Shape in Healthcare Study

The purpose of this study is to understand the healthcare experiences of both non-autistic and autistic adults as well as their related needs. Participants that support adult family members at healthcare appointments will have the option to answer additional questions.

What are the goals of the study?

To improve education to reduce healthcare disparity and to offer guidance on universal design as well as accessibility.

What will happen during the visit or online?

Take an online survey

How will this help families?

Improve education for healthcare professionals and office workers

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.

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.

Through a better understanding of motor learning, we can begin to craft early interventions to fit the needs of our participants. Our study aims to focus on how infants at elevated risk for autism learn motor skills for the purposes of developing early interventions. We accomplish this through non-invasive measures using play based assessments and a motor learning task.

What are the goals of the study?

The current project for the infant robot interaction study aims to better understand how infants at elevated and community risk for autism learn motor skills. We are specifically interested in how infants integrate their vision and movements to learn that their behaviors are controlling our robot. We ultimately want to understand infant motor learning so that we can better tailor early motor interventions.

What will happen during the visit or online?

Participants will come to Children’s Hospital Los Angeles for a single hour visit. We will place 4 movement sensors on your child’s arms and legs, and a head mounted eye tracker on their head. With these devices on, we will record a video of your child observing our robot talk and move. At the end of the visit, we will measure your infant’s weight, length, and motor milestones. You will also go home with a short survey that asks you about your child’s everyday behaviors.

How will this help families?

No direct benefits will be given to the participants of our study. However, our goal is to better understand how infants at elevated risk for autism learn motor skills so that we can better develop early interventions for this population. Through early intervention, infants can have the best start to life by working on the needs of the patient.

What are the goals of the study?

We are currently working on a project that aims to better understand how autistic people are influenced by sensory information (sights, sounds, etc.) while walking. In our current study, we are asking people to walk on a mat while they wear a virtual reality headset where they look at a sidewalk that is empty or a sidewalk that is in a busy area (pedestrians, billboards, etc.). While wearing the headset they will also hear sounds that correspond to these sidewalk situations (either silence or the types of noises you would expect if you were walking down a busy sidewalk). While they are walking, we record the pressure their feet exert on the mat and we compare these pressure patterns across the different conditions (busy and empty sidewalk, loud and quiet noise), to study whether different amounts of sensory information influence walking patterns.

What will happen during the visit or online?

Participants will be asked to fill out questionnaires, solve puzzles, and walk on a sensored mat while wearing virtual reality goggles.

How will this help families?

The study will help us to inform the development of environments that are more accessible for people with autism.

Social interaction during early childhood is a critical component of development. This project explores these interactions during play among children with and without autism spectrum disorder to better understand how children learn to engage with their environment and the people around them. The results of this project may lend itself to improving early screening, diagnosis, and intervention processes for young children with autism spectrum disorder and their families.

What are the goals of the study?

The goal of this project is to explore the early visual experiences of children during social play with their parents and how these interactions may influence different aspects of their development, such as language and cognition.

What will happen during the visit or online?

You and your child will be asked to play with a set of toys for approximately 5 minutes while wearing head-mounted eye-trackers. Depending on your child’s age, your child will also be asked to complete: the ADOS-2 (a gold-standard autism diagnostic test; 12mo and older), an IQ test (12mo and older), a motor assessment (18mo or younger), and/or two vocabulary tests (30mo or older).

How will this help families?

Families will receive a free summary of their child’s assessment results (autism diagnosis, vocabulary, motor skills, and/or Q) along with an Amazon gift card, family passes to the Children’s Museum of Houston, and a gift-bundle (toys, books, crayons, T-shirt, etc). We hope this project will ultimately assist in improving early screening, diagnosis, and intervention processes for infants and toddlers that may have autism spectrum disorder.

Through this study, the SENSE Lab hopes to learn more about the unique and challenging process of puberty in females with ASD and provide information to families and caretakers in order to make the transition from childhood to adulthood easier. This study aims to understand and track puberty in females with and without ASD so clinicians are able to provide meaningful approaches and interventions in the future during this critical time period.

What are the goals of the study?

The mission of the SENSE (Social Emotional NeuroScience Endocrinology) Lab is to better understand the social and emotional functioning of youth autism and to translate findings into meaningful approaches and interventions. Significant physical, psychological, hormonal and social changes occur during pubertal development. Adolescence may be uniquely challenging for girls especially those with autism spectrum disorder (ASD). The goal of our study of girls with autism or typical development is to promote, understand, build, enrich, respect, and track youth.

What will happen during the visit or online?

Participants will come to Vanderbilt University Medical Center once a year for four years. Each visit includes a physical exam, blood draw, brief psychological exam, brief social interaction, and EEG. Participants will be expected to take saliva samples at home prior to study visits and complete menstrual tracking surveys.

