RISE New
In this study, we are interested in understanding how infants learn about their world from their response to child-friendly videos they can watch at home. For example, we know from studies in the lab that many babies enjoy looking at social stimuli and are able to remember faces they have seen before. In this study, we are testing to see what we can learn about your babies cognitive development at home. This work may help us identify children with developmental delays in the future. To participate, you and your baby will watch a series of videos on your home computer. We will also ask you to answer questions about your child’s development.
What are the goals of the study?
We want to understand how babies look at and learn from the patterns in the world around them. This is part of a larger study we are running to understand how typically developing babies might learn about their world in different ways than babies with developmental delays.
What will happen during the visit or online?
In this study, your baby will see a series of videos while we record how they respond. These videos include children playing, geometric figures, objects, and patterns. After the videos, we will ask you to complete some surveys within the LookIt platform, and some will be sent to you later. These surveys are common in infant research and cover many different areas of development. You can follow the links below to learn more about each survey. Communication and Symbolic Behavior Scales (CSBS) Infant-Toddler Checklist measures the social communication, expression of speech and language, and symbolic abilities of children ages 6 months to 2 years. MacArthur-Bates Communicative Development Inventories measures communication and language development in babies and toddlers from 8 to 37 months (about 3 years) of age. Motor-Libertus Early Motor Questionnaire (EMQ) measures the development of early motor skills (such as raising and holding their own head, rolling over, and crawling) in infants and toddlers. Vinland and Adaptive Behavior Scale (VABS) measures communication and social relationships in infants and toddlers to understand home and family-life behaviors. Modified Checklist for Autism in Toddlers (M-CHAT) (only at completed for 18-month-old children) screens for signs of autism spectrum disorder in toddlers.
How will this help families?
This work may help us identify children with developmental delays 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?
- Online surveys about food, health, and behavior,
- Behavioral assessments (on Zoom) every 6 months from ages 1 to 3,
- Periodic saliva, urine, stool, and blood samples (done at home/locally) until age 3,
- 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.
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.
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 being conducted by Dr. Lee Mason and Alexis Bolds of Cook Children’s Health Care System and Texas Christian University’s Burnett School of Medicine in Fort Worth, Texas. Our research is designed to assess your child’s language development over the course of two years. Every six months we will ask you and your child to take part in a telehealth-based functional language assessment that will last approximately one hour. At the completion of this project, we will compare the different language profiles of all participants.
What are the goals of the study?
We are asking you to take part in this research because your child’s language skills are still developing, and we are trying to learn more about how functional language develops over time. The purpose of this research is to determine whether we can accurately conduct language assessments via telehealth, and to better understand the differences in language development between children with and without autism spectrum disorder.
What will happen during the visit or online?
A language assessment called a “verbal operant experimental (VOX) analysis” will be conducted every six months as part of this research. The VOX is a functional analysis of language that has been carefully designed to assess four language domains: conversing, labeling, echoing, and requesting. Across each of these conditions, we will assess your child’s ability to say the same words. Caregivers will also be asked to complete a brief demographic survey at the time of each assessment to identify potential factors that may be related to language development. We expect each assessment to take approximately 45-60 minutes of your time.
How will this help families?
After each VOX analysis, you will receive an assessment report that describes strengths and weaknesses of your functional language skills. The report provides recommendations for helping to remediate any deficit areas identified by the assessment.
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.
The genetic changes we study in TIGER3 have been connected with autism and developmental disabilities, but we are just beginning to learn how those changes might affect each person and family differently, and what effects might be shared versus unique across those genetic variants. By learning more about the shared and unique effects of these rare variants, we aim to contribute to (1) better understanding of co-occurring medical and behavioral conditions, and (2) development of individualized supports for affected individuals and their families.
What are the goals of the study?
In the TIGER research study, we are learning more about individuals with genetic events associated with autism spectrum disorder (ASD), intellectual disability (ID), and/or developmental delay (DD). We hope to better understand and describe how different gene changes influence the development, behavior, and experiences of children and adults. Individuals with these genetic changes may have neurodevelopmental differences that we would like to better understand.
