Pilot and Try-Out of the Draft TPI

My name is Samri and I am a research participant recruiter from Miami University’s Later Language Development Lab. I am reaching out to you today with the opportunity to contribute to our NIH-supported research on the development of a social communication assessment tool which targets adolescents and young adults at the age of transition. We are currently seeking participants between the ages of 14 and 21 years old with a native proficiency in English and typical hearing. We are asking that participants meet one-on-one with a member of our research team for 1-1.5 hours via Zoom to answer a series of interview questions which probe their knowledge of how to communicate in different contexts. After, the participant will be paid the sum of $30-50 via Zelle for their involvement. This study is being conducted by Dr. Trace Poll from the Speech Pathology and Audiology Department at Miami University alongside Jan Petru from Elmhurst University, who is acting as our clinical consultant for the study.

What are the goals of the study?

Specifically, we are continuing research on our development of a social communication assessment tool tailored to adolescents and young adults preparing for the transition from high school to post-school contexts. This tool that we are developing is called the Transition Pragmatics Interview (or the TPI).

What will happen during the visit or online?

This commitment includes the signing of a consent form, the completion of a brief history form, and a 1-1.5 hour meeting via Zoom to answer interview questions probing their knowledge of how to communicate in different situational contexts.

How will this help families?

The information from this project provides information on the degree to which the TPI is a valid and reliable measure of social communication. Speech-language pathologists, special educators and related professionals currently lack assessment instruments that address the population and contexts targeted by the TPI. The project will indicate how the TPI may improve on clinical judgment, or the findings of instruments less targeted to the needs of adolescents and young adults with disabilities in transition programs. Fundamentally, the results will indicate how the TPI may be refined in order to become a more valid and reliable measure.

The objective of this study is to assess the stress level and engagement of students subjected to different forms of training. The subjects will include students and trainees with learning and/or developmental disabilities in addition to neurotypical students. The training will be delivered in multiple forms: pre-recorded single viewer, prerecorded with additional participants, pre-scripted live one-on-one and/or pre-scripted live with additional participants. We aim to determine which training is least stressful and most engaging for students and if differences exist based on a specific disability with a focus on students with autism spectrum disorder.

What are the goals of the study?

The objective of this study is to assess the stress level and engagement of students subjected to different forms of training.

What will happen during the visit or online?

The subjects will be fitted with a Shimmer Glove on their hand and will wear TobiiPro glasses for eye tracking or an eye tracking bar will be used. Each subject will be asked to submit a salivary sample before each training and directly after each training. They will be asked to complete 3 trainings over 4 visits. The Neurodivergent will attend an acclimation session in which no training is offered.

How will this help families?

This could help them learn which teaching method (in-person, prerecorded video or zoom) is best for their loved one. Which will help them to be stronger advocates.

We are the TRANSCEND Research Team at Massachusetts General Hospital – thank you so much for your interest in our research! Our research is about how different areas in the brain are connected in autism compared to typically developing individuals, and is entirely non-invasive. We are currently recruiting individuals ages 14-32. The study would involve behavioral assessments, and 1-2 sessions in the MEG, a device that reads brainwaves, and is similar to EEG. We will also determine with you whether an MRI is needed. If so, it will be a very short one – about 10-15 minutes. You can read more about our studies on our website: http://transcend.mgh.harvard.edu/ We reimburse for time at the rate of $30/hr for behavioral assessments, and $70/hr for MRI/MEG visits. We also reimburse for travel expenses such as Uber and Lyft costs (up to $80 per visit) and for parking. Note also that our visit times are flexible, and we will do our best to accommodate your schedule.

What are the goals of the study?

Our research group studies brain development and associated medical conditions in healthy adults and adults with developmental disorders such as autism, an autism spectrum disorder, language impairments, attention deficit disorders, or sensory processing disorders, including misophonia. Specifically, we are trying to understand how sensory information (sight, hearing, and touch) is processed in the brain of an individual with autism spectrum or other developmental disorders as compared to a healthy individual.

What will happen during the visit or online?

