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Language, Executive Function, and Quality of Life in FMR1 Premutation Carriers
This study aims to determine the extent to which language may predict outcomes associated with fragile X-associated tremor/ataxia syndrome (FXTAS) and the FMR1 premutation. We are recruiting adults who do and do not have the FMR1 premutation between the ages of 30 and 65 years.
Who can participate?
Males and females with and without the fragile X premutation aged 30-65 whose primary language is English may be eligible to participate.
What will happen in the study?
If the individual qualifies and decides to participate in this research study, they will complete 1-2 hours of online tasks with an examiner.
The following is a list of some of the tasks that participants will complete during the study:
Language assessments
Cognitive testing
Standardized tests
Questionnaires
What are the benefits of this research?
There will be no immediate benefits to participating in this research. However, your participation may benefit other people in the future by helping us learn more about how language is affected among people with the Fragile X premutation.
Participants will be compensated for their time.
What are the risks of this research?
A potential risk of participation includes the potential for a breach of confidentiality, although the study involves protections to minimize such risks. In addition, participants may become embarrassed or anxious when they are asked study questions or are completing study tasks.
There may be other risks that we do not know about yet.
Will I be paid to complete this study?
Participants receive $50 for their participation in the study.
Improving Law Enforcement Communication with Autistic Individuals
The Lifespan Language Lab at the University of Arizona is collaborating with law enforcement to develop effective supports for autistic individuals and their families. We need your help!
Qualifications
You may be eligible to participate in this volunteer opportunity if you are a member of law enforcement and have not completed in-person training through U of A.
Interest
If you are interested in participating as a volunteer, please reach out to lifespanlanguage@email.arizona.edu or fill out the participation form below!
More About This Project
Adverse interactions with police and law enforcement officers are common for individuals with autism and related conditions. However, there is very little training for officers regarding how to best support these interactions. The goal of this work is to understand the experiences of law enforcement related to autism and autism-related training programs, and build training programs for Arizona law enforcement.
The Lifespan Language Lab is currently collaborating with law enforcement officers to support interactions between officers and autistic individuals. Our efforts have included helping to establish the Blue Envelope Program in the state of Arizona. Drivers participating in the program receive a blue envelope in which they can place important documents like their license, registration, and insurance. Our hope is that this program will create a way for officers and autistic individuals to communicate with comfort and clarity during traffic stops. The Blue Envelope Program is available at all ADOT MVD offices.
For more information, please see the links below. If you are a member of law enforcement or would like to collaborate on safety-related projects for the community, please reach out to lifespanlanguage@email.arizona.edu or fill out the participation form above.
Collaborating with Native Nations in Arizona
In partnership with leaders from Native Nations in Arizona, researchers at the University of Arizona are recruiting participants to learn more about their experiences related to autism and other developmental conditions. The purpose of this research is to understand perceptions of genetic testing, experiences with diagnosis, and to determine areas of need as defined by the community.
Qualifications
Males and females aged 18 years or older who are affiliated with a Native Nation in Arizona may be eligible to participate.
Commitment
Total participation in this study is estimated to take 1-1.5 hours. Participation involves completing an interview with the research team.
Compensation
Participants receive $50 for their participation in the study.
Interest
If you are interested in participating in this research or would like more information, please reach out to lifespanlanguage@email.arizona.edu or fill out the participation interest form below!
More About This Project
The lab has received funding from the Harmony Biosciences Progress at the Heart program to establish relationships with Arizona Native American communities. With this partnership, we hope to gain a broader understanding about perceptions related to genetic testing and fragile X syndrome (FXS), as well as autism diagnosis. Our understanding of the prevalence of FXS across diverse cultural groups is based on very low representation of Native Americans (<1%), suggesting prominent barriers to inclusion in research. Native Americans are less likely to participate in genetics research due to systemic barriers (e.g., mistrust, cultural and spiritual beliefs). It is crucial to build trusting relationships with this population to expand community participation in genetics research and extend awareness of FXS. As a first step, we are partnering with local tribal nations to conduct focus groups with Tribal Leaders. Together, we will develop culturally responsive educational program(s) pertaining to FXS and autism, and programs will be strongly informed by local practices and beliefs.
If you or someone you know are affiliated with an Arizona Nation, please reach out to lifespanlanguage@email.arizona.edu or fill out the participation form above.
Leveraging Machine Learning to Support Autism Diagnosis
The lab is actively collaborating with researchers in the Eller School of Management’s Department of Management Informational Systems. Together with this team, we are looking into ways to streamline the autism diagnostic process by using machine learning techniques. The team leverages de-identified information collected from hospitals, parents, and self-advocates, in order creating tools that may be beneficial to families and healthcare providers alike. Projects include:
Creating a user interface to identify key autism traits via machine learning
Determining how useful machine learning is for caregivers and providers
Using video to document “snapshots” of relevant language and behavioral traits
If you have interest in ongoing projects, please reach out to lifespanlanguage@email.arizona.edu or fill out the participation form below.
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