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Samara Viner-Brown, MS Emerging Issues in MCH Webcast 1-25-07

INTERACTIONS BETWEEN BIRTH DEFECTS PROGRAMS AND LOCAL HEALTH DEPARTMENTS: Preliminary Results from a Survey Conducted by the National Birth Defects Prevention Network (NBDPN) and NACCHO. Samara Viner-Brown, MS Emerging Issues in MCH Webcast 1-25-07. NBDPN SURVEY DEVELOPMENT GROUP.

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Samara Viner-Brown, MS Emerging Issues in MCH Webcast 1-25-07

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  1. INTERACTIONS BETWEEN BIRTH DEFECTS PROGRAMS AND LOCAL HEALTH DEPARTMENTS:Preliminary Results from a Survey Conducted by the National Birth Defects Prevention Network (NBDPN) and NACCHO Samara Viner-Brown, MS Emerging Issues in MCH Webcast 1-25-07

  2. NBDPN SURVEY DEVELOPMENT GROUP • Tim Flood (AZ) • Russ Kirby (AL) • Cara Mai (CDC) • Russel Rickard (CO) • Sam Viner-Brown (RI)

  3. DIRECT INTERACTIONS BETWEEN STATE BIRTH DEFECTS PROGRAMS AND LHDs n = 43 Unknown (n = 1) No Yes (n = 19) (n = 23) “Does your State Birth Defects Program directly interact with local health departments/regional offices?”

  4. DIRECT INTERACTIONS BETWEEN STATE BIRTH DEFECTS PROGRAMS AND LHDs • Data Dissemination and Utilization • Cluster Investigation • Referral and Direct Services • Resources • Prevention • Data Requests/Data Sharing

  5. DATA DISSEMINATION AND UTILIZATION n = 22

  6. CLUSTER INVESTIGATION 65.2% (15/23) reported they offer services related to cluster investigations, but rarely analyze data in response to cluster investigations.

  7. REFERRAL AND DIRECT SERVICES n = 23

  8. OTHER REFERRAL ACTIVITIES • Refer parents/affected families directly to all potential assistance, including Health Department services • Referrals to genetics program (NTD recurrence prevention); Early Intervention and Genetic Evaluation • Developed educational materials for use at hospitals and clinics that include information regarding available services • Referrals to local/regional offices of CSHCN programs for case management and referrals

  9. RESOURCES n = 23

  10. PREVENTION n = 23 Other prevention activities: promote January BD Prevention, provide data to assess trends, provide professional education, participate on folic acid task force and mass media tours

  11. DATA REQUESTS/AVAILABILITY Types of data requested/provided to LHDs: prevalence data, counts and rates of specific birth defects (e.g., neural tube defects), cluster concerns, utilization rates for hospital.

  12. DATA REQUESTS: BIRTH DEFECTS PROGRAM TO LHDs Types of Data Requested By Birth Defects Programs From LHDs: reports from any LHD that has provided care or services to a child diagnosed with a reportable condition, all cases of neural tube defects to the Birth Defects Program, service referrals and outcome information (status of cases that were referred to local county agencies for follow-up or services provided to families)

  13. OTHER ENTITIES THAT PROVIDE SERVICES AT THE LOCAL LEVEL • State MCH and/or CSHCN programs • CSHCN case management units located in LHDs • Specialty clinics, genetic centers, regional perinatal centers. Local private health care practitioners • State and county health department programs (WIC, family planning clinics) provide folic acid education; distribute multivitamins to low-income women • The state medical school has a program to provide pediatric care to children with special health care needs • All local county health departments provide some form of prevention or referral services • Federal and State Healthy Start Coalitions • March of Dimes, ARC chapters, Family Voices, parent support programs, local hospitals, Early Intervention, Human Services/Social Work Services

  14. OTHER SERVICES WOULD LIKE TO SEE AT LOCAL LEVEL • Additional materials/fact sheets to LHDs for birth defects causes and prevention • More services are needed in general -- lack of specialists (e.g. geneticists) is a problem • Assure screening and counseling for adequate folic acid intake are routinely provided at all prenatal visits • Birth defects should be included in state and local MCH reports • Protocols for local public health staff to provide follow up to families who have had an NTD affected pregnancy • Service utilization provided by private insurance

  15. STATE EXAMPLES

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