The study would involve behavioral assessments, and 1-2 sessions in the MEG, a device that reads brainwaves, and is similar to EEG. We will also determine with you whether an MRI is needed. If so, it will be a very short one – about 10-15 minutes. If you self-identify as having misophonia, we will ask you to get a comprehensive audiology exam at the Mass Eye and Ear Audiology clinic affiliated with MGH, to rule out other potential auditory processing disorders.

How will this help families?

There is no direct benefit to the subject for participating in the research. We hope that the information gathered in our studies will aid in the identification, understanding, and treatment of autism.

RAYS, a Brown University research study, is aimed at studying the outcomes and development of autistic teens and young adults aged 12-24 as they navigate adolescence to early adulthood.

What are the goals of the study?

The goal of RAYS is to examine the challenges and problems that adolescents and young adults on the autism spectrum experience over the course of adolescence and young adulthood, especially their exposure to alcohol and other drugs.

What will happen during the visit or online?

Participation involves 4 interviews over 3 years, each one year apart after the initial assessment. The study consists mainly of interviews and filling out questionnaires on mood, behavior, alcohol and other drug use, and relationships with family and friends. Teens/young adults can earn up to $395 for participating over the course of the study and parents/guardians can earn up to $225. All visits can be done remotely or in-person. The length of the visits vary by timepoint. Our baseline assessment generally takes 3-4 hours, T2 takes about one hour, T3 takes about 3 hours and T4 takes about one hour. All assessments can be broken up into multiple sessions if needed or completed in one sitting – we leave it up to the participant. If a participant is over 18 years old, their parent/guardian does not need to participate in order for the young adult to participate. If their parent/guardian would like to join the study at a later point, we will try to accommodate enrolling them. 

How will this help families?

This study can help researchers better understand the experiences of adolescents and young adults on the autism spectrum.

We want to measure brain rhythms in children/teens with and without ASD during overnight sleep at home using wearable sleep headbands.

What are the goals of the study?

We’re hoping to learn more about differences in brain rhythms during sleep. Since lab-based sleep studies are expensive and burdensome, a sleep headband that could accurately and comfortably measure sleep rhythms at home would allow us to study more people over longer periods of time and help us learn more about sleep disruptions in different populations.

What will happen during the visit or online?

We will send a sleep headband to participants and conduct a remote training session to teach participants how to set it up and use it. Participants will then sleep at home with the headband for up to 3 consecutive nights. We will have daily checkins and offer remote technical assistance as needed. Participants will answer some questionnaires and surveys, and return the headband in a pre-paid box at the end of the study.

How will this help families?

Learning more about sleep differences may help us develop treatments for sleep difficulties in the future.

The current study will be conducted by a research team at the University of Maryland College Park, via Zoom and aims to teach peer type family members (PFM) such as siblings or cousins of autistic children/youth to use video prompting to support daily living skills. The primary aim of the study is to examine the PFM fidelity of implementation using a single-case design across 10 child-family member dyads. The secondary aim is to examine the effects of PFM-implemented video prompting on daily living skills of children or youth with autism using a single-case design across the same 10 dyads. The third aim of the study is to descriptively analyze the social validity of the intervention by having the participants complete an anonymous survey (for caregivers) or a Zoom session (for child/youth and the PFM). The findings will provide implications for family-involved learning of daily living skills using virtual coaching in natural settings. This study is important because autistic children and youth have benefited from step-by-step directions to learn daily routines including mealtime, brushing teeth, or doing laundry or dishes. For example, video prompting has been shown to be effective to introduce cooking, academic, functional, and social skills. Previous research shows that peer-type family members (PFM) such as siblings successfully implement interventions to support diverse skills for autistic children/youth. Thus, the use of PFM-implemented video prompting could be beneficial to support the daily living skills of children or youth with autism.

What are the goals of the study?

The study attempts to teach PFMs of autistic children/youth to use video prompting to support daily living skills. The main goal is to examine the PFM fidelity of implementation using a single-case design across 10 child-family member dyads. The secondary aim is to examine the effects of PFM-implemented video prompting on daily living skills of the same children/youth with autism. Finally, the study descriptively analyzes the social validity of the intervention by interviewing the participants.

