Periodically, The Arc of New Jersey receives requests to disseminate information regarding surveys and research studies focused on intellectual and developmental disabilities and related topics. It is the policy of The Arc of New Jersey to post information about these surveys and research studies on this page, enabling visitors to click on the related links if they are interested in participating. Only surveys and studies which are sponsored by an accredited educational authority or nationally recognized research entity, and/or approved by an Institutional Review Board (IRB) will be posted. Posting on this page does not indicate endorsement of the study, survey or researcher by The Arc of New Jersey. Participation in a survey or research study is at the discretion of the individual.
Normal Pressure Hydrocephalus Study
Are you living with Idiopathic Normal Pressure Hydrocephalus and willing to share your opinions in a paid interview? Pillar Patient Advocates is working with a market research firm who is hoping to include 8 adults or caregivers in a 60-minute phone/web interview, there is also a short pre-work assignment to complete prior to the interview. In appreciation, participants are paid $145 for their time and input. If interested, please email Erin Pilkington at EPilkington@PillarAdvocates.com with your phone number. We will reach out to you to discuss the study and go through a few screening questions. This study is for US residents only.
Pillar Patient Advocates is a private patient advocacy firm whose mission is to help patients navigate the complex issues of the healthcare system so that they can make the best choices available to them along their journey. As advocates, we help patients understand their diagnosis, book the right appointments, work through insurance issues, and assist them in any way we can. Thanks to our strong relationships with patients, market research firms began to reach out to us to see if we can assist them with inviting patients to be a part of their paid health-related market research studies. This has become a crucial part of our business because it provides us with additional funds so that we can assist our patients at a minimal cost; and it also benefits the patients involved because they are paid for their time, and they get to share their stories and opinions directly to healthcare and pharmaceutical companies. The studies that we work on primarily focus on understanding the needs and lifestyles of patients in order to provide them with better treatment options.
An Interview Study Exploring Self-Advocacy
A doctoral student at the Rutgers Graduate School of Education is searching for adults with disabilities that graduated from high school, between the ages of 22 and 37, who would be willing share their self-advocacy experiences in adulthood. Eligible participants will be contacted to schedule two separate Zoom interviews. All information shared is confidential. For more information, click here.
University of Delaware's Autism Lab fNIRS Study: Families can participate in a study examining brain activity in infants, children and adults with and without Autism Spectrum Disorder, 3 months to 50 years; when performing various play or functional skills. This study involves 3 visits to our lab in Newark, Delaware. fNIRS is completely safe and non-invasive. A cap with LED lights is placed on the participant’s head as he/she completes activities. Payment = $30 total. To volunteer, email abhat@udel.edu or call (302) 831-7608.
SPARK, autism genetic study
The study is conducted in part by Children’s Specialized Hospital and is sponsored by the Simons Foundation Autism Research Initiative (SFARI)
- SPARK is the world’s largest autism research community, with a goal of recruiting 50,000 families to participate.
- The study is conducted online and individuals and families with an autism diagnosis who live in the United States can register.
- Participants will be asked to share information about their medical and family history, as well as to provide a saliva sample for genetic analyses to help speed up research and advance our understanding of autism. SPARK is analyzing DNA to improve our understanding of the roles that genes play in the development of autism.
- SPARK will provide gift cards for saliva samples in the amount of up to $50, and will provide additional incentives for the completion of online questionnaires.
- Children’s Specialized Hospital, is one of 31 SPARK clinical sites across the country.
- Participants also have the opportunity to participate in other research studies through SPARK research match if you choose to share your information with the researchers.
- To learn more about SPARK, You can visit the SPARK FAQ page at www.SPARKforAutism.org/CSH
- SPARK research line (908) 301-5958
- email: sparkcsh@childrens-specialized.org
No Deadline - Ongoing Study
Seeking Research Participants: Autistic Adults with Limited or No Spoken Language
Researchers from Rowan University invite you to participate in a research study. They are looking for the following participants for a study on mood in minimally verbal or nonverbal adults.
