening rates were observed among some individual states

8. TM Differences in State Screening Rates of 4% or More

9. Summary of Differences in Screening Rates

10. TM Hearing Screening Benchmarks How do these differences in screening rates affect the number of states who reach the Joint Committee for Infant Hearing (JCIH) screening 2000 benchmark of 95%How do these differences in screening rates affect the number of states who reach the Joint Committee for Infant Hearing (JCIH) screening 2000 benchmark of 95%

11. TM JCIH 95% Screening Benchmark

12. TM States Exceeding the JCIH Benchmark Based on NCHS Data

13. 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 2006 EHDI Survey Results

14. 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: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 “1-3-6” EHDI GoalsNational “1-3-6” EHDI Goals Healthy People 2010 Objective 28−11Healthy People 2010 Objective 28−11 CDC PART 1 and GPRA 2 OMB performance measuresCDC PART 1 and GPRA 2 OMB performance measures EHDI Screening and Follow-Up Survey Program Assessment Rating Tool 1 Government Performance Results Act 2

15. TM EHDI Screening and Follow-Up Survey

16. TM Preliminary 2006 EHDI Data 50 Respondents for 2006 (as of May 28, 2008)50 Respondents for 2006 (as of May 28, 2008) –46 States, 3 Territories, and the District of Columbia –46 states, 2 territories, & DC reported for 2005 Some respondents only provided data related to hearing screening or partial year dataSome respondents only provided data related to hearing screening or partial year data Not yet submitted: DE, IL, NV, OH, PR, VINot yet submitted: DE, IL, NV, OH, PR, VI

17. TM Preliminary 2006 Screening EHDI Data Occurrent Births (EHDI systems): 3,854,319Occurrent Births (EHDI systems): 3,854,319 –preliminary NCHS births (90.3%) –compared to 3,982,026 reported for 2005 Documented screen: 91.2%Documented screen: 91.2% –3,555,227 infants –range = 38.3% ↔ 99.2% –91.5% reported for 2005 (3,643,048) using NCHS birth data

18. TM Not Passing (documented final screening): 2.1%Not Passing (documented final screening): 2.1% – 73,837 (50 respondents) – 2.0% reported for 2005 (45 respondents) Documented hearing Loss: 4,091 infants (5.8%)Documented hearing Loss: 4,091 infants (5.8%) – 48 respondents – 5.2% reported for 2005 (3,347) – 1.2 per 1,000 infants screened – 1.0 per 1,000 reported for 2005 Preliminary 2006 Diagnostic Data

19. TM Lost to follow-up/Lost to documentation 32,496 (46.3%) of infants not passing the screening process are classified as: unable to contact / unresponsive / unknown32,496 (46.3%) of infants not passing the screening process are classified as: unable to contact / unresponsive / unknown –range = 0.0% ↔ 99.0% –compared to 38,619 (59.9%) for 2005 Preliminary 2006 Diagnostic Data

20. TM Preliminary 2006 Intervention Data 46 jurisdictions reporting46 jurisdictions reporting 3,414 (87.4%) of infants with hearing loss were referred to Part C Early Intervention (EI)3,414 (87.4%) of infants with hearing loss were referred to Part C Early Intervention (EI) – compared to 2,808 (83.9%) for 2005 Part C enrollmentPart C enrollment – 2,051 documented enrollment in Part C EI – 1,974 reported for 2005

21. 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 New EHDI Cooperative Agreements

22. TM New EHDI Cooperative Agreements Purpose (1) enhance the tracking and surveillance systems for the EHDI program to accurately identify, match, and collect unduplicated individual identifiable data (2) enhance capacity to accurately report the status of every occurrent birth throughout the EHDI process (3) develop and enhance the capacity to integrate the EHDI system with other screening, tracking and surveillance programs

23. TM New EHDI Cooperative Agreements Awardees’ activities: “Collaborate with multiple sources including vital records, birth defects registries, immunization registries, bloodspot programs, and Part C and other early intervention services to increase data sharing, integration and linkage.”Awardees’ activities: “Collaborate with multiple sources including vital records, birth defects registries, immunization registries, bloodspot programs, and Part C and other early intervention services to increase data sharing, integration and linkage.” CDC activities: “Assist with State and Territorial EHDI program’s integration and linking efforts with vital statistics, immunization and other childhood registries.”CDC activities: “Assist with State and Territorial EHDI program’s integration and linking efforts with vital statistics, immunization and other childhood registries.”

24. TM New EHDI Cooperative Agreements Eligibility is limited to State/Territorial agencies because they have the public health authority to work collaboratively with multiple reporting sources including vital records, birthing facilities, diagnostic centers, audiologist, early intervention services, birth defect registries, immunization registries and bloodspot programs to ensure accurate monitoring and tracking of all births statewide.Eligibility is limited to State/Territorial agencies because they have the public health authority to work collaboratively with multiple reporting sources including vital records, birthing facilities, diagnostic centers, audiologist, early intervention services, birth defect registries, immunization registries and bloodspot programs to ensure accurate monitoring and tracking of all births statewide.

25. TM New EHDI Cooperative Agreements Three (3) years project period funding: $21,600,000Three (3) years project period funding: $21,600,000 Approximate Number of Awards: 45Approximate Number of Awards: 45 Approximate Average Award: $150,000/yearApproximate Average Award: $150,000/year Anticipated Award Date: July 1, 2008Anticipated Award Date: July 1, 2008

26. 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 Future VR EHDI Partnerships

27. Trivia Quiz Famous Partners: Who are the only "twosome" to have a Star on the Hollywood Walk of Fame, other than Roy Rogers & Trigger?

28. Future VR EHDI Partnerships STEVE and EHDI: a harmonizing match

29. TM Thank you jeichwald@cdc.gov Updated data reports will be made available on the EHDI website: www.cdc.gov/ncbddd/ehdi/data.htm or Google “EHDI data”