Research Study and Clinical Trial Resources for Autism Caregivers

Research Study and Clinical Trial Resources for Autism Caregivers

Association for Science in Autism Treatment

ASAT is an organization of parents and professionals committed to improving the education and care of people with autism. Learn about research being done on evidence-based and non-evidenced based interventions and more.


Autism Speaks

Many opportunities are available for families to participate in Autism research. Join a clinical trial, enroll in a research study, contribute to a genetic database, or participate online by adding your family information to a research database.


Developmental Disabilities Family Clinics


Institute on Disability and Human Development

Parents: We want to hear from you. We are interested in hearing from parents of teen-aged girls (ages 13-17) with diagnoses of autism spectrum disorders to help plan future programming.

Please take a few minutes to fill out take this anonymous survey

Thank you!! Questions or concerns can be directed to:
Nicole Quintero, PhD, BCBA-D, nquinte@uic.edu


The ION Study  

Sarely_Licona@rush.edu
312-942-6331

Social skills groups and oxytocin: We are conducting a unique study of oxytocin and social skills groups. In this study, two models will be tested; one group will pair oxytocin, a hormone thought to improve social learning in individuals with ASD, and a social cognitive therapy curriculum and the other will be a facilitated play group.  We are currently recruiting verbally fluent children ages 8-11 years old with ASD. This study will help us explore oxytocin’s potential in boosting attention and learning during a therapy. 

Ages: 8-11 years


Loyola University Chicago 

The Healthy Adjustment in Teens Study (HATS)
Principal investigators: Rebecca Wasserman, MA, and Amy Bohnert, PhD
(773) 508-2962
hats@luc.edu

Researchers are conducting a study to understand what contributes to better adjustment in high functioning adolescents with autism spectrum disorders and are looking for participants. To be in the study, your child must have a current diagnosis of autism, read at a sixth grade level, and verbally communicate on a regular basis with family and peers. You and your child will answer questions about your child's adjustment, social abilities, friendship quality and executive function abilities. You and your child will be given the option of filling out paper measures or completing the measures online. It should take approximately 35 minutes for parents and ten minutes for youth to fill out the forms.

Age eligibility: 12-17 years.


Midwestern University Occupational Therapy Program 

(630) 515-6188

Wanted: Occupational therapy researchers seeking young adults with autism spectrum disorder between the ages of 16-30 years.

We want to learn about the challenges and ways you adjusted to transition from high school into more adult roles. Participation will involve an interview that will last up to one hour. The interview will occur at a place and time that works best for you. We would also like to interview parents of individuals with autism spectrum disorder.


Mirror Me 

Sarely_Licona@rush.edu
312-942-6331

This is an early intervention research study examining the use of online programs to teach parents of toddlers and preschoolers with ASD. We are assessing how parents use interactive websites to learn the strategies involved with early interventions, including Reciprocal Imitation Training (RIT), to improve critical social communication skills. We are interested in learning about the effects of these online programs on parent behavior, child functioning and overall family well-being. 

Ages: 1.5 – 5 years


National Autism Center

Autism Resources for Families: Being armed with information about autism spectrum disorder (ASD) helps families feel more comfortable as they face new challenges. Some families need to know where to start when one member of the family has been recently diagnosed. Other families face unexpected difficulties as their loved ones with ASD learn to live effectively in home, school, or community settings. We are dedicated to supporting families by making information and resources more readily available.

FREE PARENT RESOURCE: Download A Parent’s Guide to Evidence-based Practice and Autism


The National Institute of Mental Health 

Autism Spectrum Disorders and Repetitive Thoughts and Behaviors in Children and Adolescents — Has Medication Not Helped?
Pediatrics and Developmental Neuropsychiatry Branch
Lorraine Lougee, LCSW-C
10 Center Drive, MSC 1255, Building 10, Room 4N208
Bethesda, MD 20892-1255
(301) 435-6652 or (301) 496-5323
ocdnimh@intra.nimh.nih.gov

This is to study riluzole for obsessive-compulsive symptoms in children and adolescents. Children must be diagnosed with an autism spectrum disorder with severe repetitive thoughts and behaviors, or have moderate to severe obsessive-compulsive symptoms. Children must be currently taking, or have taken, a medication for repetitive thoughts and behaviors. Be able to participate in an initial one-day outpatient evaluation and brief outpatient visits approximately monthly for six months, and at months 9 and 12, at the NIH Clinical Center in Bethesda, Md. Children must forego any cognitive-behavioral therapy during the 12-week study.

Age eligibility: 7-17 years.


Understanding Autism Spectrum Disorders Among Illinois Children 

Principal Investigator, Lucy Bilaver
Northern Illinois University
DeKalb, IL  70115
(815) 753-2436
lbilaver@niu.edu
Co-investigators: Sandra Magaña, Cindy Chestaro, & Lizabeth Fernandez

The purpose of this survey is to describe the experiences of Illinois families with a child with ASD.  With information about the local experience, we can better inform the scientific and policy community about the Illinois experience.  If you are the parent of a child 18 years or younger who was diagnosed with ASD in the state of Illinois and would like to participate, please complete survey. Paper copies available.


Northwestern University 

Seeking individuals with an autism spectrum disorder for a research study to improve job interview skills.
Department of Psychiatry and Behavioral Sciences
Emily Ginger
446 E. Ontario, Suite 1000
Chicago, IL 60611
(312) 695-4293

Requirements: must have an autism spectrum disorder; one- to three-hour visits at the research office; unemployed or underemployed; and actively seeking employment.

