Investigating neurocognitive profiles in parents of children with autism and anorexia

Researchers at Deakin University are seeking participants for an online study investigating how and why personality traits, characteristics, and behaviours associated with autism and anorexia are related.

What are the goals of the study?

We are doing this research because there is evidence that autism and anorexia might overlap, and we want to understand this overlap better. Better understanding of factors that contribute to the overlap between autism and anorexia will help us to better detect these conditions and offer appropriate support to those who require it.

What will happen during the visit or online?

If you choose to participate in this study, you will be invited to complete an online survey and computerised tasks. The study will take approximately 1 hour to complete, and upon completion, participants will go into the draw to win one of 10 AUD$150 gift cards.

How will this help families?

Improving understanding of these disorders will help us identify appropriate support for individuals with autism and improve clinical practice.

In less than 45 minutes, participants can help us understand the greater extent of mental abilities seen in autism and help dispel harmful per-conceived notions of the autistic mind.

What are the goals of the study?

This study aims to understand how people mentally represent others on a more nuanced level.

What will happen during the visit or online?

Participants will read short (4-sentence) stories and make True/False responses about the people in them. Then participants will read statements and judge how pragmatically sound they are for communication.

How will this help families?

Improving our understanding of the social brain can inform the way families affected by autism understand and interact with their loved ones. Allow them to enjoy an improved quality of life, based on an understanding of autism gained through scientific insights.

SOR is highly prevalent in individuals with autism spectrum disorder (ASD), causing discomfort and stress, impacting daily life.

What are the goals of the study?

The goal of the study is to see what effects transcranial magnetic stimulation (TMS) has on neurobiological mechanisms underlying sensory over-responsiveness (SOR) in individuals with autism.

What will happen during the visit or online?

Participants will undergo MRI and TMS as well as answer online questionnaires.

How will this help families?

To date there a few treatments for SOR and TMS could be a treatment that ends up dramatically improving the quality of life of ASD individuals and their families.

SOR is a highly prevalent feature of autism spectrum disorder (ASD). SOR can be highly disruptive yet there are few treatments to deal with this discomfort. This study can validate a readily available medication to be used as a treatment for SOR.

What are the goals of the study?

The goal of the study is to examine the short-term effect of propranolol on observed sensory over-responsiveness (SOR) behaviors. The study will also look at biomarkers (heart rate, sweat response, neural activity) associated with a SOR response to characterize the effect of propranolol.

What will happen during the visit or online?

Participants will take medication at two time points and then complete an MRI and sensory games. Families are also asked to complete questionnaires as part of the study. Short cognitive assessments may be completed to confirm eligibility for the study.

How will this help families?

Participating in this study will allow families to see if propranolol is an effective intervention for SOR and can help with discomfort or distress associated with it. This study can also lead to clinical trials aimed at finding more treatments for ASD individuals with SOR.

This study will look at how our participant’s sensory processing changes as they develop into adolescents. This is an important period of growth and can greatly inform us about what changes the brain undergoes during this time, something that can be useful for future studies.

What are the goals of the study?

A primary goal of the study is to understand how sensory processing develops over adolescence. We hope to identify neurobiological mechanisms related to sensory over-responsiveness (SOR) with the goal of informing the development of targeted interventions.

What will happen during the visit or online?

Participants will complete an MRI as well as some sensory games and questionnaires. There are some short cognitive assessments done to confirm eligibility for the study.

How will this help families?

Our study provides research reports to families describing their child’s sensory processing abilities in relation to their peers. This research may also help inform future research into treatment for sensory over-responsiveness (SOR)

Sensory-based interventions are commonly prescribed by occupational therapists in the treatment of children with autism spectrum disorder and related neurodevelopmental disorders. However, while there is emerging evidence for Ayres Sensory Integration therapy in individuals with IQs above 65, many studies evaluating the efficacy of various sensory-based interventions have demonstrated low or insufficient strength of evidence. This study aims to pinpoint interventions that might be promising candidates for targeted trials based on prevalence and perceived efficacy in a large community sample.

What are the goals of the study?

The purpose of this research study is to identify the sensory interventions and strategies that caregivers consider the most effective at treating or managing their child’s sensory reactivity symptoms.

What will happen during the visit or online?

If you agree to take part in this research, you will be asked to complete a 5-10 minute anonymous survey, which will ask you to identify your child’s sensory preferences and your satisfaction with the sensory interventions you use currently or have tried in the past.

How will this help families?

By participating in this study, caregivers of children with autism can share their experiences with the sensory interventions that have worked best for their child. The goal of this project is to use these responses to drive future research to improve the efficacy and accessibility of these strategies.

