Research
Developmental Disability Abuse Prevention and Response
Individuals with developmental disabilities are 7-12 times more likely to face sexual abuse than peers. At her previous institution, the University of Arizona, Dr. Edgin worked closely with her state council for advocacy and educational programs for persons with disability, and began work on sexual abuse prevention there. The MaP Lab will continue work on prevention and response to sexual abuse in collaboration with local and national organizations that work with individuals with developmental disability.
Progress to date: Policy brief on School Abuse Prevention in AZ schools, analysis of abuse prevention measures in AZ Medicaid systems, the inclusion of abuse and trauma in continuing medical education materials supported by NDSS, and funding from the Virginia Tech Whole Health Consortium to develop national stakeholder groups to support abuse prevention.
Understanding Children’s Abuse Reporting: Neuroscience and Policy Analysis, Bio5 and Udall Fellowship
This fellowship focused on sexual abuse prevention and policy for persons with disability. The proposed work from this fellowship will merge information across current state policies (specifically regarding interviewing methods), input from national organizations, memory science, and practitioners and scientists working on disability to determine what solutions may allow for tools for abuse prevention and facilitated reporting in these populations. The question is: Can we provide a solution that will help facilitate the safety of these individuals through the delivery of their reports, and alongside these methods, change the public’s perception of the validity of their reports?
This project combined expertise in memory science and disability with this fundamental policy issue, with the hope to provide informed programs that can allow for greater safety for persons with developmental disabilities.
DECIDAS Project, NIH funded (PI Dan Combs)
The overarching goal of this study is to develop an evidence-based framework to guide the approach to research assent for individuals with Down syndrome (DS) to participate in clinical trials. This will be achieved leveraging two existing resources. The first is a survey of a large pool of parents of individuals with DS who are interested in research participation recruited through DS-Connect and the LuMind-IDSC foundation. The second is the use of a validated pediatric tool, the modified MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR), to determine the ability of individuals with DS to make decisions about participation in clinical research.
Longitudinal Memory Narratives of Individuals with Fragile X Syndrome and Down Syndrome, NIH funded dataset
What did you do after school yesterday? Few studies have examined the content of verbal narratives in individuals with IDD. Expressive language samples are examined to investigate the reliability and stability of memory profiles of individuals with Fragile X syndrome and Down syndrome. This study re-examines longitudinal data collected over an 18-month period. Expressive language samples (descriptions of an event) are coded using the Autobiographical Interview scoring manual (Levine, Svoboda, & Moscovitch, 2005), allowing us to understand the content that is generated in their narratives, including level of detail. This is a collaborative project with Len Abbeduto and Angela Thurman at UC Davis.