Participants must:
- Be 18-45 years old
- Have a previous diagnosis of an autism spectrum disorder (ASD)
- Communicate with single words or phrase speech, or use no verbal speech at all
- Be able to walk
- Have a parent or close caregiver who is also willing to participate.
Please contact Robyn Himelstein of the Tracking the Blues Study Team, via phone 856-431-2816 or email (SEAHL@rowan.edu) for more information. The study involves coming into our lab at the Rowan main campus (Glassboro) for about two hours. Questions? Contact Dr. Katherine Gotham (Principal Investigator) at gotham@rowan.edu. This study has been approved by the RowanSOM IRB (Study # PRO-2021-700)
Seeking Research participants: Autistic Adults with Limited of No Spoken Language
Rowan University wants to learn more about emotional health and markers of depressed mood in people who do not use spoken language fluently.
They are inviting adults to participate in a research study. Participants will respond to questions about their thoughts and feelings, and they will look at faces on a computer screen. Participants must:
- Be 18 - 45 years old
- Have a diagnosis of an autism spectrum disorder (ASD)
- Communicate with single words or phrase speech, or use no spoken words
- Be able to walk, see, and hear
- Have a parent or close caregiver who is also willing to participate
Contact: SEAHL@rowan.edu
856-431-2816
This study has been approved by the Rowan University School of Osteopathic Medicine Review Board (NUMBER) For more information, contact Robyn Himelstein at (SEAHL@rowan.edu)
Diagnostic Study at Rutgers University
Researchers from Rutgers University are recruiting participants and their parents or caregivers for a research study assessing the utility of a diagnostic interview for autism evaluation.
In order to participate in this research study, individuals should:
- Have a diagnosis of a genetic, neurodevelopmental or mental health condition (e.g., Down syndrome, ADHD, Intellectual Disability, Anxiety, Autism)
- Be between 10 years old to 35 years old.
- Have a parent/caregiver who can provide information about childhood development and current behavior and experiences.
For more information, please click here. This study was approved by the Rutgers IRB (Project ID: Pro2021000805).
ECU Survey
You are being invited to participate in a volunteer, online survey titled Perceived Accessibility to Public Transit being conducted by Dr. Kaylyn Levine, an Assistant Professor at East Carolina University in the Department of Geography, Planning, and Environment. The goal of this research is to understand how accessibility impacts first and last mile travel to public transit in the United States.
The survey will take about 20 minutes to complete and is conducted on Qualtrics. Your identity will not be tied to your survey responses. The survey is completely voluntary and may be stopped at any point.
If you would like to participate in this survey, please use the link below to begin:
https://ecu.az1.qualtrics.com/jfe/form/SV_6lBf6Qme9dpso6O
If you have any questions about this study, email levinek23@ecu.edu.
Texas Christian University (TCU): Seeking Research Participants
We are conducting a research study on the effectiveness of screening tools in detecting autism spectrum disorders in children. We are seeking parents or caregivers of children between the ages of five and eleven whose children have received a formal ADOS score. Participation will take no more than 10 minutes and will involve filling out a short survey. Participation is completely voluntary, and data will be deidentified and stored on locked computers at TCU. If you are interested, please click the link to access the survey. There are no known risks involved in this research and you may opt out of the survey at any time. If you have any questions, please do not hesitate to contact Dr. Phil Esposito at p.esposito@tcu.edu or (817) 257-6866.
ASD Study for Communication Difficulties - IRIS Study
- Flyer
- Contact:
- Email: Alyssa.Verdes@nyspi.columbia.edu
- Office: 914-997-5532
FIU Embrace
Are you a parent or primary caregiver of a child aged 12 to 25 years old with autism and/or intellectual disability? If so, we invite you to participate in an important research study conducted by the FIU-RCMI and FIU Embrace at Florida International University (FIU).
Study Focus: We aim to understand parenting styles and their impact on various aspects of youth development, including employment, academic success, independent living, and social outcomes.
How You Can Help: By participating in this study, you contribute to improving the lives of youth and families within your community.
You qualify to be in the study if you:
- Are a parent or primary caregiver of a child with autism and/or intellectual disability.
- Reside in the USA
- Can read and write in English or Spanish.
