A report on the second annual Workshop on Fetal Alcohol Spectrum Disorders Prevention and Clinical Guidelines Research hosted by the Uniformed Services University of the Health Sciences (USUHS) in conjunction with FASD United has been published in the journal BMC Proceedings. Organized as part of a four-year, federally-funded health services research initiative on FASD in the U.S. Department of Defense Military Health System (MHS), the workshop explored the initiative’s focus and progress, examined current knowledge and practice in the research and clinical spheres, and identified potential strategies to further improve prevention, screening, diagnosis, interventions, and family support. 

One hundred and thirty attendees from academia, healthcare, federal agencies, and patient advocacy organizations participated in the event on September 20, 2023, in Washington, DC to review and discuss the initiative’s lines of effort, including assessments focused on community needs and population health, the use of electronic health records (EHRs) for predictive analytics to improve early diagnosis and patient outcomes, and the development of a telehealth hub-and-spoke model. Dr. Tracey Pérez Koehlmoos, Director of the Center for Health Services Research at USUHS, opened the proceedings that begin with a State of the Science presentation by Dr. Christie L. M. Petrenko from the University of Rochester and Mt. Hope Family Center followed by Dr. Ilse Rivera of the Henry M. Jackson Foundation (HJF) who discussed an environmental scan of the MHS that USUHS researchers recently conducted across the FASD continuum of care to learn what resources the MHS offers to address alcohol use in general and for pregnant women specifically, as well as what FASD-specific resources exist.

Dr. Michael Charness, VA Boston Healthcare System, discussed how the lack of standardized criteria to define prenatal alcohol exposure and FASD leads to challenges when comparing prevalence rates and research findings, and described an ongoing effort of the International Consensus Committee on Research Classification of FASD to create a single classification system. Dr. Elizabeth Lee from USUHS led a panel discussion that explored how a planned community needs assessment will improve the understanding of MHS members’ experiences caring for individuals with FASD. Also presenting was Dr. Philip May, University of North Carolina at Chapel Hill, who discussed research insights into FASD prevalence and its risk factors. He stated that based on his studies, a conservative estimate of the FASD prevalence rate in the United States is 3 to 10%, with the mean at 6.5%.

Just as there is no standard research definition for FASD, there is also no standard surveillance case definition. Dr. Shin Y. Kim, Centers for Disease Control and Prevention (CDC), described how I-FASD, a public health surveillance partnership involving Emory University and the Minnesota Department of Public Health, is examining the feasibility of using existing clinical healthcare data, healthcare claims databases, and caregiver-reported estimates to inform surveillance efforts. FASD United’s Jenn Wisdahl moderated a panel of speakers living with FASD. Panelists included two members of the Adult Leadership Committee of the advocacy organization Adult Leadership Collaborative (ALC) FASD Changemakers, CJ Lutke and Justin Shepherd; self-advocate Brenna French; and Julia Rivera, U.S. Air Force (Ret.), mother of a child with FASD.

Drs. Eric Flake, HJF, and Jeanmarie Rey, USUHS, discussed a major goal of the initiative to implement and evaluate a telehealth hub-and-spoke model for FASD diagnosis and care within the MHS. Flake and Rey introduced three panelists who discussed multiple aspects of designing and implementing a successful telehealth hub-and-spoke model for FASD-responsive systems of care, including the benefits of telehealth, challenges of diagnosing FASD, addressing stigmas, and the importance of screening and partnerships. The panelists were Hope Finkelstein, Alaska Department of Health; Douglas Waite, Bronxcare Health System; and Vincent C. Smith, Boston Medical Center.

For the workshop’s final session, representatives from federal agencies discussed current and planned federal activities aimed at advancing the understanding of FASD and improving care for individuals and families. Dr. Bill Dunty shared context and program updates from the National Institute on Alcohol Abuse and Alcoholism (NIAAA), an institute of the National Institutes of Health whose mission is to generate and disseminate knowledge about alcohol’s effects on people’s health in order to improve lifelong diagnosis, prevention, and treatment of alcohol-related problems. Dr. Tatiana Balachova, NIAAA, the Executive Secretary of the Interagency Coordinating Committee on Fetal Alcohol Spectrum Disorders (ICCFASD), provided an overview of ICCFASD efforts. Elizabeth Parra Dang shared updates on CDC efforts including the FASD National Partner Network, a collaborative framework of provider, non-clinical professional, and family support organizations that work to improve the lives of families with FASD. Sharon Newburg-Rinn spoke about FASD-related initiatives of the Children’s Bureau (CB) of the U.S. Department of Health and Human Services (HHS). The work of the CB, within the HHS Administration for Children and Families (ACF), often intersects with FASD, as it collects data on children in contact with the Child Welfare System, a disproportionate number of whom have a history of prenatal alcohol or drug exposure. Sonsy Fermín described how the Health Resources and Services Administration trains multiple diverse provider cohorts across the U.S. to screen and provide interventions or referrals to pregnant people, screen children and adolescents for PAE, and connect both groups with FASD services and care.

Read the full report to learn more about the USUHS FASD research initiative and for details on the facets of FASD and perspectives of the presenters, moderators, and panelists.