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Mt. Hope Family Center

Fetal Alcohol Spectrum Disorders Research Studies

Families Moving Forward Connect (FMF) Pro

Principal Investigators

Funder

  • National Institute on Alcohol Abuse and Alcoholism

Project Summary

The mental health workforce serving children and families receives limited training on fetal alcohol spectrum disorders (FASD) and reports low competence in identifying and serving individuals with this prevalent condition. This project’s primary objective is to develop and evaluate a training program to improve mental health providers’ knowledge and skills in routine screening of prenatal alcohol exposure, diagnosis of FASD (using DSM-5 criteria), and use of essential elements of FASD-informed care. The training program, Families Moving Forward (FMF) Connect Pro, aims to establish a continuum of care with the standard FMF Program, from which it is derived, and the FMF Connect self-directed caregiver app.

A randomized controlled trial was initiated in March 2024, with targeted recruitment of providers through an hour-long Introductory Webinar. Providers are randomized into one of three groups: 1) ECHO (Extension for Community Healthcare Outcomes) delivery— which involves synchronous didactic- and case-based learning to provider groups; 2) Self-directed delivery— accessed independently through a website; and 3) a Waitlist control group that receives the training through self-directed delivery after 6 months.

This project is a part of a larger initiative to leverage technology to increase the quality of life across the lifespan for people with FASD.

Visit the study site to learn more: https://providers.fmfconnect.com/.

Contact for Questions

Study Team: fmfconnect@urmc.rochester.edu
Project Coordinator: Alicia Roth, (585) 275-2991 x 334

My Health Coach app for Adults with FASD

Principal Investigators

Funder

  • National Institute on Alcohol Abuse and Alcoholism

Project Summary

Adults with fetal alcohol spectrum disorders (FASD) experience many barriers to care. Research on the effects of prenatal alcohol exposure during adulthood is limited and few providers have the knowledge and skills to effectively serve this population. Adults with FASD need reliable and accessible information to inform decision making about their health and well-being. Our team previously developed a prototype for a novel mobile health (mHealth) application (“app”), currently called “My Health Coach,” to directly provide adults with FASD evidence-based education about their condition and tools to promote their own self-management and health advocacy goals. The app’s development was informed by an advisory board of adults with FASD and has been refined to be developmentally appropriate. A randomized control trial testing the effectiveness of the My Health Coach app is expected to begin in early 2025. The study will test whether the app improves the quality of life, self-management, and self-determination of adults with FASD.

Contact for Questions

Study Team: myhealthcoach@urmc.rochester.edu
Project Coordinator: Alicia Roth, (585) 275-2991 x 334

Thrive – Person Centered Planning: A Scalable FASD Informed Intervention

Principal Investigators

Funder

  • National Institute on Alcohol Abuse and Alcoholism

Project Summary

This study aims to develop and test a new intervention called “Thrive” for young adults with fetal alcohol spectrum disorders (FASD). The main goal of the Thrive Intervention is to teach young adults with FASD to use their support systems to help make progress towards goals that are important for them. This intervention will utilize a person-centered planning approach to prioritize the current goals of young adults while teaching the importance of gaining skills that encourage interdependence on the young adult’s network, such that one can gain new skills while simultaneously utilizing the supports of those around them. The Thrive program takes about 12-15 sessions and involves 4 stages: 1) Identification, 2) Network engagement, 3) Goal Setting and Planning, and 4) Implementation and Monitoring. During the Thrive program, the young adult works with a facilitator on Zoom. After the first stage, the young adult and facilitator invite members of the adult’s social network to participate in subsequent stages of the program.

A smaller-scale usability study testing the intervention and further informing its development is prepared to launch in early 2025. This study will be followed by a larger randomized control trial in late 2025-early 2026.

Contact for Questions

Study Team: thrivelab@urmc.rochester.edu
Project Coordinator: Emily Speybroeck, (585) 275-2991 x 339

Dialectical Behavioral Therapy for Adolescents with Fetal Alcohol Spectrum Disorders (FASD)

Principal Investigators

Funder

  • National Institute on Alcohol Abuse and Alcoholism

Project Summary

This study aims to test the feasibility of dialectical behavior therapy for adolescents (DBT-A) with fetal alcohol spectrum disorders (FASD). In partnership with a community mental health agency, adolescents with FASD and their caregivers will participate in an already existing comprehensive DBT-A program. This program has been adapted for neurodivergent teens, including the development of trainings for mental health clinicians on FASD. The aim of the current study is to assess the acceptability of DBT-A from the perspective of teens, caregivers, and clinicians. Additionally, barriers and facilitators of implementing DBT-A with teens with FASD, as well as the feasibility of the research protocol will be assessed to inform later larger-scale trials. The study is actively recruiting and is expected to run thorough 2025.

Contact for Questions

Project Coordinator: Maddy Rockhold

Fetal Alcohol Spectrum Disorder (FASD) – Nurse Practitioner Training

Principal Investigator

  • Lynn Cole, DNP
  • Erin Baylor

Funder

  • University of Rochester’s Clinical and Translational Science Institute (CTSI)

Project Summary

Existing literature on nursing roles related to fetal alcohol spectrum disorders (FASD) have largely focused on prevention, screening, referral, case management, and health teaching. Knowledge is limited in how nurse practitioners contribute to the diagnosis and care for these individuals. The current study is the first stage in a larger initiative to expand the skills and capacity of nurse practitioners to provide FASD-informed care. Survey data will be collected from the directors of graduate nursing programs to assess the degree to which FASD is present in the nursing curriculum. This study is actively recruiting and is expected to run through the winter of 2025.

Contact for Questions

Study team: FASD_nurse@urmc.rochester.edu