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.
The Development of Spatial Abilities Study at Montclair State University
The Spatial Development Lab at Montclair State University is recruiting people with Down Syndrome and other intellectual disabilities (aged 12-25 years) to take part in a research study conducted by Dr. Yingying (Jennifer) Yang (Psychology Department).
Title: The Development of Spatial Abilities
Who is Eligible? People with Down Syndrome and other intellectual disabilities who are 12 to 25 years old.
Where? Montclair State University
Purpose? We are studying how spatial abilities develop.
What does the study involve?
Children will complete some fun computer, board, and paper games. Parents will complete several questionnaires about their child's daily behaviors. It will take 2-2.5 hours with many breaks included.
Compensation? Your child will receive a small gift and you will receive a $40 Amazon gift card.
If you are interested in participating, please email us at msuspatialdevlab@gmail.com or self-schedule an appointment on our website https://www.msuspatiallab.com/appointments. Please visit our website to learn more about our research https://www.msuspatiallab.com/. This study has been approved by the Montclair State University Institutional Review Board, MSU IRB #FY17-18-834
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)
MSU Autism and Neurodevelopment Lab: Recruiting for Paid Research Opportunity
Seeking Participants for Flexible Thinking Study at Montclair State University
Researchers at Montclair State University are looking for families with children and adolescents 6-17 years old that are typically developing or have/are suspected to have autism spectrum disorder to participate in an in-person study on how children switch their thinking and attention between tasks. We hope to better understand flexible thinking patterns and how they relate to social and emotional development. Participating families will receive a $50.00 gift card for completing this study.
Questions? Contact Montclair State University Autism and Neurodevelopment Lab at 973-655-3615 or email at erinkanglab@montclair.edu. For more information on our current research projects, please visit our website at www.erinkanglab.com
This study ends August of 2024.
Seeking Participants
This research study is investigating the ability to use multimedia nutrition content through social media to educate and train direct support professionals and managers who serve adults living with intellectual and developmental disability (IDD). Potential benefits of this important research study include establishing a low burden way to educate direct support providers around nutrition and healthy eating for adults with IDD. Participants may also learn about nutrition and healthy eating that they can apply to their own, everyday lives. See below for more details.
MOTHERS OF AUTISTIC GIRLS AND DAUGHTERS NEEDED: Please click link below for additional details.
The Pregnancy Decisions App Project
The Pregnancy Decisions App Project, led by Willi Horner-Johnson at Oregon Health & Science University (OHSU), is looking for people to interview for their research project about pregnancy and disabilities. The goal of the project is to create a phone app for people with developmental disabilities, including autism and intellectual disability.
The researchers are starting by doing interviews to understand what to put into the app. For example, the researchers want to know what would help you:
- Decide if you want to get pregnant,
- Prepare yourself for pregnancy, or
- Choose a way to prevent getting pregnant.
Interviews will last about an hour and can be done online, over the phone, or by email. If you do an interview, you will get a $50 gift card. Please see the flier for more information or go to their website (www.ohsu.edu/decisions-app) to learn more.
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.
The University of Wisconsin–Madison People and Robots Laboratory
The University of Wisconsin–Madison People and Robots Laboratory is looking for adults with Down syndrome to participate in a paid study in which you will complete a survey about your technology use. To be eligible for this study, you must satisfy the following criteria:
- Have Down syndrome.
- Are aged 18+.
- Live in the USA.
Duration: approximately 45 minutes (will vary per participant)
Payment: $15 upon completion of survey
Project PI: Professor Bilge Mutlu (bmutlu@wisc.edu)
If you are interested in participating, please scan the QR code on the flyer I've attached or go to the following link https://forms.gle/ra7GfR9FP8LH735e7 . Please email hljohnson22@wisc.edu with any questions.
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.
A Retrospective Exploration of Healthcare Communication with Adult Siblings of Individuals with Down Syndrome Over Time
My name is Madelyn Falk, and I am a graduate student at the MGH Institute of Health Professions in Boston, MA. I’m hoping to gain the perspectives of adult siblings of individuals with Down syndrome on their experiences with healthcare provider communication. The survey should take about 15 minutes to complete. The findings of this study may inform the development of recommendations to improve communication and support for siblings of individuals with Down syndrome.Anyone over 18 with a sibling with Down syndrome is eligible to complete the survey! Please click the link provided to complete the survey: https://redcap.link/healthcare_communication_siblings. If you have questions regarding this study, you may contact me at mfalk@mghihp.edu. Mass General Brigham IRB Protocol #: 2024P001853
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