Autism Research Studies

Who Can Participate?

• Caregiver and autistic adult pairs living in the US who currently live at home together.
  • Adults 18 years or older with a documented diagnosis of autism
  • A Parent, Caregiver, or Legal Authorized Representative (LAR)
• Must be able to read and write fluent English.

What Will You Do?

• Over the 20 week study period, autistic adults and their caregivers will work together to participate in intervention sessions and complete study measures.

Benefits To You:

• Learn better strategies to support yourself in the home and community.
• You will receive compensation upon completion of questionnaires across study timepoints.

You can contact the research team via email RUBI@drexel.edu, or by calling or texting 215-571-3219 if you would like to learn more about this study or if you there are accessibility issues or concerns.

Click Here to Sign Up: https://outlook.office365.com/book/RUBIforFamiliesandAutisticAdults@drexel0.onmicrosoft.com/

Caregivers of children ages 0–17 who have been diagnosed with autism are invited to complete a brief, anonymous online survey. The survey takes approximately 5–7 minutes to complete. The findings from this research will help inform more meaningful, targeted support for families of children with autism.

Link to survey: https://alliant.qualtrics.com/jfe/form/SV_9RHpFotQAACqoFo

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.

You are able to participate if you have a family member that has been diagnosed with autism spectrum disorder. Participation includes a one-time electronic survey that will take approximately 11 minutes to complete.

Your participation is voluntary, and you may stop completing the survey at any time you wish. You are expected to experience minimal risk while taking this survey and your participation may support the advancement of accessibility to autism services. Your survey data will be confidential.

Contact Emma Travis, emmatravis@creighton.edu, (763) 438-5115, or Anastasia Kyvelidou, AnastasiaKyvelidou@creighton.edu, (402) 280-5749, with any questions.

If you would like to take the survey please click here: https://blueq.co1.qualtrics.com/jfe/form/SV_6AsgCXugyCVq1U2

Who can participate?

We are inviting mothers and their young children aged 14-month to 36-month-old to take part in the Autism Genetics and Epigenetics Study (AGES). We are looking for both typically developing children and those with developmental delays.

Taking Part in the AGES Study is easy as A-B-C

We designed the AGES study so that most of the research activities can be done at home using a smartphone tool called BabySteps. The study will last 6 months and include one CDD clinic visit.

• Audio Recordings: Your child will carry a small recording device for one day to record their communication patterns.

• BabySteps Smartphone tool: You will do short research activities each week, such as:
  • answering questionnaires
  • responding to app notifications

• Child Genetics: During your child’s visit, we will collect a blood and buccal cheek sample. The purpose is to identify chemical markers from these samples.

You will be paid up to $100 for taking part in this study.

To check your eligibility, please complete this screening form:  https://redcap.icts.uiowa.edu/redcap/surveys/?s=LKHPJ9DWDC4YTKCM 

If you have any questions about the research study itself, please contact us at babysteps@uiowa.edu, or call the Attachment and Neurodevelopment Lab on 319-356-7140.

We are asking families or caregivers of children with IDD and ASD to take part in small focus groups (discussions) answering questions about their experiences with children with IDD/ASD and ED visits. These focus groups will be recorded.

Compensation for participation will be $25/hour for families or caregivers for approximately 2 hours of participation. The study will take place in the Des Moines metro area, and in-person attendance is required.

Prior to participation, you will be provided with an informed consent document you can read through. Researchers will confirm your interest in participating in the study and provide you with details regarding the date, time, and location of the meeting at this time, researchers can also answer any questions you have. Once you arrive at the focus group, consent will be reviewed again.

If you are interested in participating, or know someone that may be, please email Dr. Valdovinos at maria.valdovinos@drake.edu or Dr. Jeglum at sara.jeglum@unitypoint.org.

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!

You are invited to participate in a research study. In order to participate, you must be at least 18 years old, able to consent to participate for yourself, and have watched at least one television show in the past year. Taking part in this research study is voluntary. You are not required to participate in this study. You may stop or withdraw your participation from this study at any time.

1. Purpose of the Study
 This study is being conducted to see how people with differing levels of monotropic traits choose to watch television shows. The purpose is to see how focus influences how people watch and interact with television shows.

 2. Benefits of the Study 
There are no direct benefits for participants in this study. Your participation may make you think more about how you watch television and how you focus on different topics. For the primary investigator there is potential of scholarly publication or presentation. For the scholarly community, this study will hopefully add to the knowledge gap surrounding how adults who have monotropic traits watch and interact with media.

3. What You Will Be Asked to Do
You will be asked to fill out an online survey which takes around 15 minutes. It asks about your television watching habits, gauges levels of monotropic traits, and includes demographic questions. You must be at least 18 years old, able to consent to participate for yourself, and have watched at least one television show in the past year to participate.

4. Withdrawal from the Study
You are free to withdraw your participation at any time by exiting the survey page and to omit answers to any questions you do not feel comfortable answering. If you withdraw participation before completing the survey, any collected data will be destroyed.