What will happen during the visit or online?
Eligible families participate in a consent phone call, and are then invited to complete a series of video- or phone calls to assess for autism-associated features, adaptive skills, cognitive skills, and medical history. Caregivers are also invited to complete a variety of online questionnaires, including measures of adaptive behavior, treatment history, sleep habits, gastrointestinal symptoms, social-emotional functioning, and executive function. Biospecimen (blood or saliva) collection is completed remotely. Finally, families are offered a feedback session with a clinician and a written report of standardized measures and recommendations.
How will this help families?
Families will be compensated $100 for their participation. Participants may receive feedback about their family’s genetic event(s). Families will also receive written and/or verbal feedback regarding adaptive behavior, social communication skills, language skills, and cognitive skills as available from completed study activities.
Autistic children frequently engage in repetitive and inflexible behaviors, and sometimes these behaviors can significantly interfere with child learning, are associated with long-term functional impairment, and co-occurring psychiatric conditions (e.g., anxiety). However, there is a significant gap in effective interventions that address repetitive and inflexible behaviors. The FITBI Study partners caregivers of autistic children with trained therapists to provide coaching for inflexible or repetitive behaviors that are interfering with parent or child quality of life.
What are the goals of the study?
Researchers at the University of Kansas are currently recruiting for a study that provides parent coaching to address the repetitive or inflexible behaviors of autistic children between the ages of 3 to 9 years old. The Family-Implemented Treatment for Behavioral Inflexibility (FITBI) project partners eligible participants with a trained coach to receive individualized support via telehealth.
What will happen during the visit or online?
If you and your child qualify to participate, you will be partnered with a trained coach to receive free, individualized support. Here are a few important details about the research study:
• The study will primarily take place via a secure telehealth video meeting system. Depending on family proximity, there could be home visits to collect data.
• Caregiver participation includes attending weekly telehealth sessions with a trained coach and completing online surveys and brief interviews about yourself and your child.
• Participants can receive up to $120 in compensation for participating.
• Eligible participants will be randomly assigned to one of two groups.
• Participants will be recruited from the states of Kansas and Missouri.
How will this help families?
The overall goal of the FITBI Study is to determine whether a new form of family-based intervention for repetitive and inflexible behaviors, delivered using videoconferencing technology, can counter any negative effects of those behaviors and improve positive outcomes for young autistic children. Results from this study could have substantial implications for remotely delivered interventions that address the repetitive and inflexible behaviors of autistic children.
Diagnosing ASD is challenging, and in most cases, a variety of subtle signs, unique to each child, build up starting in the 1st year (e.g., social, language, motor, attention skills). Motor skills, an understudied area, is also one of the earliest skills affected; although we are aware that early intervention is associated with the best outcomes, the median age of diagnosis remains 4 years. If we could detect signs of ASD earlier and more reliably, we could identify children who would benefit from behavioral therapies faster.
What are the goals of the study?
Our goal is to validate wearable-sensor methodology (wrist-worn accelerometers) for quantifying two endophenotypes: hyperactivity (HYP, an early marker of liability to Attention Deficit Hyperactivity Disorder, which is strongly comorbid with autism) and impairment in motor coordination (MOT). We expect to gain a comprehensive understanding of motor endophenotypes in infants and children as a launching point for future screening and early intervention studies in children at a high-risk for autism.
What will happen during the visit or online?
You and your child will visit Washington University up to two times when they are 18-39 months of age. Prior to visiting, parents will complete online questionnaires about family history and your child’s development. Families are compensated for their time. In-person activities include the children participating in tasks testing gross and fine motor skills. Following the in-person motor and social assessments, the child will be given an accelerometry wristband to wear at home for 48 hours, and a parent will need to record notes of their motor activity.
How will this help families?
If we could detect signs of ASD related to motor skills earlier and more reliably, we could identify children who would benefit from behavioral therapies faster. Earlier access to behavioral therapies for children diagnosed with autism can lead to faster improvements and better outcomes for their behavior.