Compensation: Receive $40 for completing online surveys. Activities can be done via phone and online.
Contact Us: Call us at (305) 348-5478 or email embracestudy@fiu.edu to learn more.
Thank you for your valuable participation!
¿Eres padre o cuidador principal de un niño de 12 a 25 años con autismo y/o discapacidad intelectual? Si es así, te invitamos a participar en un importante estudio de investigación realizado por FIU-RCMI y FIU Embrace en la Florida International University (FIU).
Enfoque del Estudio: Buscamos comprender los estilos de crianza y su impacto en diversos aspectos del desarrollo juvenil, como el empleo, el éxito académico, la vida independiente y los resultados sociales.
Cómo Puedes Ayudar: Al participar en este estudio, contribuyes a mejorar la vida de los jóvenes y las familias en tu comunidad.
Calificas para participar en el estudio si:
- Eres padre o cuidador principal de un niño con autismo y/o discapacidad intelectual.
- Vives en Estados Unidos.
- Puedes leer y escribir en inglés o español.
Compensación: Recibirás $40 por completar encuestas en línea. Las actividades se pueden realizar por teléfono y en línea.
Contáctanos: Llámanos al (305) 348-5478 o envía un correo electrónico a embracestudy@fiu.edu para obtener más información.
¡Gracias por tu valiosa participación!
Research Study: The Grief and Bereavement Experiences of Children with Intellectual Disabilities
Purpose: to understand what the experience is like for children with intellectual disabilities when someone significant in their life has died.
- Participation in this research involves one interview with the primary caregiver of a child with ID who has experienced the death of someone significant in their life at least six months ago, and not more than three years ago. The interview lasts approximately one hour, and participants can optionally include their child for a short portion of the interview in which they ask their child several questions.
- Interviews will be conducted via Zoom or phone.
- Participation is voluntary
- Participants will be given a $25 gift card to thank them for their time.
Who may be eligible?
- Parents/guardians over 18 who have a child with an intellectual disability
- The child was between the ages of 5-17 when they experienced the death of someone significant in their life (such as a parent, sibling, grandparent, or friend)
- The death was at least 6 months ago and no longer than 3 years ago
How do I participate? Contact arlengaines@umaryland.edu or call 240-242-7424 to learn more about this study.
Participate in Doctoral Dissertation Research on Experiences of Latino/a Parents/Caregivers of Adult Children with Autism
Hello! My name is Alicia Maldonado and I am a doctoral candidate in Counseling Psychology at Saint Elizabeth University. I am conducting research for my dissertation on the experiences of parents/caregivers of adult children with autism and their navigation of the healthcare system. I am seeking participants from a Latino/a background who have a child diagnosed with autism and whose child is over the age of 18 years.
Participation involves an interview via Zoom or in person, lasting approximately 30 minutes to 1 hour. Your involvement will provide valuable insights into the cultural impact on the healthcare system, highlighting both barriers and achievements.
If you are interested in participating or would like more information, please contact me at amaldonado02@steu.edu. Your participation is voluntary and confidential.
Thank you for considering contributing to this important research!
Experiences of Latina Single Mothers Raising Children with ASD
My name is Shaila Alvarez and I am a 5th year clinical psychology doctoral student working on my dissertation. I have worked closely with the Latino community providing mental health services (assessment and treatment for ASD) for the past couple of years and it’s something I’m very passionate about. I am reaching out to seek participants for my dissertation study. In particular, I am seeking single Latina mothers who have a child diagnosed with ASD. The purpose of this study is to gain a better understanding of the experiences of Latina single mothers raising children with autism to serve as a foundation for future interventions aimed at providing effective support. All information shared by participants will of course be anonymous and participants will earn a $15 Amazon gift card for participating in the study.
Parental Well-Being Study at Rowan University
My name is Abigail Moretti and I am a doctoral student in Rowan University's Clinical Psychology Ph.D. program. I am conducting a study examining how parents of children with autism prefer to participate in virtual parental well-being groups. Parents participating in the study will receive 6 hours of virtual well-being groups, free of charge, and will be assigned to different group formats. The groups will target parental well-being, be entirely virtual, and will be scheduled based on participant availability. After the completion of the virtual group session(s), parents will receive two sessions of virtual parent training to learn skills to address their child’s challenging behavior.