How will this help families?

This study will help provide vital information regarding puberty in females with ASD and help families further understand the unique timing and tempo of puberty in autistic females. In addition to study compensation, families will receive annual research letters of standardized measure results and an annual symposia on topics related to pubertal development and ASD will be provided for families. We aim to be available to families for questions and concerns relevant to the focus of the study; namely, adolescence, puberty, and mental health. If developmental needs arise, our multidisciplinary team will do our best to provide support.

This program supports data collection and sharing that will expand and improve medical research. By generating the most comprehensive Data Collection Program for these conditions, we can increase research and accelerate the development of new drugs, devices, or other therapies. Participating families will also have the ability to connect with other patient organizations, be contacted to participate in emerging clinical trials (if eligible), and manage how their data is used.

What are the goals of the study?

The RARE-X Data Collection Program makes data collection free, accessible and easy for communities, while ensuring the data collected is as useful and shareable as possible for researchers and others working on treatments. Our goal is to enable families to easily collect and access their data and empower them to become data stewards and sharers. This program helps create a robust data set that can be shared to accelerate diagnosis, disorder understanding, and drug and therapy development.

What will happen during the visit or online?

Participants will be asked to create a secure, password-protected account and provide their consent to participate. Participants will then have the chance to answer a set of questions (survey) regarding the patient’s health history, development, and treatment and care. Additional surveys will be added over time and participants will be notified of future surveys relevant to them. Participants will also have the opportunity to upload genetic test results related to the disorder diagnosis.

How will this help families?

Participation in this program may…

  • Contribute to further research leading to the development of treatments
  • Provide patients the opportunity to participate in clinical trials
  • Help you learn more about the disorder, leading to better advocacy in medical, education, and social services
  • Inform patients/families about the progression of the disorder and how they may compare with other patients

What are the goals of the study?

The goal of this research study is to develop an online questionnaire about what youth with Autism Spectrum Disorder (ASD) eat and how it impacts their daily lives.

What will happen during the visit or online?

Youth (7-16 years) and their parent will complete a questionnaire about food and eating habits online. Parents will complete an additional child background and medical history questionnaire online. Participants will be paid for their time with an Amazon online gift card.

How will this help families?

There is a very limited number of reliable tools that can be used to assess quality of life in autistic people. This issue limits our ability to accurately assess and track client needs, review progress, set priorities, and evaluate service appropriateness and effectiveness. To address this problem, researchers at CAR work on developing surveys and measures for autistic individuals of different ages.

You will be paid for your time and travel expenses. You will also be given a report and receive personalized feedback on your child at your child’s two-year visit. If your infant develops autism, we will assist you in finding services in your community. There is no cost to participate in the study and no insurance needed.

What are the goals of the study?

The goal of this study is to track the early development of infants with an older sibling, so we can better understand how autism develops.

What will happen during the visit or online?

You and your child will make 2-4 visits to CHOP’s Robert’s Center for Pediatric Research. We will observe as you and your child play with various toys, puzzles, and interactive items such as bubbles and balloons. Caregivers will answer questions about their children’s development and past medical history. Using these observations and questionnaires, we will assess your child’s language, motor, and social development after your child starts to walk and again when he/she turns two. We will also provide an expert autism evaluation when your child turns two years old.

How will this help families?

Through measuring facial expression, movement, and infant-caregiver synchrony in very young children as a novel tool, we are working on earlier autism detection and developmental characterization.

We are one site as part of a nationwide study, the Infant Brain Imaging Study (IBIS). Our team develops and implements advanced neuroimaging methods and tools to study the structural and functional features of the brain, to better understand the neurobiology of autism.

What are the goals of the study?

This study seeks to understand the key differences and similarities in brain development between infants whose siblings do and do not have autism.

What will happen during the visit or online?

Participants will be asked to make 3 visits to CHOP over time to complete cognitive and behavioral testing and a non-invasive MRI. Participants will be compensated for their time and receive a written feedback report.

How will this help families?

We study brain structure and function that are thought to support skills and behaviors related to autism, including social communication, repetitive behaviors, and co-occurring conditions of anxiety, ADHD and language impairment.

What are the goals of the study?

The goal is to learn how the environment affects children’s health and development, and how it interacts with genetic information. The environment includes things that children may experience throughout their lives or even before they are born, like the air they breathe, foods they eat, interactions with other people and the neighborhoods where they live. Children ages 5-11 and a biological parent are invited to participate.

What will happen during the visit or online?

The study involves one visit, with in-person and remote components, in which the child will complete a cognitive assessment and body measurements, and both the child and parent will complete questionnaires and provide bio-samples (saliva, blood, hair and toenails).

How will this help families?

ECHO is a nationwide research program whose mission is to improve the health of children for generations to come.