Generating Effectiveness Mechanisms in RUBI (GEMs in RUBI)

Researchers at Seattle Children’s are looking for parents of 2 to 12 year old children with autism spectrum disorder to take part in an online survey study and an in-person EEG visit. We will use a variety of neuroscience, behavioral, and self-report techniques to first understand if there are unique emotional or behavioral considerations for families of children with neurodevelopmental disorders and challenging behaviors and if these characteristics influence participation in and completion of interventions.

What are the goals of the study?

This study is being done to learn more about parents’ emotion processes and problem-solving in families of children with neurodevelopmental disorders and behavior problems. For families who participate in this study, parents will complete several questionnaires and one lab-based visit to measure brainwaves with an EEG while completing some problem-solving or other tasks.

What will happen during the visit or online?

Parents will complete about 1 hour total of questionnaires (about themselves and their children) and 1.5 hours of an in-person visit. During the in-person visit, parents will complete 15 minutes of problem-solving activities and 1 hour of EEG (i.e., measurement of brainwaves while playing games).

How will this help families?

Findings will help us support families enrolled in interventions targeting challenging behaviors.

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.

Stanford University is recruiting children with autism spectrum disorder (ASD) for a research study looking at the parts of the brain that may underlie some restricted and repetitive behaviors (RRB) in children with ASD using N-acetylcysteine (NAC), an over-the-counter dietary supplement. We will use MRI and EEG to determine what changes in the brain may be related to change in RRB severity.

What are the goals of the study?

We hope to learn the mechanisms in the brain through which NAC may be able to alter the severity of RRB in children with ASD and examine whether it might be able to reduce the severity of some of RRB symptoms. We also hope to determine how NAC is able to affect RRB symptoms in children with ASD and what changes in the brain may be related to change in RRB severity.

What will happen during the visit or online?

complete cognitive and behavioral assessments (such as IQ testing)
attempt an MRI and EEG scan
drink N-acetyl cysteine dissolved in water for a total of 12-week period

How will this help families?

Potential benefits include monitored access to utilize NAC, which cannot necessarily be considered treatment for any specific condition in children with ASD at this time. It is also likely that the knowledge gained from this study may generally contribute to better treatment options for children with ASD more broadly.

We suspect that some minimally verbal autistic children also have a motor speech disorder called “childhood apraxia of speech” or CAS. If this is so, does CAS treatment, appropriately modified for minimally verbal autistic children, improve their speech? Instead of being primarily drill-based, therapy will be embedded in a social, play-based context to provide ecologically valid feedback and help children generalize their skills as much as possible. We’re looking for up to 20 children with ASD and CAS, between the ages of 5 and 18, to participate.

What are the goals of the study?

This study therefore aims to test whether treatment for CAS, modified to be embedded in a social, play-based context, improves speech production for children with minimally verbal ASD and CAS.

What will happen during the visit or online?

Prospective participants will be assessed in our lab in Charlestown with a variety of measures that document their speech, language, social, and nonverbal IQ skills. During the speech tasks only (estimated to last approximately 30 minutes), children will wear reflective markers, 2-3 millimeters in size, on their faces. Our multiple camera system will track the movements of these markers as children attempt to repeat a series of syllables and simple words. Baseline assessments are conservatively estimated to last approximately 4 hours, scheduled as two 2-hour visits. All assessments will be audio- and videotaped for later analysis.

How will this help families?

Research shows that improved communication abilities are associated with fewer challenging behaviors and better long-term outcomes for children with ASD. Therefore, creating valid and effective treatments to improve their oral communication is extremely important.

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.

Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by deficits in social communication and social interaction and restricted, repetitive patterns of behavior. Given the lack of specific pharmacological therapy for ASD and the clinical heterogeneity of the disorder, researchers at The Johnson Center and the University of Texas Southwestern are undertaking an ASD biomarker study with the goal of identifying biomarkers for determining ASD risk and developing potential therapeutic interventions.

This study may help with identifying ASD risk in very young children so that interventions and therapies can begin as early as possible – this is critical for ensuring the best developmental outcome. We will use machine learning (AI) to identify therapeutic targets that may help with addressing ASD-specific behaviors.

What are the goals of the study?

The purpose of this study is to identify biomarkers of ASD that correlate with behavioral and developmental phenotypes in order to:
1) develop and test biomarker profiles that form a diagnostics tool;
2) screen and identify children with ASD who might benefit from specific interventions; and 3) develop and test biomarker profiles that inform an instrument for monitoring therapeutic response to medical interventions; and improve the clinical well-being of affected children and increase our knowledge base of this disorder.

What will happen during the visit or online?

Your participation will require two parts:

i) Completion of 4 online questionnaires that can be done from home.

ii) Visiting a Lab Service Center, such as Quest, Lab Corp or CPL, near your home for your child to give a small blood sample.

Compensation of $125 is provided upon completion of the study.

How will this help families?

The biomarkers we identify may assist in the development of therapeutic interventions for targeted treatments for autism.

We are a team of researchers located at the MGH Institute of Health Professions (MGH IHP) in Boston, MA. We are completing a study about speech therapy treatment for children with the motor speech disorder childhood apraxia of speech and autism. Instead of being primarily drill-based, therapy will be embedded in a social, play-based context to provide ecologically valid feedback and help children generalize their skills as much as possible.

What are the goals of the study?