I am contacting you to see if you could pass along this study information to parents of children with autism in your organization. Parents can participate if:
- They are at least 18 years old
- They have a child aged 5-12 with autism and co-occurring challenging behavior
- They speak English
- They have access to a device with audio and video capabilities.
- They can identify another adult to assist with participation
If parents are interested in participating, they can complete this survey: https://forms.gle/qx5bpjtHyU8EVo1K8
If they have any questions, they can email me, the co-facilitator, at morett94@rowan.edu
This study has been approved by Rowan University's IRB (Study # PRO-2023-5).
Thank you in advance for passing along this information to parents of children (ages 5-12) with autism and co-occurring challenging behavior! I will happily answer any questions you may have about this study.
IDD Parent Advocacy
Greetings! My name is Kate, and I am a project coordinator at UNC-Chapel Hill. My team and I are conducting a virtual parent advocacy study for parents and caregivers of youth with intellectual and developmental disabilities (IDD). We welcome parents of this population – with children aged 11-27 – to participate in a total of four virtual parent groups. In these groups, parents share experiences and work alongside a facilitator to build advocacy skills while navigating their child’s transitional period of life. Our overall goal is to improve parent and caregiver mental health.
You can learn more about our study at https://iddparentadvocacystudy.unc.edu.
Seeking Research Participants - Adults with Down Syndrome
My name is Jackson Pearce, and I am a genetic counseling student with the MGH Institute of Health Profession’s Genetic Counseling Program. I am conducting a study investigating the autonomy of adults with Down Syndrome/Trisomy 21 within health and medical care. This study has been IRB approved and we are looking to recruit interested participants via your organization/newsletter. We are looking to recruit individuals who are 18 years of age or older, have a diagnosis of Down Syndrome/Trisomy 21, have attended at least one medical or health related appointment within the last 6 months, and have held some autonomous responsibilities such as a job or volunteer role. This study consists of a 5 to 10-minute long anonymous eligibility survey, and a follow-up 30 to 60-minute survey if patients meet the eligibility criteria and complete a consent or assent process. Should you have any questions, please contact me at jpearce@mghihp.edu or my research faculty Gayun Chan-Smutko at gchansmutko@mghihp.edu.
Parental Well-Being Study at Rowan University
This study is aimed at providing support for parents of autistic children to improve their well-being and is examining how parents prefer to participate in virtual parental well-being groups. Parents participating in the study will receive 6 hours of virtual well-being groups, free of charge, and will be assigned to different group formats. The groups will target parental well-being, be entirely virtual, and will be scheduled based on participant availability. After the completion of the virtual group session(s), parents will receive two sessions of virtual parent training to learn skills to address their child’s challenging behavior.
Parents can participate if:
- They are at least 18 years old
- They have a child aged 5-12 with autism and co-occurring challenging behavior
- They speak English
- They have access to a device with audio and video capabilities.
- They can identify another adult to assist with participation
If parents are interested in participating, they can complete this survey: https://forms.gle/qx5bpjtHyU8EVo1K8
If they have any questions, they can email me, the co-facilitator, at morett94@rowan.edu
TCU Study
My name is Claire Thompson, and I am a medical student working with Dr. Philip Esposito at Texas Christian University (TCU). We are hoping you will assist us in trying to recruit participants for our research study. We just need a few more participants in order to complete the study. We are conducting a research study on the effectiveness of screening tools in detecting autism spectrum disorders in children. We are seeking parents or caregivers of children who are between the ages of 5 and 11 years old. Participation will take no more than 5 minutes and will involve filling out a short survey. Participation is completely voluntary, and data will be deidentified and stored on locked computers at TCU. If you are able, please distribute the attached page of information to anyone who may be interested in participating in the study or to anyone else in your organization who may be able to assist us in recruiting participants. If you have any questions, please do not hesitate to contact Dr. Phil Esposito at p.esposito@tcu.edu or (817) 257-6866.
