1. Birth Information Network VAHHS – Vermont Explor Meeting Vermont Department of Health Agency of Human Services May 1, 2006

2. Birth Information Network (BIN) Established by Vermont legislation in 2003 (18 V.S.A. § 5087) Statewide, population-level surveillance Selected birth defects and congenital conditions

3. BIN goals and objectives Improve health and quality of life  Early identification and timely intervention  Inform and guide quality improvement of health care delivery systems  Inform and evaluate prevention activities  Identify possible associations between prevalence and environmental exposure

4. Selected conditions 32 structural and chromosomal birth defects 7 metabolic and endocrine conditions Hearing loss Very low birthweight (<1500 grams)

5.  Leading cause of infant mortality  Severely impact ~150,000 children every year  Account for 30% of pediatric hospital admissions  Costs > $10 billion annually  Some are preventable Birth Defects

6. Selection criteria Evident in the first year of life Data sources available Responsive to early intervention Potential for prevention

7. Data sources Vital records (birth and death certificates) VDH Databases (CSHN) Facility reporting Medicaid claims data Interstate data exchange agreements

8. Birth Defect Reports  Anencephaly  Meningomyelocele/Spina Bifida  Cyanotic congenital heart disease  Congenital diaphragmatic hernia  Omphalocele  Gastroschisis  Cleft Lip with or without Cleft Palate  Cleft Palate alone  Down Syndrome  Suspected chromosomal disorder (Edwards’ and Patau’s Syndrome)  Hypospadias

9. Expected number of cases (Source: Inpatient discharge data 2000-2003) Hospital Admissions per Year Fletcher Allen Health Care - Medical Center120 Rutland Regional Medical Center9 North Country Hospital And Health Center6 Northwestern Medical Center6 Southwestern Vermont Medical Center6 Springfield Hospital6 Central Vermont Medical Center5 Copley Hospital5 Northeastern Vermont Regional Hospital4 Gifford Memorial Hospital3 Brattleboro Memorial Hospital2 Porter Medical Center2 Grace Cottage Hospital1 Mt. Ascutney Hospital And Health Center<1 Total175

10. Data elements requested Hospital contact information Patient identifiers Parent/guardian contact information Diagnostic information

11. Facility contact information Reporting source (hospital name) Medical record registrar (name; phone) Attending physician (name; phone) Pediatrician (name; phone) Patient transferred flag (yes/no) Facility name (if transferred)

12. Patient identifiers Infant’s name (first, last, mi) Infant’s date of birth (mm/dd/yyyy) Infant’s medical record number Infant deceased flag (yes/no) Infant date of death (if deceased) Infant foster care/adopted flag (yes/no)

13. Parent/guardian contact info Parent/Guardian (name) Mother’s maiden name (if applicable) Parent/Guardian mailing address (street/P.O. Box, city, state, zip)

14. Diagnostic information Diagnosis ICD-9-CM code(s) Comment(s) ICD-9-CM code 747.0 (Patent ductus arteriosus) ICD-9-CM code 756.79 (Gastroschisis, Omphalocele) Karyotype analysis flag (yes/no/pending) Karyotype (if performed) Diagnosis confirmed flag (yes/pending further tests)

15. Contact John Burley jburley@vdh.state.vt.us 863-7611 Peggy Brozicevic pbrozic@vdh.state.vt.us 863-7298