5. Risks
There are no risks or discomforts more than normal everyday life associated with this research. There are a few questions about neurodivergent and mental health diagnoses which could be uncomfortable, you may skip any questions if they make you uncomfortable.

6. How the Data will be Maintained in Confidence
All data will remain anonymous, and no names will be associated with any data resulting from this study. If you choose to withdraw participation in this study by exiting the survey before completion, any collected data will be destroyed. All survey data will be stored on a password protected computer. Additionally, informed consent forms will be kept for a minimum of 3 years upon completion of this study on a password-protected computer.

7. Use of information beyond this study
Identifying information may be removed and this de-identified information for future research without additional informed consent from the participant.

8. If You Would Like More Information about the Study
If you would like more information about this study before, during, or after participating, please contact the Primary Investigator, Samantha Armstrong, at sarmstrong2@ithaca.edu. You may also contact the faculty advisors for this study, Jack Powers, or the IRB of Ithaca College for additional information. Ithaca College IRB approval #554.

If interested, fill out survey here.

Join a research study about autism to learn people’s views on autism, gene/environment interactions, and co-occurring health conditions via a 60-minute focus group on Zoom.

You may participate if you are in one of the following groups: 

• A person on the autism spectrum who is age 18 and older.
• A caregiver/parent of someone on the autism spectrum.
• A medical provider who has worked with individuals on the autism spectrum and their families.
• An adult sibling (18+) of someone on the autism spectrum.

PARTICIPANTS WILL RECEIVE A $50 GIFT CARD.

If you are interested, please fill out the form at the following link: Interest Form

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

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.

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.

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.

The research goal is to measure the characteristics of inclusive participation in the decision-making process. We are asking about past experiences and expectations for the future.
This survey far-reaching goal is to help adults with autism to advocate for their needs for inclusive decision-making processes.

Incentives: 
There will be a chance to win in a lottery to get a gift card in participation in the online survey. Opportunities to participate in drawings will be provided to all eligible participants. They will be entered into a drawing for one of “1 of 6” $50 gift cards for Target. A total of 6 cards will be distributed.
By law, payments to participants are considered taxable income.

Click Here for the Survey:
https://osu.az1.qualtrics.com/jfe/form/SV_e2v2GEJz5SoLPcF

The IRB authorized the research: Study Number 2019B0545.

The Pregnancy Decisions App Project is looking for people who are: 

• 18-50 years old 
• Live in the US 
• Have a developmental disability (including intellectual disability and autism) 
• Able to get pregnant (even if it is unlikely) 

We’re providing a $25 Amazon gift card to anyone who completes the survey. There are researchers available to assist individuals with taking the survey. The survey generally takes between 30-60 minutes to complete. 

Click Here for Survey: https://www.ohsu.edu/university-center-excellence-development-disability/reproductive-health-research

Who Can Participate? For this study, we hope to capture a range of experiences within a family unit. We are interviewing autistic adults (aged 18 and older) with distressing behaviors, their siblings, and/or their parents. We hope to interview at least two family members within a family.

What Will You Do? Complete a screening and, if eligible, a 10-15 minute survey. Our team will schedule a 1-hour Zoom or phone-interview – individually with each family member. Review a brief summary of your interview (about 10 minutes).

How can you enroll? If interested in enrolling, please fill out the following survey: https://redcap.link/siblings

Questions? Contact Meghan Burke at (615) 343-1014 or meghan.burke@vanderbilt.edu

The study will test the usefulness of an online training tool with videos for parents that model parent/child interactions on healthy relationships and sex (discussions about healthy boundaries, refusal skills, pregnancy prevention, STI prevention, seeking help etc.).

Participation will entail participants:

• engage in an audio recorded conversation with their child on a pre-determined topic related to healthy relationships and sex.
• watch the parent/child interaction videos.
• engage in a second audio recorded conversation.

As a thank you for participating, parents and youth will receive $200 and $50 e-gift cards respectively.

SkillFlix ASD Pilot Recruitment Flyer

SkillFlix ASD_Parent Consent Form

SkillFlix ASD_Youth Assent Form

Participants will receive a $30 Amazon gift card electronically as compensation. Please note that participation in the study is voluntary.

Eligibility to participate for autistic adults includes:

• age 18 or older (and their own legal guardian)
• has a formal diagnosis of autism spectrum disorder (verified via report)
• has at least an estimated 6th grade reading level
• can speak and read English

Interested autistic adults can complete a screening survey to see if they are eligible to enroll in the study at the following link: Click here

A flyer with information about the study is attached.

Feel free to reach out to me directly at amahadeo@mednet.ucla.edu, or Hillary at hschiltz@mednet.ucla.edu with any questions regarding the study.

