Characterizing Electroencephalogram (EEG) Index of Plasticity of the Social Brain in Autism Spectrum Disorder

By learning more about how the ASD brain in children, we can help establish ways to identify and intervene in ASD early. If ASD is identified at young ages, resources such as social supports can bolster long-term adaptive functioning in children with ASD. Also, increased understanding about the mechanisms that underlie atypical social functioning in ASD will allow science to develop targeted, effective assistance for these youth as early as possible.

What are the goals of the study?

This project aims to further understand what makes the brains of children with autism spectrum disorder (ASD) unique. Specifically, this study is interested in helping us understand how neural processes in the developing ASD brain contribute to atypical social functioning. A promising new method of assessing brain activity called “phase-amplitude coupling” will be measured via non-invasive electroencephalogram (EEG) technology.

What will happen during the visit or online?

Both children who do and do not have ASD will be invited to participate in an EEG, play computer games during the EEG, and fill out self-report questionnaires with the help of a trained researcher. Parents of participating children will also fill out related surveys. This study is comprised of two visits spaced out over several months.

How will this help families?

Increased understanding about the mechanisms that underlie atypical social functioning in ASD will allow science to develop targeted, effective assistance for these youth as early as possible.

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.

While there have been large-scale genetic analyses of autism spectrum disorder, there have been little efforts to investigate this in Hispanics and Latina/Latino populations (henceforth Latinx), the largest minority population in the United States. Inclusion of under-represented populations in genetic studies is important both for scientific reasons and for equity. The genetic architecture of ASD is complex and ongoing efforts to decipher it have focused on both common and rare genetic variants and investigating whether the genetic architecture differs across ancestral populations is important in order to have informed care and risk factors for underrepresented groups.

What are the goals of the study?

The central purpose of this project is to collect genetic and phenotypic information about childhood psychiatric conditions, with the aim of finding links between core symptoms, cognitive ability, and underlying neurobiological mechanisms. To better understand and investigate the genetic risk for autism spectrum disorder (ASD) in people through observation of its genetic architecture across ancestral populations. Specifically, we aim to further our understanding of ASD in Hispanic/Latinx populations, the largest minority population in the U.S. and an admixed population.

What will happen during the visit or online?

Participating in the study typically requires two in-person visits, one for an autism evaluation and one for IQ testing and DNA Collection. The DNA Collection can either be a blood draw or saliva collection; we collect DNA from the person affected with ASD and two biological family members. Furthermore, there is a zoom interview between a clinician and parent for our children participants and online forms that must be filled out. Families will be compensated $100 and will receive a report of the assessments completed.

How will this help families?

Families will be able to receive a report of all assessments done and receive compensation. Receiving an appointment for an autism evaluation and updated reports can often take several months to years, while here it takes a couple of weeks. Our reports can be often used for school or to apply to additional services. Adding on, our coordinator speaks Spanish which can often aid families that don’t speak English and helps remove that barrier to care. Furthermore, this will help families in the future by investigating risk factors in the development of ASD which can help inform clinical care for diverse populations.

The Autism Biomarkers Consortium for Clinical Trials (ABC-CT) is a multicenter research study led by Yale that also includes Duke University, Boston Children’s Hospital, Children’s Hospital of Los Angeles , and the University of Washington/Seattle Children’s Research Institute. The aim of the consortium is to develop reliable and objective measurements of social function and communication in children on the autism spectrum.

What are the goals of the study?

The aim of the consortium is to develop reliable and objective measurements of social function and communication in children on the autism spectrum.

What will happen during the visit or online?

Caregivers will complete a screening phone call and questionnaires about their child. Children will complete in-person study visits at Boston Children’s Hospital over a 6 month period. Scheduling is flexible including weekends.

How will this help families?

Currently, ASD is diagnosed and treated based on information gathered from clinical assessments and parent questionnaires. ABC-CT will add to this pool of knowledge by developing a more objective battery of tools to measure social function.

