Understanding the Puzzling Pieces of Autism

Autism Research Studies

Below is a list of Autism Research Studies the Autism Society of Iowa has been contacted about.  The Autism Society of Iowa does not endorse any student, study or college listed, but would like to make families aware of studies available, that they can participate in.

 

Arizona State University – Autism Treatment Effectiveness Survey

You are invited to evaluate the effectiveness of treatments for autism, including medications, nutritional supplements, diets, therapies, and education. Our goal is to learn which treatments are most effective for different symptoms (language, anxiety, sleep, GI, etc.). Survey results will be posted on our website for families and clinicians, and published in a scientific journal. Your participation is voluntary. The survey will take 15-45 minutes, depending on the number of treatments you wish to rate. For more information, go to http://autism.asu.edu

 

Auburn University- Therapeutic Relationship between Primary Caregivers of School-Aged Children with Autism Spectrum Disorder and Speech-Language Pathologists: An Electronic Survery

You are invited to participate in a research study to determine factors that contribute to the therapeutic relationship between primary caregivers of school-aged children with Autism Spectrum Disorder (ASD), in Kindergarten through 5th grade, and their child’s speech-language pathologist (SLP). This study is being conducted by Rachel L. Nokes, Master’s student in Communication Disorders at Auburn University, and Dr. Allison M. Plumb, Associate professor in the Auburn University Department of Communication Disorders. You were selected as a possible participant because of your membership in the Autism Society for the state in which you reside.

What will be involved if you participate? If you decide to participate in this research study, you will be asked to complete an online survey form that includes 59 questions. Your total time commitment will be approximately 20 minutes.

Are there any risks or discomforts associated with participation? There is always a risk of breach of confidentiality with surveys, but this possibility is being addressed by keeping all responses completely anonymous with no identifying information whatsoever being collected and using all reasonable and customary security measures. The data will be stored behind a secure firewall, and all security updates are applied in a timely fashion.

Are there any benefits to yourself or others? There is no direct benefit to you for participating in this study, but it is hoped that the results of this study will help to provide needed information on how the parent-clinician relationship is viewed and valued by parents, factors that guide a positive relationship, factors that negatively impact this relationship, and what needs/expectations these parents have. This study’s purpose seeks to provide professionals in speech-language pathology and related fields with valuable information and recommendations to incorporate into family-centered intervention for children with ASD.

Will you receive compensation for participating? You will receive no compensation for completing this survey; however, your participation would be greatly appreciated.

Are there any costs associated with participation? There are no costs associated with this survey, except for the few minutes of your time that it takes to complete the survey.

If you change your mind about participating, you can withdraw at any time by closing your browser window. Once you have submitted anonymous data, it cannot be withdrawn due to it being unidentifiable. Your decision about whether or not to participate or to stop participating will not jeopardize your future relations with Auburn University or the Department of Communication Disorders.

Any data obtained in connection with this study will remain anonymous. We will protect your privacy and the data you provide by NOT asking for any identifiable information. Information collected through your participation may be presented at state or national conferences and may be published in a professional journal.

If you have questions about this study, please contact Dr. Allison Plumb at amp0016@auburn.edu.

To begin the survey, click here.

 

Emerson College

  • Researchers at Emerson College and Boston University are conducting an online survey about how your child asks questions and uses pronouns. The survey has two parts which take no more than 20 minutes each to complete. You will receive an $8 Amazon gift card for your help.
  • To see if you qualify, please visit:www.tinyurl.com/HowKidsTalkSurvey.

 

GoAlly.co

  • Goally is a startup developing a “smart clock” to enhance your child’s ability to perform routine activities of daily living independently.  Goally is a stress-reducer for busy parents and a way of helping children develop a sense of mastery and control.
  • They are currently seeking beta testers to test a prototype Goally for 2 weeks (zero cost) and provide feedback.  Beta volunteers should:
  • Have a child with autism between the ages of 5 and 18
  • Be willing to provide feedback by phone and via the app during the test period
  • Go to https://goally.co/AS070 to sign up and learn more.

 

Iowa State University- Childhood and Wellbeing Puberty Study

Do you have BOY with a developmental or a mental health disability? Is he between the ages of 10 to 15 years old? Would you be willing to participate in an online survey on your experience and his experience going through puberty?

Click on this link for more information and to fill out the online survey: https://iastate.qualtrics.com/jfe/form/SV_9Y07JRhJ8spVR89

If you have any questions about this study, please directly contact jmphan@iastate.edu. Thank you!

 

Louisiana State University – ASD Caregiver Survey- Barriers and Treatments
I am a doctoral student at Louisiana State University. My colleagues and I are studying factors that affect caregivers’ experiences accessing diagnostic and treatment services for children with Autism Spectrum Disorder (ASD). We feel this is a particularly salient issue at present given recent changes in many major insurance policies as well as state and national initiatives surrounding ASD service provision.