Assessment of Parenting Styles and Preferences
Now enrolling: Parents of autistic children (3-7 years old) in the U.S for an online study exploring parents’ assessment and preference for different parenting styles.
Who: Parents of autistic children, 3-7 years old, with a suspected or confirmed diagnosis of autism. Parents must be over the age of 18 years old, read/speak English, and have access to the internet.
Why: To better inform culturally appropriate interventions, our study aims to better understand parents’ preferences for different parenting styles.
What: Participants will watch videos of parent-child interactions and complete questionnaires.
Expected Duration: 30 - 45 minutes
Compensation: Chance to win 1 of 20 $50 prepaid Amazon gift cards!
If you are interested in participating, please click here to complete the eligibility screener and provide consent, or email autism@binghamton.edu with any questions. This study has been approved by the Institutional Review Board (IRB) at Binghamton University.
HCBS Outcome Measure Study
Researchers in the Rehabilitation Research and Training Center on Home and Community-Based Services at Shirley Ryan AbilityLab are looking for people who receive HCBS to pilot test surveys designed to evaluate the person-centeredness of their services. Participants will undergo a brief screening and consent call (Zoom or phone, unpaid) and will complete two or more 10-minute surveys on different aspects of their HCBS (online, via Zoom with a research assistant, or via phone) and will receive a $30 gift card for each completed survey. Participants will complete the same surveys 2 to 9 months later for $40 per completed survey. Participants can complete up to 6 surveys for a total of $200.
To see if you are eligible for the study, take this quick screener: https://redcap.link/hcbsquality For more information email hcbs-rrtc@sralab.org.
This research is funded by the National Institute on Disability, Independent Living and Rehabilitation Research (IRB#: STU00214517).
The RRTC on HCBS is located within the Center for Rehabilitation Outcomes Research (CROR) at Shirley Ryan AbilityLab. CROR shares content on Facebook, X and LinkedIn:
Facebook: @rehaboutcomes
LinkedIn: www.linkedin.com/company/center-for-rehabilitation-outcomes-research
RUBI for Autistic Adults study currently enrolling participants at the AJ Drexel Autism Institute (Drexel IRB number: 2406010600)
The AJ Drexel Autism Institute is recruiting for a new research study for:
· Autistic adults (18+ years old) who experience mild-moderate behavioral challenges that impact daily routine, safety, self-care, and/or quality of life;
· Caregivers of autistic adults.**
**Caregiver and autistic adult pairs (“dyads”) should be living in the same home at least 50% of time throughout participation in this study
In collaboration with Seattle Children’s Hospital and Els for Autism Center, our team at the AJ Drexel Autism Institute helped co-develop a new intervention, the RUBI for Autistic Adults (“RUBI-A”) program. The goal of this intervention is to help autistic adults and their caregivers work together to come up with helpful solutions to daily challenges. We hope that the RUBI-A program can help support both autistic adults and their families at home and in their communities.
Participation in the RUBI-A study will last up to 20 weeks. Virtual and in-person options may be available for participation (interested participants are encouraged to reach out to study staff for more information or clarification). After speaking with research staff and completing questionnaires and evaluations to confirm eligibility, individuals will be randomly assigned to one of two programs: the RUBI-A program or an autism psychoeducation program. Participants will complete program activities (e.g., attend virtual or in-person intervention sessions, complete assignments) and answer online questionnaires throughout their participation in both interventions.
We encourage both caregivers and autistic adults to work collaboratively during this study, however, there are options for autistic adults and their level of participation (based on preferences and capacities):
· Participate in ALL study activities (questionnaires and intervention responsibilities)
· Complete questionnaires ONLY
· Complete intervention responsibilities ONLY
· Participate in NO study activities but consent to their caregiver(s) completing study activities
Both caregivers and adults will be compensated for their time completing questionnaires across study timepoints.
If autistic adults or caregivers are interested in learning more or participating, they may reach out to the study team via email (RUBI@drexel.edu) or via phone (215-571-3219 – text or call available) to learn more.