Autism is often not diagnosed until after 24 months of age, yet through our IBIS research, we’ve identified early changes in brain development occurring between 6 and 12 months. By further expanding our research in early brain development, we hope to identify methods for earlier identification and more individualized treatment.

What are the goals of the study?

Our goal is to understand early brain development in autism, which we hope will lead to earlier identification and more individualized supports.

What will happen during the visit or online?

Families travel to one of 5 sites for visits at 6, 12 and 24 months. Visits last approximately two days and include un-sedated MRIs during natural sleep along with various developmental assessments. Participants receive around $450 per visit along with reimbursement for travel expenses. This study is being conducted nationally across 5 sites in Seattle, Minneapolis, Chapel Hill (NC), Philadelphia, and St. Louis

How will this help families?

We hope to identify methods for earlier identification of autism and more individualized interventions.

While siblings of individuals with ASD are at greater risk for ASD and other developmental disorders themselves, very little is known about how autism affects the children of these siblings (the “next generation”). This project is aimed at laying the groundwork to better understand how autism affects the next generation. This study will focus on establishing the infrastructure to examine the next generation of families affected by ASD by engaging adult siblings and their spouses/partners in focus groups; this feasibility study will pave the way for a phenotyping study of the next generation to examine the early signs and symptoms among the second-degree nieces and nephews of individuals with ASD.

What are the goals of the study?

To gather input on how having a sibling with ASD affects your family planning decisions and your perspective on participating in research.

What will happen during the visit or online?

If eligible, you will be invited to participate in a 2-hour focus group via Zoom alongside other siblings (and spouses/partners of siblings) of individuals with ASD to provide insight into your experiences, your current feelings surrounding family planning decisions, and your willingness to participate in future research. You will be compensated for your time and input.

How will this help families?

Participation in this study will help to establish a research protocol that can assist other siblings of individuals with ASD. Participation will also assist researchers in knowing what topics need to be addressed through future research and/or clinical projects to help support the needs of unaffected siblings as well as the needs of their affected siblings.

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

The information we receive from healthy, typically developing children, teens, and adults could help us learn more information about the characteristics associated with 3q29 syndromes. The information we learn from our control group comparison utilizing MRI scans will help us gain insight into how the brain processes social information to 3q29 syndromes that are associated with increased risk for several developmental disabilities. As a token of our appreciation, participates can receive a monetary compensation of $50 for the MRI scans, $15 for MRI training, a souvenir picture of yours or your child’s brain, and feedback about your child’s performance from the clinical assessments.

What are the goals of the study?

This study is part of a larger medical research study to help us learn more about how the brain functions, especially when processing social information. We will do this by using magnetic resonance imaging (MRI). The information we learn from healthy, typically developing individuals will help us to understand the characteristics associated with 3q29 syndromes, which are rare genetic disorders that are associated with increased risk for developmental disabilities including autism, intellectual disability, learning disabilities, epilepsy, and schizophrenia.

What will happen during the visit or online?

The study will take place at the Marcus Autism Center and our imaging center, which is located at Wesley Woods on the Emory Campus. Participants will be asked to receive training on what to expect during an MRI scan, watch videos while resting in the MRI scanner, and receive clinical assessments which involve completing games and activities related to language and thought.

How will this help families?

Our mission is to learn more about 3q29 Deletion Syndrome and 3q29 Duplication Syndrome, and improve the quality of care for individuals with this diagnosis. Because the 3q29 Deletion and 3q29 Duplication are so rare, it is difficult for medical practitioners, families, and individuals to know what to expect. Our goal is to create a resource for families and professionals to address this gap in knowledge.

By participating in SPARK, you may have the opportunity to receive gift cards, complete additional surveys and learn about other studies from vetted researchers about topics that are relevant to you and your family. Also, there are resources available on the SPARK website that families have found useful and geared to your specific needs.

What are the goals of the study?