Accordingly, we’ve developed an online survey for caregivers of children with ASD in order to better understand the process of accessing services, including factors affecting decision making in what services to pursue (evidence based vs. non-evidence based), and barriers experienced along the way. We hope you will consider sharing the information with primary caregivers who may be interested in helping us better understand how to improve the process of accessing effective services for ASD.

Here is the link for the anonymous survey, which has been approved by Louisiana State University’s Institutional Review Board. http://lsu.qualtrics.com/jfe/form/SV_3HKbJrmrneXVBCR

Lindsey Willis Williams, MS, CRC
Louisiana State University
Doctoral Student, Clinical Psychology
6000 University Ave # 450, West Des Moines, IA 50266
Phone:(515) 241-2000

 

 

University of Iowa Children’s Hospital Autism Center – Behavioral Treatment Using Telehealth for Children with Autism – Division of Pediatric Psychology, Center for Disabilities and Development, and Department of Psychiatry

A Treatment Research Opportunity  We are currently accepting referrals for participants in a research study on Behavioral Treatment Using Telehealth for Children with Autism. This study is funded by the National Institute of Mental Health. Scott Lindgren and David Wacker, faculty members in the Stead Family Department of Pediatrics at the University of Iowa, are the principal investigators for this study. Todd Kopelman, Kelly Pelzel, Matt O’Brien, Wendy Berg, and Linda Cooper-Brown are co-investigators at the University of Iowa. Nathan Call is the lead investigator at the Marcus Autism Center at the Children’s Hospital of Atlanta, and Dorothea Lerman is the lead investigator at the Center for Autism and Developmental Disabilities at the University of Houston – Clear Lake. Children in Iowa, Georgia, and Texas will participate in the study.

Purpose of the Research  The primary purpose of this research study is to evaluate the effectiveness of functional analysis and functional communication training, which are applied behavior analysis (ABA) procedures, in decreasing problem behaviors displayed by young children (ages 18 months to 6 years) with an autism spectrum disorder (ASD). All behavioral assessment and treatment procedures will be conducted through telehealth coaching for the parents using internet links to the family’s home. The study will compare whether different approaches to scoring and analyzing behavior observation data produces the same positive outcomes. One approach to treatment will include a more streamlined behavior assessment procedure and less extensive data scoring and coding of the behavior that is observed in weekly telehealth sessions. Half of the children will be assigned randomly to each of the two treatment groups. All children will receive active treatment; there is no control group that receives only a “placebo” treatment.

Study Procedures  We plan to include 50 children at each site over the course of this 4-year project. All children who participate in this research study will be displaying problem behaviors (e.g., tantrums, non-compliance, aggression, self-injurious behaviors) at the time of their inclusion. Each child from Iowa will be evaluated by research staff at the UI Children’s Hospital in Iowa City to confirm that they meet the diagnostic criteria for an ASD. As part of this evaluation, parents will be interviewed about their child and asked to complete checklists about their child’s behavior and about their own levels of stress and mood. Following confirmation of an ASD diagnosis, a behavioral evaluation (functional analysis) will be conducted in the child’s home. Parents will receive coaching on procedures via a video conference from a behavioral consultant located at the UI Children’s Hospital. A computer for teleconferencing and a connection to internet service will be provided for those families that do not already have these services available. Following the behavioral evaluation, we will then train parents to conduct a treatment called functional communication training (FCT), which has been reported in the scientific literature to be effective for many children. The behavioral evaluation and treatment will typically last for up to 6 months for each child. We will also check back with each family 6 months after treatment has been completed to see how the child and parents are doing and to complete a video observation probe. Families will be reimbursed for the cost of travel to attend the initial evaluation in Iowa City at the start of the study. There will be no costs to families in the study other than their time to participate.

Data Collection  We will make video recordings of all observation sessions. These recordings will be stored on a password-protected server and will be erased at the end of the project. We will also have parents complete several checklists during the study. All information collected as part of this research project will be kept confidential.

Making a Referral  If you are aware of any children who have an ASD, who are between 18 months and 6 years – 11 months of age, who engage in problem behaviors, who live in Iowa in an area that has access to high-speed internet, and whose family might be interested in the project, please have the family contact Todd Kopelman by phone or email at 319- 356-2491 or Todd-Kopelman@uiowa.edu. A copy of the Informed Consent Document, which provides additional details about the study, is available for review. Thank you for your interest in this study. Please do not hesitate to contact us with any questions or requests for more information.

 

 

Michigan State University- ImPACT Parent Online Training Study- Enrollment Age Extended to 8yo

Our friend and colleague at MSU, Brooke Ingersoll, has extended the enrollment age to age 8 (96 months) for her ImPACT parent online training study. If parents are open to being a research participant, this is a good opportunity for caregivers to learn techniques to improve their child’s engagement, language, play, and imitation skills, particularly if they are not in an area of the state where they have good access to local ABA/NDBI programming.

Please visit their website for details about the study – if parents are interested in participating, have them contact the lab coordinator so they can receive their own personal access code to the online site.


