CDC Holds SUID Case Registry Pilot Program: Grantees Share Success Stories

Atlanta, GA, Aug. 29-30

By Caroline Stampfel, MPH
Senior Epidemiologist, Women’s & Infant Health

The Centers for Disease Control and Prevention (CDC), along with many public/private partners, developed the Sudden Unexpected Infant Death (SUID) Case Registry (CR) Pilot Program to provide more comprehensive data to characterize SUID cases and to determine the factors in the sleep environment that contribute to SUID cases. The program, currently supports seven grantees – Colorado, Georgia, Michigan, New Jersey, New Mexico, New Hampshire and Minnesota, is a state-based surveillance system that supplements current vital, statistics-based surveillance methods building on the National Center for Child Death Review (NCCDR) system funded by the Health Resources and Services Administration Maternal and Child Health Bureau. The SUID-CR relies on multidisciplinary team review of several data sources – reports from death scene investigation, pathology and medical records. This population-based SUID surveillance is critical to researchers, medicolegal investigators and program planners who use this data to improve knowledge about SUID characteristics and risk factors, evaluate case investigation practices and identify high-risk groups to target interventions.

Grantee states shared lessons learned with the assembled partners and Colorado, Georgia, Michigan, New Jersey and New Mexico have completed two years of the project while New Hampshire and Minnesota were new grantees for 2010-2011. Each grantee state was asked to present two lessons learned, which was difficult since so much has been learned through these projects.

In Colorado, the two lessons shared were: utilize more staff time to conduct systematic follow-up with investigators/agencies and streamline the review process.The benefits of utilizing more staff time were to be able to collect more complete information, help build and maintain relationships, increase stakeholder buy-in, provide opportunities to market resources and have timely notification when changes occur. Streamlining the review process would include identifying new cases using data from vital statistics on a monthly basis and having all data-gathering activities completed before the review. The benefits of streamlining include the ability to review recent deaths with complete records available, having more review time to discuss risk/preventive factors and having more time to implement review-team recommendations.

Georgia shared several lessons learned on how case-registry staff could contribute to reviews, including encouraging, empowering, educating and engaging review teams. The strategies to do this included sending a knowledgeable person to each Child Fatality Review (CFR) team meeting to generate more complete and accurate data reporting from the team; providing Death Scene Investigation (DSI) tools and trainings to investigators to encourage more complete investigations and reports; giving review teams real-time death notifications to assist them in starting the review process in a timely manner; and providing data summaries to local review teams to help them see the products of their work, consider the effects and limitations of poor data quality and identify opportunities and activities.

The Michigan team highlighted quality assurance and utilization/expansion of networks for sharing lessons learned. Under quality assurance, the team has realized that although they proposed to do a random audit of 10 percent of cases, each and every case must be cleaned and prepared to ensure data quality. The team realized that they needed to fully utilize their existing networks, such as newborn screening results, birth records and access to medical examiner files, to obtain data for new variables.

In New Jersey, lessons learned centered on meeting preparation and participation. For successful case reviews,the team needed to gather information prior to the meeting from a variety of sources – child protective services, medical records, law enforcement/first responders, medical examiners and birth/death certificates. To ensure a successful review, the team receives records for review at least two weeks prior to the meeting and the coordinator completes a comprehensive review summary. Other keys to success were bringing a medical examiner to the table, including the SIDS Center, tracking missing variables to identify improvement areas, and sponsoring a statewide DSI training to educate/obtain buy-in from first responders.

New Mexico identified lessons learned regarding data integrity and prevention. Keys to success for data integrity include improving communication between the key staff and panel members; streamlining data gathering, entering and auditing processes; increasing panel membership; and providing training and feedback for investigators. Around prevention, the team highlighted developing partnerships and increasing collaboration between government agencies, local communities, hospitals and other stakeholders, as well as increasing advocacy and ownership of prevention recommendations.

The newest grantees shared lessons from their first completed year. Through this project, Minnesota identified instances where case reporting was incomplete and demonstrated a need for structured case definitions, including exclusion and inclusion criteria. The project has also enabled the team to establish contacts with county-level local review teams, channels for retrieving other sources of data and a mechanism to satisfy participants in an interagency data-sharing agreement. New Hampshire has identified key participants who should be invited to case reviews, including representatives from designated areas and local-level providers (law enforcement, EMS, health care providers, home visitors, etc.) who were involved in the case. The team has also realized that the SUID review meetings need to have different components from the existing child fatality reviews, they need to be held more frequently, more cases need to be reviewed per meeting and they need to have a different focus, which includes adherence to the case reporting system form.

For more information, contact Lena Camperlengo RN, MPH, DrPH (c) (770-488-6322 or gtx6@cdc.gov) or visit cdc.gov/sids/CaseRegistry.htm.