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
- 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.
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
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- Neurodevelopmental Disabilities Lab
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.
Participation in their study may range from filling out questionnaires on your own at home to meeting with the study team in-person to solve puzzles, talk about friendships, complete neural measures, and provide a blood sample. The study team can travel to you! 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 SPARKfirstname.lastname@example.org, 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: TCOBemail@example.com
- 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 firstname.lastname@example.org 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_QOL
Mandy Fulton, BA(Hons)
PhD Candidate in Clinical Psychology
The University of New Brunswick