What will happen during the visit or online?

The study will take place via Zoom for approximately 3 months with 2-3 sessions per week and the following procedure: • 5-minute questionnaire • 5-10 minutes observation of the child engaging in the everyday skills (about 1-2 weeks) • 20-minute training for PFM to use video-based learning (about 2-3 weeks) • 20-minute session for observation of, and feedback for child and PFM (about 3-4 weeks) • 5-minute observation of the child/youth engaging in everyday skills (about 1-3 times) after the training is over • 5-minute survey for caregiver, and 10-minute Zoom session with child/youth and PFM to ask for feedback about the research process

How will this help families?

We hope to better understand how peer type family members such as siblings or cousins could participate in home-based daily living skills learning and practice for autistic individuals using video clips and video prompting. Specifically, we want to understand how family members can receive training via a virtual platform, and implement the intervention to fidelity. Additionally, we want to examine how effective it is for a sibling or a cousin to facilitate video-based learning of daily living skills on the autistic individual’s outcome. Finally, we want to understand how feasible and relevant these training and intervention strategies are for caregivers, autistic individuals, and their peer type family members.

The Vision Lab at Old Dominion University is currently looking for volunteers ages 8 – 20 years old with and without autism for an online IRB-approved research study conducted in collaboration with Eastern Virginia Medical School. Children and young adults with autism may make and view facial expressions differently than children and young adults without autism. Video and eye-tracking can be used to study these differences. Participants interact with the researchers on Zoom and play a video game related to facial expressions while a webcam captures their facial expressions and gaze. By studying the video and eye-tracking data, we hope to identify behavioral markers that can help assess and treat children and young adults with autism.

What are the goals of the study?

The purpose of this study is to learn more about facial expressions and gaze behaviors in children and young adults with and without autism. Imaging, such as video and eye-tracking, can be used to study these differences. By studying the imaging data, we hope to identify behavioral markers that can help assess and treat children and young adults with autism.

What will happen during the visit or online?

Participants take part in two Zoom sessions with the researchers. Each Zoom session will take up to 1 hour, including breaks. In the first session, the participant will complete a brief IQ assessment. In the second session, the participant will play a video game related to facial expressions while their webcam records their reactions. Participants will also be asked to complete two take home measures (identifying emotions based on pictures of people’s eyes and a face memory test) and an optional personality questionnaire (completed by the parent for participants under the age of 18).

How will this help families?

We hope that this research will identify behavioral markers that may facilitate new computer-based tools to improve access to care and intervention at home as well as in the clinic.

This study is examining whether a non-invasive device called vagus nerve stimulator (VNS) improves symptoms related to intellectual and developmental disability (IDD) and/or autism spectrum disorder (ASD). VNS involves applying mild electrical stimulation through the skin around the neck. The vagus nerve sends communications between the brain and many parts of the body. It regulates many cognitive, emotional and bodily functions. VNS is FDA-approved for headaches in people 12-years and older.

What are the goals of the study?

The purpose of the study is to examine whether a device called vagus nerve stimulator (VNS) can help with autonomic symptoms commonly seen in developmental disabilities, including autism.

What will happen during the visit or online?

The participant will undergo several behavioral, neurocognitive, and EEG tests and attend regularly scheduled study appointments. The study duration will be between 9-11 months, which includes 1, 3, 6-month follow-up appointments.

How will this help families?

Possible improvements in some symptoms related to developmental disabilities and ASD with the use of VNS.

We are conducting a study to better understand autistic girls and how/why autism characteristics are masked in high school. If you are the mother of a high school autistic female in inclusion for at least 80% of the school day, we would love to hear the perspectives of both you and your daughter via a virtual interview and questionnaire! Compensation is available for qualified participants. 

What are the goals of the study?

The goal of this study is to investigate high school aged autistic females who try and “mask” their autistic characteristics as they navigate through everyday high-school life.

What will happen during the visit or online?

An online questionnaire and a zoom interview.

How will this help families?

This study will help empower autistic females as the navigate their high school years.