The main aim of this study is to test whether treatment for the motor speech disorder childhood apraxia of speech, appropriately modified for minimally verbal autistic children, does in fact improve speech production in minimally verbal children with both conditions.

What will happen during the visit or online?

Prospective participants will be assessed in our lab in Charlestown with a variety of measures that document their speech, language, social, and nonverbal IQ skills. During the speech tasks only (estimated to last approximately 30 minutes), children will wear reflective markers, 2-3 millimeters in size, on their faces. Our multiple camera system will track the movements of these markers as children attempt to repeat a series of syllables and simple words. Baseline assessments are conservatively estimated to last approximately 4 hours, scheduled as two 2-hour visits. All assessments will be audio- and videotaped for later analysis.

During the baseline visits, children’s parents will also be asked to complete a series of questionnaires that document demographics, developmental history, and current levels of community functioning.

After analysis of baseline data (documenting that participants meet criteria for ASD, minimally verbal status, and CAS), children who meet inclusion criteria will be invited to receive treatment. A set of 6 one- or two-syllable words will be selected for each child, identified from their baseline tests to specifically involve the speech movements that are found to be disordered in their speech (i.e., stimuli will consist of words that the child can attempt to say but which are not pronounced perfectly).

Treatment will consist of 15 hour-long sessions over 3 weeks and may take place in our lab or at a child’s home or school, and will be video- and audio-recorded for later analysis.

During treatment sessions, children will practice each target multiple times, divided into separate practice blocks and interspersed with practice on the other targets. A “scaffolding” hierarchy will be employed to help children learn the correct speech movements for each target. Specific scaffolding activities that the therapist will provide include (1) producing the target slowly, (2) producing it in unison with the therapist, (3) gradually fading out this assistance as the child learns to produce the targets correctly on their own, and (4) providing tactile or visual cues to help children remember the correct oral movements for each target.

Practice will occur in a naturalistic, developmentally-informed framework, which involves embedding speech tasks within social interactions organized around play or social activities that are matched to the child’s developmental level and that incorporate the child’s target words. For example, if a child has difficulty saying the consonant /k/, the word “cookie” might be selected as a target. This word could be practiced during an activity where therapist and child pretend to feed a stuffed animal cookies or where they actually decorate and eat cookies as a snack. The aim is for children to learn correct speech production at the same time that they engage in positive and rewarding social interactions that promote skill generalization, rather than for them to simply respond to therapist prompts.

After treatment is completed, children will be invited back to the lab to have their speech production analyzed, using the same procedures as at baseline. They may also re-enroll to receive an additional series of 15 treatment sessions if desired.

For their time, participants will receive $50 for completion of the baseline testing and $100 upon completion of the post-treatment testing. Parking compensation will be provided for each visit to our Charlestown lab location.

How will this help families?

In our research, we are interested in understanding why many children with autism don’t learn to talk on their own. Our ultimate goal is to improve communication outcomes for children at risk for being minimally verbal. In this study, participants will be contributing to the advancement and development of evidence-based speech treatment approaches for children with autism and childhood apraxia of speech.

Six-to-ten year old children with autism spectrum disorders are invited to participate in a fun study, which involves wearing an actigraphy watch for two weeks (to estimate the quality and other characteristics of the child’s sleep) and participation in one MRI session at SDSU Imaging Center. Both children and parents are asked to keep sleep diaries for the two weeks when the child is wearing the actigraphy watch. Finally, children are asked to take part in a brief cognitive testing session. The study aims to understand the links between sleep (problems) and brain development in children with autism.

What are the goals of the study?

This study aims to understand potential mechanisms underlying sleep disturbances in autism.

What will happen during the visit or online?

Children will be asked to wear an actigraphy watch for two weeks, keep sleep diaries, take part in one MRI scan, and complete a brief behavioral assessment session.

How will this help families?

Sleep problems affect 50-80% of individuals with autism and can have cascading effects on development, everyday function, and quality of life. However, the mechanisms underlying sleep disturbances in ASD are not understood. A better insight into the potential mechanisms of sleep disturbances in autism may ultimately help with developing new treatments targeting sleep in children with autism.

Researchers at the Ohio State University are currently looking for children and caregivers to participate in a study examining child report of depressive symptoms, anxiety symptoms and social support. If your child is between the ages of 10 and 17 years and has a diagnosis of autism spectrum disorder, you may be eligible to participate in this study. This study aims to examine self-report measures of internalizing symptoms and social support to improving screening and intervention outcome measures.

What are the goals of the study?

The primary objective is to examine psychometric properties of measures of anxiety, depression and social support in youth with ASD age 10-17. The secondary aim is to examine the relationship between peer, parental, and teacher social support and internalizing disorders in ASD.

What will happen during the visit or online?

The child participant and an accompanying parent will participate in two zoom visits. The duration of the first visit would be about 1 hour. The second visit would occur two weeks after the first and would be about 30 minutes long. The visits would consist of interview and survey questions. Participants would be emailed a $10 Amazon gift card after completion of the first visit, and a $20 gift card after completion of the second.

How will this help families?

Having validated self-report measures on internalizing symptoms and social support in ASD will help us better screen for youth that may need intervention, as well as measure how effective interventions are. As youth with ASD often have a fewer number of friendships, understanding how social support from different people (parents, teachers, friends) relate to mental health symptoms will help inform target areas of intervention.

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.