Autism Resource Cart
My name is Charlotte Cundiff. I am a Research Assistant for the SAFE Behavior Lab at Rowan University. I am looking for autistic adults, parents of autistic adults & children, and registered nurses (RNs) to participate in our study titled: Development of an Autism Resource Cart to Support Healthcare Delivery to Autistic Patients. I came across your page and think some of your members would be a great fit for this study. The goal of the study is to improve healthcare experiences and accessibility for autistic individuals through the evaluation of materials for an autism resource cart. Input from autistic adults, parents of autistic adults or children, and registered nurses (RNs) may contribute to large-scale initiatives to support autistic patients and providers across healthcare settings. This study involves attending a 1-2 hour session at Rowan University, evaluating potential materials, and completing a brief survey. Participants receive a $75 virtual gift card compensation. All procedures will take place in-person at Rowan University, located at 201 Mullica Hill Road, Glassboro, NJ 08028. This study has been approved by Rowan University’s IRB (Study #PRO-2024-240).
Link - https://docs.google.com/forms/d/e/1FAIpQLSdqXLYj9p3sVrayTYPdMRamXLt3kbWeXNw2yn5mSeJ5rCrnWg/viewform
Recruiting for NIH-funded Study about Perspectives on Precision Medicine Research on Cerebral Palsy
Broadly speaking, precision medicine research on cerebral palsy (PMR-CP) refers to studies exploring potential genetic factors contributing to a CP diagnosis. PMR-CP has the potential to impact individuals like the protocol director of this research study, Dr. Kevin Mintz, who has CP.
Kevin Mintz, PhD, received his Ph.D. from the Department of Political Science at Stanford University in 2019. He also holds an AB in Government from Harvard College, an MSc in Political Theory from the London School of Economics and Political Science, and a Doctorate of Human Sexuality from the Institute for Advanced Study of Human Sexuality. Kevin was a Postdoctoral Fellow in The Department of Bioethics at the National Institutes of Health. His research focuses on disability bioethics, research ethics, business ethics, and the degree to which genetics should be used to construct social or political identities. He was born with cerebral palsy and his lived experience with this disability affects his research in bioethics.
We want to understand how those who live with CP and those who care for them think about the potential benefits and harms of PMR-CP on the community. If you are willing to assist us with recruitment, please respond to this email and we will send a follow-up email with our screening questionnaire, as well as answer any questions you may have. Your time is valuable and we greatly appreciate in advance your consideration of this request.
Research Opportunity for Caregivers of Children with autism spectrum disorder
Caregivers of children diagnosed with autism spectrum disorder (ASD), we would love to hear from you!What: Baylor University is recruiting caregivers of children diagnosed with ASD to participate in an online survey about family life and quality of life. Your voice will help improve tools used to support families like yours.Who is eligible:
- You’re 18+, English-speaking, and your child’s legal guardian
- Your child is 3–12 and has an ASD diagnosis from a healthcare provider
- If you have multiple children with ASD, please answer about the first child diagnosed (age 3–12)
Participation:
- 10–30-minute online survey
- 5-minute follow-up survey two weeks later
As a thank you, you will be entered into a raffle for a chance to win one of two $25 Amazon gift cards!
Questions? For more information, please contact Anna Milliken at anna_milliken1@baylor.edu Interested in participating? Click on this link to complete the survey questions: https://baylor.qualtrics.com/jfe/form/SV_3ZTI6wVW72eGGIC
UAB Research Study - BrainREAD
We're reaching out from the Department of Psychology at the University of Alabama at Birmingham (UAB). As part of the UAB Cognition, Brain, and Autism Research group, we wanted to introduce ourselves and share information about our ongoing research study, BrainREAD (Brain and Reading Enhancement in Autism spectrum Disorder). We are recruiting children with and without autism (ages 7-13 years) who have strong reading fluency and accuracy skills (ability to read at age level with minimal errors), but difficulties in reading comprehension.
This National Institute of Health (NIH)-funded project tests the efficacy of a rigorous reading intervention on reading comprehension and brain responses in autistic and non-autistic children with comprehension difficulties. Participants will receive an intervention through Lindamood-Bell Learning Processes called Visualizing and Verbalizing (V/V) for Language Comprehension and Thinking. In our previous studies, we have found significant success with this intervention, and we are now extending the application of our science to children to receive the V/V intervention free of cost if they are eligible for the study.