The DN Lab at UCSD is looking for:

• Autistic Adults
• Parents/Caregivers of an Autistic Person
• Relatives of an Autistic Person
• People Who Work with Autistic Persons (e.g. teacher, speech and language therapist, psychologist, social worker, medic, etc)
• Autism Researchers

Check out our Facebook post here: https://www.facebook.com/UCSD.DNLab/posts/pfbid02w8mB2SxWbrpaFv1ybr5kcn98eCj3vEUjB6kqKaE6GnL5W7JqyByNgy3hsfW8Vqoxl

If interested in participating, fill out our survey by clicking here: https://ucsd.co1.qualtrics.com/jfe/form/SV_55DdfvV5K8FuQce

My name is Sarah DeAngelo. I am an autistic adult and a PhD candidate in Special Education at the University of Illinois at Chicago, where I share recruitment materials for my dissertation study with individuals in relevant groups.

What Participation Involves

• A 60-minute interview on Zoom (with the option to break it into shorter sessions if preferred).
• Participants use whichever communication methods are most comfortable for you (spoken, typed, AAC, etc.).
• Participation is voluntary; participants may skip questions or stop at any time, and identifying information will be kept confidential. After the interview, participants will have the opportunity to review the transcript and a summary of their responses, and can make changes if they wish.

How to Participate

Interested individuals can use this link to complete a short eligibility screening questionnaire: https://www.redcap.ihrp.uic.edu/surveys/?s=M3FLDMP39K7JNEYW

You may also contact me directly at sdeang3@uic.edu  with any questions.

If you agree to participate, we would like you to participate in an interview, a focus group, or
both. You will also be asked to complete a short survey.

If you are interested in participating, please contact Rima Desai at rima-desai@uiowa.edu or
Michelle McQuistan by phone at 319-335-7524.

If we do not hear from you, we will attempt to contact you two additional times by email and
then three times by phone. If you do not wish to participate or be contacted again, please contact
Dr. Rima Desai or Dr. Michelle McQuistan.

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.

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.

The Study aims to understand the relationship between level of parenting stress on child’s communication skills. Participants will also receive $40 for your participation.

Eligibility:

• PARENTS OF CHILDREN WITH A DIAGNOSIS OF AUTISM SPECTRUM DISORDER
• CHILDREN MUST SPEAK/SIGN LESS THAN 30 FUNCTIONAL WORDS
• CHILDREN MUST BETWEEN THE AGES OF 4 AND 10 YEARS
• WILLING TO SPEND UP TO 4 HOURS OVER 2-3 CALLS
• LIVE IN MIDWESTERN US

Benefit: This study will include no-cost parent and child assessments administered through parent interviews, including level of parenting stress and children’s communication abilities.

For more information and a clickable flier, click here. For the consent form, click here. If you are interested, please contact Suma Suswaram at suswaram_suma@ku.edu or (785) 331-8805

“IDD” is the term often used to describe situations in which intellectual disability and other disabilities are present. Examples of IDD include autism, behavior disorders, brain injury, cerebral palsy, Down syndrome, fetal alcohol syndrome, intellectual disability, and spina bifida, among many others.

Please answer the following questions about yourself to the best of your ability. We will contact you shortly! Please note: No further information regarding immigration status will be required to participate in this study.

Thank you for taking the time to complete the survey below! If you have any questions, please contact us at projectpathways@umd.edu

Click Here for Survey:  umdsurvey.umd.edu/jfe/form/SV_2bqjUK9DORLH8X4

Participating in SPARK is free and can be done entirely from home.

• Registration takes 20-30 minutes to complete online.
• You will be asked to complete a few online questionnaires after registering.
• SPARK will send you a saliva collection kit that you can mail back for free.
• Individuals with autism are eligible for Amazon gift codes valued up to $50.

Click Here to Learn More and Sign Up: https://sparkforautism.org/?code=mutc

Questions? Email tcresearch@missouri.edu or call 573-303-8405.

If you choose to participate, you will create an educational journey map and participate in a 90-
minute Zoom interview. An educational journey map is a diagram that reflects the relationship
between education and your Autistic identity, which you would create on your own prior to the
interview and could take up to 90 minutes to complete. Directions and support for creating the
educational journey map will be provided.

If you wish to participate, you must be:
 Autistic, either through self-diagnosis or formal medical diagnosis
 Have at least one child between the ages of birth to 8 years old
 Live in Wisconsin, Minnesota, Illinois, Iowa, or Michigan

Participation is completely voluntary. For more information, or to sign up, please contact
Christina Ihnen at ihnen@wisc.edu. Thank you!

Christina Ihnen (she/her)
ihnen@wisc.edu
Department of Rehabilitation Psychology and Special Education, University of
Wisconsin—Madison
IRB 00100591
Project Title: Autistic Family Engagement in ECE: Explorations Using Educational Journey
Mapping

Participants will first enroll in the Spectrum for Life – Interconnected Surveys Project (S4L-IS; VUMC IRB approval number: 201086) and then will be able to choose from their preferred survey topics.

The interconnected studies are nationwide surveys conducted entirely online.  The studies cover a variety of topics, including employment, health and wellbeing, bullying, environmental resources, sensation and perception, personality, and characteristics related to autism.

Each survey topic is taken separately.  The time it takes to complete some survey topics is as short as 5 minutes while other topics can take up to an hour to complete.  Participants are able to save and return to the studies. For a printable flyer, click here.