Bringing Cutting-edge Longitudinal Pediatric Research to the Prairie: A Story of Collaboration and Innovation

• In Event: 2-096 - Advances in Community Engagement and Measurement in Longitudinal Cohort Studies

Integrative Statement

Historically, American Indians in the Northern Plains have had infant mortality rates two to four times higher than the national average. This led to many tribes seeking answers for questions on why their rates were so high and finding preventable solutions. The Safe Passage Study has its roots in continued exploration of the role of prenatal alcohol and smoking exposures in infant mortality. This multi-disciplinary, multi-site study brought cutting-edge research to the Dakotas to answer questions related to potential mechanisms, early predictors, and associations of early exposures to a variety of health outcomes. This work expanded to include the entire region. A cohort of 4400 mothers and infants participated, and the study had over 86% compliance with all study visits and a pregnancy outcome ascertainment rate of 96.5%. In addition, over 98% provided consent to be contacted for future studies.

Our work has now expanded to include additional NIH-funded studies, including clinical trials and continued observational studies with this cohort. The NIH Environmental influences in Child Health Outcomes (ECHO) initiative, which was created to understand the effects of environmental exposures on child health and development, allows for continued studies to build upon the wealth of prenatal and infancy data in this unique longitudinal cohort. Health outcomes under study are now expanding to include asthma, neurodevelopment (including autism and ADHD), obesity, pre-, peri-, and postnatal outcomes, as well as positive health.

This presentation will include the structure we put into play for each study to keep multiple sites and investigators coordinated and productive and the community engagement practices and dissemination strategies used to maintain and grow longitudinal cohort studies. This work was only possible through active community engagement and input in to all study activities and processes. The tribes also provided specific guidance on genetics studies, sharing of data with outside investigators, and structure of the consent process. This foundation of community-based research and multi-disciplinary science created a sustainable research infrastructure that continues to thrive after 15 years.

Author

• Amy J Elliott, Avera Research Institute
  Presenting Author