Northwestern University- Family Genetic Study of Language in Autism

This research study explores how key developmental, behavioral, and neural features may relate to skills in autism and be heritable in families. Our goal is to inform the causes of autism, and to understand how the genes involved in autism may play a role in language and other important skills.

STUDY OBJECTIVE: To understand the brain and gene basis of language and related skills in individuals
with autism and their family members
IMPORTANCE OF STUDY: Involves the use of exciting and innovative technologies for studying language and social features; Helps us further understand genes related to features of autism
WE ARE LOOKING FOR: Individuals with autism, their parents, and grandparents of any age; Individuals without autism
PARTICIPATION INCLUDES: Solving puzzles; Completing measures of brain activity; Talking about your friendships and the ways that you relate to other people; Providing a blood sample
COMPENSATION AND TIME: Participation involves either 1 or 2 visits; Participants will be compensated for their time

Researchers at the Neurodevelopmental Disabilities Lab at Northwestern University are conducting a research study funded by the NIH to explore how developmental, behavioral and neural features may relate to skills in autism and be heritable in families. In particular, the research team is looking for individuals who grew up in Iowa and think they may be related to someone with autism to participate in their study, such as parents and grandparents. This is because they study how performance on the Iowa Test of Basic Skills (ITBS) may relate to autism symptoms in the next generation. Through this work, they are learning more about how genes associated with autism are inherited through generations and may relate to different language and cognitive skills.

If you or someone you know may be interested in participating, please contact the team at 877-275-7187 or familystudy@northwesternedu. You can also visit their website http://ndl.northwestern.edu to learn more about their work!

 

University of Iowa – SPARK – Igniting Autism Research – Improving Lives  

If you or your child has a professional diagnosis of autism, the University of Iowa invites you to learn more about SPARK, a new online research study sponsored by the Simons Foundation Autism Research Initiative. The mission of SPARK is clear: speed up research and advance understanding of autism by creating the nation’s largest autism study. Joining SPARK is simple – register online and provide a DNA sample via a saliva collection kit in the comfort of your own home. Register in person at the University of Iowa Medical Research Center by contacting us at SPARK-study@uiowa.edu, or visiting www.SPARKforAutism.org/uiowa. Together, we can help spark a better future for all individuals and families affected by autism.

 

University of Iowa Research Study: DECISION MAKING OF YOUNG ADULTS ON THE AUTISM SPECTRUM AND THEIR CAREGIVERS – CALL FOR PARTICIPANTS

  • An inter-disciplinary team from the University of Iowa is undertaking a multi-faceted study of high-functioning young adults on the autism spectrum. Our focus is on their decision-making styles and outcomes as they face both routine everyday decisions and, because of their stage in life, life-altering decisions concerning education, employment, and personal relations.
  • In the current study we focus on comparisons between persons on the spectrum and their caregivers in terms of how persons on the spectrum perceive themselves and how others perceive them.
  • We are seeking both persons on the spectrum and their caregivers to complete an online survey for which they will be paid $20. If you reply by sending us your contact information, it merely means that you’ve given us permission to contact you later about the details of the study but without implying any commitment on your part.
  • Beyond the monetary compensation, we hope that you will see this as an opportunity to increase society’s understanding of what persons on the spectrum have to offer.
  • If you are interested and are at least 18 years old, please respond by indicating your name, your email address and whether you are on the spectrum or are a caretaker for someone on the spectrum. Please respond to the following e-mail address: TCOB-decisionmaking@uiowa.edu
  • If you are a person on the spectrum and are interested in participating, please share this notice with a caregiver. If both you and your caregiver participate, you will be asked to independently fill out separate surveys and each of you will be compensated.

 

University of Southern Mississippi

  • Parents of children and adolescents ages 7-17 are invited to participate in a research study examining parenting strategies, parental stress levels, and their child’s behavioral presentation.
  • Parents are invited to participate if they have a child with:
    • Autism Spectrum Disorder (or Asperger’s Disorder or PDD-NOS)
    • Attention-Deficit/Hyperactivity Disorder
    • No developmental, behavioral, or emotional diagnoses
    • (Please note: If the target child has any siblings who live in the household, those siblings must not have been diagnosed with or suspected to have any developmental, behavioral, or emotiona diagnoses)
  • Parents will complete questionnaires via a secure, online website.
  • This study has received approval from The University of Southern Mississippi Institutional Review Board.
  • Please contact Elizabeth Fair at elizabeth.c.fair@usm.edu for more information or if you would like to participate.

 

University of New Brunswick – Quality of Life Autism Study

I am a researcher involved in a project on quality of life for parents and their children with ASD. The study is for parents of children with ASD aged 8-11 – looking at factors related to children’s quality of life.
The link to the survey is here: https://survey.psyc.unb.ca/qolconsent.aspx
We are on twitter: @autism_unb and @autism_QOLMandy Fulton, BA(Hons)
PhD Candidate in Clinical Psychology
The University of New Brunswick