1. CDC’s Sudden Unexpected Infant Death Case Registry June 4, 2008 National Association for Public Health Statistics and Information Systems Annual Meeting Orlando FL Lena Teresa Camperlengo RN, MPH, DrPH candidate Maternal and Infant Health Branch Division of Reproductive Health National Center for Chronic Disease Prevention and Health Promotion Centers for Disease Control and Prevention

2. Presentation outline Definitions of SUID, SIDS CDC’s SUID Initiative Activities Development of the SUID Case Registry

3. Background

4. Some causes of deaths that occur suddenly and unexpectedly during infancy SUID SIDS Accidental suffocation UnknownPoisoning Metabolic disorders Hypothermia/ Hyperthermia Neglect or homicide

5. Explained vs. Unexplained Explained Accidental suffocation Poisoning Head injury Metabolic disorder Neglect or homicide Hypo or hyperthermia Unexplained SIDS Cause unknown or unspecified SIDS, but cannot rule out suffocation from unsafe sleep environment

6. Sudden Infant Death Syndrome (SIDS) “sudden death of an infant under one year of age which remains unexplained after a thorough case investigation, including performance of a complete autopsy, examination of the death scene, and review of the clinical history.” * Willinger M, James LS, Catz C. Pediatr Pathol 1991.

7. Why be Concerned with SUID? SUID rates comparable to birth defects – 4600 SUID deaths per year – 2500 SIDS deaths per year SIDS – Leading cause of postneonatal mortality (age 1 month- 12 months) – Third leading cause of infant mortality Accidental suffocation & strangulation in bed – Rates have tripled in last decade – 4.1 to 12.5 deaths per 100,000 live-births from 1994 to 2004 Preventable Infant Mortality?

8. Mortality rates due to SIDS, U.S., 1989-2005

9. Infant Mortality Rates due to SIDS and Other SUID* USA, 1989-2001 * SUID include cause; accidental suffocation and strangulation in bed; other accidental suffocation and strangulation; and neglect, abandonment and other maltreatment syndromes.

10. Diagnostic Shift? Decline in SIDS is offset by increasing rates of: – Cause unknown/unspecified – Other SUID (suffocation, wedging, overlaying, poisoning) This change in classification can be explained by: – How investigations are conducted – How diagnoses are made * Shapiro-Mendoza CK, Tomashek KM, et. al., Am J Epidemiol, 2006.

11. Modifiable Risk Factors: Potentially Preventable Smoking and substance abuse – Prenatal maternal – Postnatal exposure cigarette smoke Prone (face down) and side sleeping Soft sleep surfaces and loose bedding Overheating Bed sharing with: – intoxicated individual – caregiver who smokes – other than a parent

12. CDC’s SUID Initiative Activities

13. Goal of the CDC’s SUID Initiative – Standardize and improve data collected at infant death scenes – Promote consistent diagnosis of cause of death on SUID – Improve national reporting of SUID estimates – Prevent SUID by using improved data to identify those at risk and support prevention programs

14. SUID Initiative Activities Updated SUIDI Reporting Form (2006) Created SUID Investigation training curriculum and support materials Conducted 5 regional SUIDI Training Academies Trained more than 250 individuals – These have gone on to train more than 11,000 individuals Pilot study: is case registry feasible?

15. Development of the SUID Case Registry

16. Pilot Study: 7 States 2006-2007 feasibility study – is a case registry possible? Built on NVDRS state protocols Added infant death component Case definition: ICD-10 codes Asked states to collect data from all eligible cases from 2004-2005 (retrospective) Abstracted data from a variety of sources

17. Principal Data Sources Death certificates SUID Investigation Reporting Form Coroner and medical examiner records Autopsy Results Chart Review Lab work (toxicology, metabolic, X-Rays) Law enforcement reports Birth certificates Child Fatality Review/Child Death Review Medical records EMS/ED Records

18. Case-finding Process Death Certificate used to identify cases – ICD 10 codes Deaths meeting the case definition were identified from those received at the state DOH

19. Pilot Study Program Model

20. A major increase in the capture of SUIDI information will depend on changes in death scene investigation protocols and/or their implementation. We found that much of the requested SUIDI information was just not available in existing documentation. -- Georgia SUID Pilot Evaluation Report, 2007

21. From Pilot to National Case Registry Two national information gathering sessions: – One: Program model, partners, case definition – Two: Death classifications, variables to include Suggestion to build on existing web based system (National Child Death Review?) Case registry idea gaining attention

22. Challenges Research built on good death scene investigation and autopsy information – Need to continue efforts for quality, consistent death scene information and autopsy – Identifies gaps in death scene investigation Including all possible partners can expand scope Capturing more data than we can afford or need

23. Next Steps Second Information gathering session – July 31- August 1 at CDC Formalize program model Decide on minimal set of variables Determine classification system – Was a quality death scene and quality autopsy done? Buy in from all partners Explore web based data collection system Test the model

24. CDC SUID Initiative Carrie Shapiro-Mendoza, PhD, MPH Lena Camperlengo, RN, MPH, DrPH (c) Shin Y. Kim, MPH Tai Baker, MPH, PHPS Fellow Centers for Disease Control and Prevention 4770 Buford Highway, NE, Mailstop K-23 Atlanta, Georgia 30341-3717 770-488-6250 http://www.cdc.gov/SIDS.htm CDC Disclaimer: CDC, our planners, and our presenters wish to disclose they have no financial interests or other relationships with the manufactures of commercial products, suppliers of commercial services, or commercial supporters. Presentations will not include any discussion of the unlabeled use of a product or a product under investigational use.