Those interested may contact us at (205) 202-0616 or CAS-cbalab@uab.edu.
Feel free to visit our website for more information https://sites.uab.edu/cbra/. Let us know if you have any questions!
Opportunity to Participate in a Sexual Health Education Research Study
The Ohio State University and Lincoln Memorial University are conducting a research study evaluating the feasibility of a sexual health education program for autistic adolescents and young adults (AYA). This study aims to improve access to developmentally appropriate sexual health education.
Participants will engage in virtual sessions, learn about relationships and safety, and contribute to important research. Eligible participants will receive compensation for their time.
Please contact Chloe at chloe.bevilacqua@osumc.edu for more details.
Montclair State University Research Study
My name is Alma Almasarwah, and I am a graduate research assistant in the Spatial Development Lab at Montclair State University. We are conducting an IRB-approved study on spatial navigation abilities in adults with Down syndrome (ages 35–50), and we are hoping to share this opportunity with your community.
Participants with Down syndrome will complete fun computer, board, and paper-based games, and caregivers will complete questionnaires about everyday navigation experiences. The study takes about 4 hours total, split across 2–3 days, and participants receive a $120 gift card.
Testing takes place at the Center for Clinical Services at Montclair State University (147 Clove Road, Little Falls, NJ), with free parking available. We can also conduct testing in homes or service-provider locations when appropriate.
Please feel free to contact us at msuspatialdevlab@gmail.com or Dr. Jennifer Yang at yangyi@montclair.edu, and our website is https://www.msuspatiallab.com/.
Research study on the lived experiences of autistic young adults and their caregivers during the transition from high school to adulthood
About the study:
• Autistic young adults ages 18–26
• A parent or legal guardian participates in a separate interview
• Fully virtual and scheduled at the family’s convenience
• Includes a short survey, a capacity‑to‑consent conversation, and interviews
• IRB‑approved through Edgewood University
The goal of this research is to elevate autistic voices and better understand what truly supports young adults and their families during the transition to adulthood. Their insights can help shape more responsive, inclusive, and effective services nationwide.
Link to flyer with more details
Amanda Menting, Ed.D. Candidate amenting@edgewood.edu 920‑570‑9658
Study on Parenting, Patience and Disability
We are launching a longitudinal research study at the Baylor Center for Disability and Flourishing exploring how parents experience and understand patience while raising children with developmental disabilities (ages 11-17). We will be developing practical resources to support parents as their children with intellectual disabilities or autism transition toward adulthood. We hope to involve nearly 1,000 parents from across the country—including your state.
You can find more information here.
ABC - DS Study
The Alzheimer Biomarkers Consortium-Down Syndrome (ABC-DS) is a 5-year research project where we follow a group of adult volunteers with Down syndrome to find signs and risks of Alzheimer’s. As part of the study, we gather data through brain scans, blood tests, and exams that look at how people with Down syndrome think.
They welcome participants who:
- Have Down syndrome and are 25 years or older
- Are accompanied by parent, caregiver, or legal guardian
Participants will
- Make visits to our site to complete thinking tests, brain imaging, and other medical tests
- Complete questionnaires at each visit
- Be compensated for their travel and time
- have a thinking, learning, or developmental disability like autism, Down syndrome, Fragile X syndrome, cerebral palsy, or a language or learning disorder
- Were pregnant in the last 10 years
- Used Medicaid (state’s health insurance) during pregnancy
Family Advocacy Survey
We’re sharing an opportunity for families of young children with disabilities to participate in a nationwide research survey on advocacy experiences in early childhood special education. The survey is voluntary, confidential, and takes about 10 minutes to complete.
Sharing your story can help identify how to better support families with young children in special education.
Click the link to access the survey
Latina Mothers' Descriptions of Coping with and Caring for a Pre-teen with Autism: A Qualitative Descriptive Study
This study is to reveal strategies for Latina mothers to cope with caring for a pre-teen with autism. See the flyer below for more info.