In this study, we will present a series of validated eye tracking paradigms (e.g., images of faces, videos of social interactions) while we monitor eye movements and physiological arousal. Two research assistants will also collect behavioral reports of ASD and ADHD symptoms from 8-12 years old participants. These data will allow us to examine how and if eye movements, arousal, and questionnaire outcomes differ between children with ASD and ADHD. By combining eye tracking/arousal measures and behavioral assessments, we will then draft a map of how these social cognitive traits manifest in eye movements.

What are the goals of the study?

The primary aim of this study is to test the utility of a social cognitive battery incorporating psychophysiological measures to differentiate between autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD).

What will happen during the visit or online?

A brief telephone screening will be conducted to determine if the child and family are interested in the study. Then, a research team member will schedule a time for the family to come into the lab for approximately 90 minutes. Prior to the visit, parents will be asked to send a copy of a recent diagnostic assessment to confirm diagnosis. During the visit, the participant will come to our lab with their parent. Upon completion of the consent and assent, cognitive screener will be conducted first to the child and then the eye tracking tasks will be administered using the Eyelink 1000. We will ask the child to sit in front of a computer screen, and we will be showing the child some videos and images while the computer will track the child’s physiological response and their eye movements. Parent and caregivers will complete a few questionnaires by the time. Upon completion of all measures, the participant will be given a $20 gift card for their time.

How will this help families?

Families will receive a feedback summary compiling information regarding their responses on questionnaires, including the Conners, SRS, and CBCL. Families will learn about their children’s current condition in behavior performances and cognitive development. If requested by contacting the lab via phone or email (or indicating during the study visit), a 15 minute phone feedback session will be scheduled for the parents with the PI, clinical psychologist, to discuss the results from the questionnaires. This will also offer the PI a chance to address any other questions the parents may have. Participants will also be compensated $20 for their time.

Dr. Eggebrecht and researchers at Washington University in St. Louis are mapping brain function in children with autism spectrum disorder with diffuse optical tomography.

What are the goals of the study?

Dr. Eggebrecht and researchers at Washington University in St. Louis aim to investigate brain function underlying development in children who have or are at risk for developing Autism Spectrum Disorder.

What will happen during the visit or online?

Children will complete a 1-hour brain imaging scan and developmental testing at Washington University School of Medicine in St. Louis. Parents will complete online and phone surveys from home. Families will be compensated $25/hour for their participation.

How will this help families?

We hope that, in the future, society may benefit from study results which increase our understanding of typical and altered development of brain function. We hope that in the future, optical imaging will complement the current brain imaging technologies in the management of a variety of patient populations.

This pediatric autism clinical research study is currently testing the drug, pimavanserin, to see if it is safe and effective in treating irritability and other behaviors in children and adolescents with autism spectrum disorder (ASD). Study participation will last for up to 14 weeks, with a 6-week treatment period. Children who enroll in this study will receive either the study drug or placebo. A placebo looks like the study drug but has no impact on the person taking it. There will be no cost for the study drug or any study-related procedures. You may be compensated for your time and travel. If your child completes the 6-week treatment period, they may be able to enroll in a 52-week, open-label extension study if they qualify. During this open-label study, there is no placebo. Children who enroll will receive the study drug, pimavanserin.

What are the goals of the study?

The overall goal of this study is to evaluate whether an investigational drug might help relieve irritable behaviors associated with Pediatric Autism Spectrum Disorder that make social interactions and everyday functioning challenging.

What will happen during the visit or online?

Study participation will last for up to 14 weeks, with a 6-week treatment period. Children who enroll in this study will receive either the study drug or placebo. A placebo looks like the study drug but has no impact on the person taking it. There will be no cost for the study drug or any study-related procedures. You may be compensated for your time and travel.
If your child completes the 6-week treatment period, they may be able to enroll in a 52-week, open-label extension study if they qualify. During this open-label study, there is no placebo. Children who enroll will receive the study drug, pimavanserin.

How will this help families?

The evaluation of this investigational drug may help relieve irritable behaviors associated with Pediatric Autism Spectrum Disorder that make social interactions and everyday functioning challenging.