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.

Researchers in the Vanderbilt University Medical Center department of hearing and speech sciences are running a study to better understand why some autistic people are more sensitive to everyday sounds than others and how this relates to the way the brain processes sound.

What are the goals of the study?

Although they are not frequently diagnosed, sound sensitivity disorders, including hyperacusis, misophonia, and phonophobia, are extremely common in the autistic population. The purpose of the current research study is to compare and contrast people with and without these different sound sensitivity syndromes in terms of their clinical symptoms, hearing, brain function, and mental health. By examining a group of adults with ALL levels and types of sound sensitivity (including no sound sensitivity at all), we hope to answer fundamental questions about the nature of sound sensitivity and improve the ways in which clinicians diagnose and assess patients with this common complaint.

What will happen during the visit or online?

Study participants will be asked to complete some online questionnaires and come to Vanderbilt for up to two in-person sessions. The first in-person session includes psychoacoustic (hearing) tests, interviews, and standardized psychological assessments. After that session, you may qualify for a second session that will include more hearing tests, brainwave recordings (EEG), and other measures of auditory function. There are no anticipated risks to you, and you may not benefit directly from your participation in this study, though you will have the opportunity to request a report of your study results. Following a screening questionnaire (approximately 10–15 minutes), there are two visits to the laboratory (each lasting approximately 3-5 hours) and two groups of online questionnaires (approximately 20–40 minutes each).

How will this help families?

Currently, research on autism and sound sensitivity has been limited to primarily descriptive studies of prevalence, and there is very little understanding of underlying mechanisms, let alone any evidence-based diagnostic or treatment strategies. This work will be foundational in advancing our knowledge of this problem and its underlying causes in the autistic population, which can hopefully lead the way toward better clinical care for autistic people who experience sound sensitivity in their everyday lives.

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 GEMMA (Genome, Environment, Microbiome, and Metabolome in Autism) project aims to understand the many factors that contribute to the development of autism in children who have an autistic sibling.

What are the goals of the study?

The GEMMA project aims to understand how genes, the environment, gut bacteria, and the digestion of food may relate to the development of autism.

What will happen during the visit or online?

  1. Online surveys about food, health, and behavior,
  2. Behavioral assessments (on Zoom) every 6 months from ages 1 to 3,
  3. Periodic saliva, urine, stool, and blood samples (done at home/locally) until age 3,
  4. One time samples from one or both biological parents and from the sibling with ASD

How will this help families?

Your family will be contributing to research that aims to help improve the early diagnosis of autism, as well as understand the GI symptoms associated with autism. All infant participants will receive early developmental assessments from study psychologists.

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.

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.

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.

Researchers in Baltimore, MD at Johns Hopkins University and Kennedy Krieger Institute are interested in investigating the underlying neural mechanisms associated with perceiving social interactions. We are recruiting adults (ages 18-35 years) with and without autism. Participation in this study includes a 90–120-minute MRI scan, a 10-minute recall task, a 30-minute IQ assessment, and six questionnaires. Participants with autism will also be asked to complete a 1-hour interview. Participants will be compensated with a $60 VISA gift card at the end of their research appointment.

What are the goals of the study?

The purpose of this study is to investigate the feeding difficulties of infants who are later diagnosed with autism compared to their neurotypical sibling to identify any feeding characteristics that would warrant increased monitoring for autism in infancy.

What will happen during the visit or online?

Completion of a 90-120-minute MRI scan, brief questionnaires, 10-minute recall task and 30-minute IQ assessment

How will this help families?

We are investigating the neural mechanisms underlying perceptions of social interactions which will enable researchers to develop better informed therapies and trainings focused on social skills acquisition

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This research study aims to find out more about adults with autism spectrum disorder, including how adults with autism think, how their brains work, and how these things change as they get older.

What are the goals of the study?

The main goal of the study is to understand the aging process in people with autism.

What will happen during the visit or online?

The study involves autism diagnostic evaluation at the SDSU Center for Autism, and a neuropsychological battery testing the individual’s memory, attention span, and other cognitive skills. Participants are also asked to undergo an MRI scan at the SDSU Imaging Center, which allows us to collect information about the brain anatomy and function. Because we are aiming to understand how people with autism age, we hope to repeat this evaluation in about 3-5 years, inviting participants to return for another scan and a set of assessments.

How will this help families?

Participants in this study report that they learn important information about their memory and other cognitive abilities from participating in the study. Broadly, the results of this study should help us understand how people with autism age – something that has not been studied nor well understood thus far.

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.

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.