Participation includes: computer simulated job interviews, interview role-plays and learning and memory assessments.

Age eligibility: 18-65 years.
You will be compensated for your time and travel.


Organization for Autism Research

Website created by parents and grandparents of children and adults on the autism spectrum to share life experiences and to use applied science to answer common questions.


Rush NeuroBehavioral Center

Is your child diagnosed with an autism spectrum disorder and does your child struggle to read emotion from facial expressions?
Jason Johnson, B.S., study coordinator
4711 W. Golf Road, Suite 1100
Skokie, IL 60076
(847) 763-7988
research@rush.edu

If your child meets the following criteria, s/he may be eligible for the research study: autism spectrum disorder diagnosis; average or above average intellectual functioning; and experiences difficulty with recognizing emotion from facial expressions.

Age eligibility: 8-14 years.

The study involves telephone pre-screening parent interview; screening assessment of your child's ability to perceive nonverbal cues from facial expressions (approx. three hours); twice weekly training sessions (up to one hour/session) for up to eight weeks; immediate post assessment and follow up to six weeks after completion; completion of questionnaires regarding your child's social and emotional learning skills; no fee for assessment or intervention; and feedback for parents.


Rush NeuroBehavioral Center

Jason Johnson, B.S., study coordinator
4711 W. Golf Road, Suite 1100
Skokie, IL 60076
(847) 933‑9339
RNBC_research@rush.edu

Recruitment call for research study: Do you have an 8-12 year old typically developing child or a child who is on the autism spectrum? Do they like computers? Do they like to participate in research?

Under the direction of Nicole Russo-Ponsaran, researchers are conducting a free study investigating the validity of new computer-based and game-like social-emotional learning assessment tool. Participation is free and participants will receive a $20 gift card.


The SPARK Initiative

Rachel_A_Gordon@rush.edu
312-563-7611

The goal of SPARK is to accelerate autism research in order to gain a better understanding of causes and treatments for autism. By building a community of tens of thousands of individuals with autism and their biological family members who provide behavioral and genetic data, SPARK will be the largest autism research study to date.  As part of a family’s participation in SPARK, we ask that participants register and complete a few questionnaires online, and provide a saliva sample using a saliva collection kit that will be shipped directly to their home or in the clinic. You can also learn more about SPARK or sign up by visiting www.SPARKforAutism.org/rush --- the individual with autism can earn up to $50 dollars once saliva samples are received.  

All ages welcome.


University of Chicago 

Has your child been diagnosed with autism spectrum disorder?
Taylor Dreher, program coordinator
(847) 238-2693
email: tdreher1@uchicago.edu

Dr. Megan Scott is seeking participants for a study investigating why some children with autism spectrum disorder behave aggressively. Your child will complete measures of autism symptoms, language ability, and IQ. As the child's caregiver, we would like you to track your child's feelings and behavior for 7 days by completing brief (3 minute) surveys on your cell phone throughout the day. We are offering a $25 gift card for those who complete the study. We also will reimburse for parking or public transportation. Who is eligible? Children, ages: 5-18 yrs.; diagnosed with autism spectrum disorder; caregiver with access to cell phone with data plan; primarily english speaking.


University of Illinois at Chicago 

Kate Caldwell
(312) 996-4711
lkcaldw3@uic.edu

You chose a date and location in Chicago area

This research is part of a project looking at social entrepreneurship as a pathway to employment for people with disabilities in Chicago. As part of our research, we are particularly interested in including the voices of social entrepreneurs with intellectual and developmental disabilities. Compensated $30 for participation.

You can participate if you: have an intellectual or developmental disability; live in the Chicago area; and have a business or non-profit.


University of Illinois at Chicago 

Contact: Susan Cahill (PhD student)

If interested, call (708) 214-7174 or email smcahill@uic.edu

Study focuses on understanding the perspectives of parents of youth with an autism spectrum disorder as it relates to educational experiences. Eligibility requirements include the ability to participate in a discussion with a relative stranger for 30-40 minutes about pictures. They must have the ability to ask other individuals whether or not they would mind having their photograph taken and have the ability to respond to the individual's answer. They must receive special education and/or related services. They must be able to follow written or picture checklists and should be permitted and encouraged by their teachers and other school personnel to take photographs throughout the school day.

Age eligibility: 14-21


University of Illinois at Chicago 

Study: Parents Taking Action
Principal investigator, Sandra Magaña
University of Illinois at Chicago
Department of Disability and Human Development
1640 West Roosevelt Road
Chicago, IL  60608
(312) 355-4537
maganas@uic.edu

The purpose of this study is to assess an educational program which aims to help families learn about autism, autism services, how to access them, and strategies for improving overall child behaviors. We use a randomized trial and wait-list design.  If you would like to participate, you will complete an initial questionnaire, and then will be assigned by chance (like flipping a coin) to either start the educational program immediately or wait for 8 months.  When you receive the program, a promotora (community health educator) who is also a parent of a child with ASD will engage you in 14 sessions of the educational program.  These sessions will be once a week in your home or a place convenient to you.  You will have two follow up assessments after completion of the program.

Age and eligibility: mother who identifies as Latino and has a child with ASD between the ages of 1 and 8 years old. Program will be in language of preference, Spanish or English.