Autistic individuals experience depression differently, and at a higher rate, than typically-developing individuals, yet there is no measure that specifically measures depression in autistic populations. As such, we have created a new measure to look at depressive symptomatology as seen in autistic populations. Our study will provide us with a more complete understanding of autistic youth’s mental health, while also providing professionals with a more accurate understanding of how to tailor treatments for depressive symptoms in autistic individuals.

What are the goals of the study?

In our study, we are investigating the overlapping symptoms between depression and autism. The goal of this project is to learn more about depressive symptoms that autistic adolescents may show. We are also hoping to gain a better understanding of whether parents attribute such symptoms to their child’s primary diagnosis of ASD, or to depression, or to something else such as puberty or stress.

What will happen during the visit or online?

Adolescents will be asked to complete a questionnaire about their feelings over the last two weeks. This will take approximately 30 minutes. Parents will also fill out a questionnaire about their child’s feelings, behaviours, and emotions over the two weeks. Then, parents will be asked to complete another questionnaire about their child’s behaviours and emotions over the past 6 months. Together, this should take approximately an hour and a half and will be completed over Zoom. Parents will receive a $20 Amazon gift card and adolescents will receive a $10 Amazon gift card for participating.

How will this help families?

Co-occurring conditions such as depression in autistic individuals can increase stress on both the individual and their family. Our study will provide us with a more accurate understanding of the rate of depression in autism, how depression affects autistic individuals and their families, and how to care for families that are experiencing depression in autism. As such, we can begin to lessen the stress and other impacts that depression can have on autism, and improve the lives of autistic individuals and their families.

This study will help us learn more about early signs of emotional and behavioral challenges that many siblings of children with autism start to have by age 3. Findings from this study may help us identify and treat these challenges earlier in life. As part of the study, your child will receive multiple diagnostic evaluations from expert clinicians at the Yale Child Study Center.

What are the goals of the study?

We are recruiting infants for a study of emotional development. The study is looking at emotions in siblings of children with autism from 4-30 months of age. The goal is to learn more about early signs of behavioral and emotional challenges that may develop when children are 2-3 years old.

What will happen during the visit or online?

You and your baby will come to the lab for 5 study visits over 2.5 years. Each visit will last a few hours. During the visits, your baby will participate in clinical assessments, watch videos, and complete play-based tasks. You will fill out surveys and participate in interviews about your baby, yourself, and your family. All visits will take place in New Haven, Connecticut. Free and secure parking is provided. Families will receive up to $250 for being in the study.

How will this help families?

This study will help us learn more about early signs of emotional and behavioral challenges that many siblings of children with autism start to have by age 3. Findings from this study may help us identify and treat these challenges earlier in life. As part of the study, your child will receive multiple diagnostic evaluations from expert clinicians at the Yale Child Study Center.

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.

When you participate, your experiences help the medical community to understand your rare genetic disorder faster. We track health and development over time to help answer questions about the future of people with these rare disorders, and make it easy to connect you to researchers who want to include you or your child in research studies and clinical trials. Your unique experience could hold the clues that scientists need to find answers for you and others with rare genetic disorders.

What are the goals of the study?

Simons Searchlight is an international research program with the goal of accelerating science and improving lives for people with rare genetic neurodevelopmental disorders. We study over 150 genes that cause rare neurodevelopmental disorders, and our list is always expanding. You or your family member must have a genetic diagnosis of one of these conditions in order to join. The study is international, and families can participate in several languages. You can find our gene list and list of languages at SimonsSearchlight.org.

What will happen during the visit or online?

Simons Searchlight collects family, medical, developmental and behavioral information through online surveys and phone interviews with families and individuals. Optional blood collection is performed either remotely or at in-person patient organization conferences. Upload your clinical genetic results report, complete initial online surveys, provide our genetic counselors medical history information over the phone, provide an optional blood draw, and update us every year.

How will this help families?

Joining such a community enables families to find and engage with others with the same genetic condition, as well as providing opportunities to connect with researchers and participate in studies aimed at bettering our understanding of these disorders and, in some cases, clinical trials to advance supports and treatments.

FOXP1 syndrome is a monogenic condition related to autism. This study will help us to further understand FOXP1 syndrome and its phenotypes. Specifically, it would inform us if there are any specific changes that occur in these adolescents after they go through puberty that are specific to FOXP1 syndrome.

What are the goals of the study?

We are interested in understanding any changes individuals with FOXP1 are experiencing post-puberty, as there have been reports of changes in other neurogenetic disorders.

What will happen during the visit or online?

Parents or caretakers of people with FOXP1 syndrome will complete 3 virtual interviews. Each interview is about 1 to 2 hours. There will also be parent/caretaker questionnaires to complete which would take about an hour.

How will this help families?

This study will help families by identifying more specific phenotypes related to FOXP1 syndrome.