800
Participants
Start Date
June 28, 2023
Primary Completion Date
September 8, 2025
Study Completion Date
December 29, 2025
Acceptance and Commitment Therapy (ACT)
ACT will be deployed weekly for 12 weeks on an individual basis via secure Zoom. Treatments will be deployed by supervised graduate student clinicians under the supervision of a licensed psychologist.
Culturally Informed Cognitive Behavioral Therapy (CICBT), Individual
CICBT-Individual will be deployed weekly for 12 weeks on an individual basis via secure Zoom. Treatments will be deployed by supervised graduate student clinicians under the supervision of a licensed psychologist.
Culturally Informed Cognitive Behavioral Therapy (CICBT), Group
CICBT-Group will be deployed weekly for 12 weeks in small groups via secure Zoom. Treatments will be deployed by supervised graduate student clinicians under the supervision of a licensed psychologist.
Dialectical Behavioral Therapy (DBT)
DBT will be deployed weekly for 12 weeks in small groups via secure Zoom. Treatments will be deployed by supervised graduate student clinicians under the supervision of a licensed psychologist.
Durand Sleep Intervention
Durand Sleep Intervention will be deployed weekly for 12 weeks, alternating between individual and group formats, via secure Zoom. Treatments will be deployed by supervised graduate student clinicians under the supervision of a licensed psychologist or behavioral analyst.
RUBI Intervention
RUBI will be deployed weekly for 12 weeks in small groups via secure Zoom. Treatments will be deployed by supervised graduate student clinicians under the supervision of a licensed behavioral analyst.
Naturalistic Communication Intervention (NCI)
NCI will be deployed weekly for 12 weeks on an individual basis via secure Zoom. Treatments will be deployed by supervised graduate student clinicians under the supervision of a licensed behavioral analyst.
Self-Guided Resources
Participants will be provided a self-guided resource notebook that includes 12 weeks of content that parallels the topics examined in other support programs (child behavior management, child sleep, child communication, caregiver mental health, caregiver health behaviors, community connection)
Participation Enhancement Intervention (PEI)
"A standardized PEI intervention will be conducted by trained peer coaches who are also rare disorder caregivers. Each peer coach will work with their clients to complete a Change Plan Worksheet and will complete two booster sessions at midpoint and end of treatment. Coaches will also meet with their clients after follow-up data are complete to support connection back to community resources and patient-specific rare disorder communities."
RECRUITING
Purdue University, West Lafayette
University of Virginia
OTHER
University of Oregon
OTHER
University of Canterbury
OTHER
University of Missouri-Columbia
OTHER
Indiana University
OTHER
Georgia State University
OTHER
Purdue University
OTHER