The mission of SPARK is to ignite research at an unprecedented scale to improve lives by advancing our understanding of autism.

What will happen during the visit or online?

Participation involves the completion of a brief online questionnaire, as well as a saliva collection kit from each participating member of the family. SPARK is free and can be done entirely from home. One of our team members can meet with you virtually to complete registration and answer any questions you may have. Alternatively, depending on your distance from CHOP, we can even meet with you in person at CHOP or at your home to complete the registration and saliva collection processes. We have extensive protective equipment and can easily conduct this visit in an outdoor space, like a driveway or front yard!

How will this help families?

By analyzing DNA from tens of thousands of individuals, SPARK has already identified new genetic changes that contribute to autism, and this number will only continue to grow.

What are the goals of the study?

The CHARGE (CHildhood Autism Risks from the Genetics and the Environment) Study aims to investigate the role of genetics and the environment on the development of children. Launched in 2003 , the CHARGE Study was the first comprehensive study of environmental causes and risk factors for autism and developmental delays. Investigators recognize that there is no single factor accounts for all autism cases, nor is there one event or exposure that can be responsible for the rapid increase in diagnoses over the last few decades. Instead, each child’s path to altered brain development may be different.

What will happen during the visit or online?

Children will complete an EEG recording and complete behavioral assessments. Parents will fill out questionnaire forms. A visit to the UC Davis MIND Institute with your child for developmental testing and a medical exam. Urine, blood, and other samples from your child and immediate family members. Responses to questions about your health, your child’s health and your home environment during the pregnancy and early years of your child’s life. Permission to obtain and review medical records. Permission for study staff to obtain banked blood samples collected when your child was born.

How will this help families?

You will be provided with results of your child’s developmental and behavioral testing.
You may find satisfaction in contributing to research on the causes of Autism and other developmental disabilities.
You will receive information and resources on ways to create a healthy environment for children.

ASD sibling risk study. Early identification of possible ASD. Environmental factors that may contribute to the development of ASD. First prenatal study of its kind.

What are the goals of the study?

MARBLES (Markers of Autism Risks in Babies – Learning Early Signs) is a longitudinal study to investigate possible risk factors that may contribute to the development of autism. Launched in 2006, the study enrolls women who already have a child diagnosed with autism and who are pregnant or planning an additional pregnancy. Parents of a child diagnosed with autism are more likely to have another child with autism compared to the general population (currently ~1 in 5 vs. 1 in 59).

What will happen during the visit or online?

Responses to surveys about family medical history, lifestyle and other factors that may influence your baby’s development. Details about your health, household product use and environment during pregnancy and until your child is 3 years of age. Urine, blood, environmental and other samples during and after pregnancy. Permission to access medical records concerning your child and your pregnancy. Permission for developmental testing of your child at 6, 12, 24 and 36 months of age

How will this help families?

Tracking baby siblings growth and development at various time points until child is 36mo.

Autism represents a diverse and varied conditions with much variation from person to person. With this study, we hope to help clinicians, parents, and loved ones better understand children with autism through more precise descriptors of core symptoms. Using these descriptors, we hope to help children and families gain access to services that are better tailored to their unique developmental needs.

What are the goals of the study?

The purpose of this research is to develop and test a new questionnaire that asks about autism symptoms more precisely by trying to measure both positive and negative symptoms. Once the project is complete, we expect to have a new questionnaire that is better at finding differences in how people’s autism is expressed and at measuring improvement in response to treatment.

What will happen during the visit or online?

You and your child will be asked to come to either of our locations (NYC or Pittsburgh) to participate. Once at our center, your child will be asked to complete clinical assessments with our team psychologists. Finally, you will be asked to complete a series of questionnaires and participate in a clinical interview, which can be completed remotely.

How will this help families?

You will receive a report of all testing done with your child, as well as face-to-face opportunities to meet with our team of ASD clinicians. You also can receive $100 for in-person participation and $20 per visit for costs of travel.