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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.


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


Sex Education and Adolescents with a Disability: Parent and Teacher Attitudes and Effectiveness

To Whom It May Concern,
You are invited to participate in a research study on sex education and adolescents with a disability. The purpose of this study is to learn what varieties of topics in sexual education are being discussed or not being discussed with adolescents with a disability. The procedure includes filling out two questionnaires, one related to your child/student’s sexual behavior and history of sex education and the other, a demographics questionnaire. These can be completed online from your personal computer or electronic device. The study should take approximately 15 minutes.  The Monmouth University Institutional Review Board approved the study and procedures. The study involves no foreseeable risks or harm to you. However, you may experience discomfort disclosing information about their child or student’s sexual history. However, these are not uncommon topics; immediate risks are minimal and are equivalent to the risks that you may encounter in everyday life (i.e., it is common for adolescents be exposed to sexual topics in school or at home). The present study may benefit the field of special education by adding to knowledge about the discussion of sex education with adolescents with a disability. Parents of children with a disability may also benefit from findings of this study to further learn what sex education topics are in need to be discussed with their children. 

You are free to ask any questions about the study or about being a participant by calling me at 732-263-5216 or e-mail: slauderd@monmouth.edu. For questions about your rights as a research participant please contact Deborah Smith of the Institutional Review Board (IRB) by phone at (732) 263-5726 or via e-mail at irb@monmouth.edu.

Your participation in this study is voluntary; you are under no obligation to participate. You may stop answering questions or skip questions at any time if you feel uncomfortable. 

Data will be collected using the Internet; no guarantees can be made regarding the interception of data sent via the Internet by any third party.  Confidentiality will be maintained to the degree permitted by the technology used. The data you provide will be held in the strictest confidence. The completed study will not include individual results or responses. Confidentiality will be maintained. All data will be collected by Stacy Lauderdale-Littin, stored in a secure place and will be destroyed in three years.

To participate, or 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.

 


Depression and Sleep Disorders in Adults with Down Syndrome

Kennedy Krieger Institute is recruiting DS subjects age 18-35 years with mental health concerns such as loss of functional skills, low motivation, depressed mood, social withdrawal and motor slowing. We are also recruiting DS subjects without mental health concerns or functional decline.
We cannot accept DS subjects with aggressive, disruptive, or non-compliant behaviors. All subjects will receive a comprehensive evaluation assessing general level of function, behavior and mental health, sleep quality, as well as body shape/proportion and dietary/nutritional status. This study will include a sleep study, collecting urine, saliva, and a morning blood sample for biochemical testing.
The goal of the study is to improve our understanding of the relationship between sleep, stress, metabolism and mental health in persons with Down syndrome. The study requires one extended visit over a 2-3 day period, including 1 overnight visit at the Johns Hopkins Clinical Research Center. There are minimal risks and no direct medical benefits for participating. You will receive medical test results that may be of interest to you or your physician. A cash incentive is offered for your participation. 

We will try our best to accommodate your schedule!
For more information about this study, please contact me:
Noel Grissinger at (443) 923-9140
or by email at grissingern@kennedykrieger.org


A man wears a blue jumpsuit and a yellow construction hat.
A Caucasian man sits in front of a laptop.
Two hands use tools to fix an item.
A Caucasian man is dressed in a navy suit and striped tie.

Looking at Early Mentorship and Work-Exposure as Predictors for Type of Employment and Longevity in the Workforce for Individuals with Autism Spectrum Disorder

IRB #: NCR191183 
Principal Investigator: Dr. Maureen McGuire-Kuletz

We are asking individuals with ASD from the ages of 14 to post-retirement age to help us by taking a survey about employment and mentorship. Although there is no direct compensation, we hope this information will help us better understand how to support members of this community gain and sustain employment. The survey is anonymous. If you are a person with ASD, we'd love to hear from you by taking this survey, and/or if you know individuals with ASD who might consider taking this survey, we ask that you please pass this link (https://columbiangwu.co1.qualtrics.com/jfe/form/SV_2udHz8bst7O5aKN) or the flyer attached to them and the organizations with whom you work. 


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. 


2022 National Survey on Health and Disability

Seeking Participants 

The University of Kansas Institute for Health & Disability Policy Studies (KU-IHDPS) is looking for adults with disabilities to
complete the National Survey on Health and Disability (NSHD). The NSHD is an annual, online survey about your health,
quality of life, access to health care services, and the COVID-19 pandemic, as a person with a disability or health condition.

If you prefer to take the survey over the phone or have any questions about participating, please call toll-free 1-855-556-6328 (Voice/TTY) or email healthsurvey@ku.edu.

Survey link

 

  • In the pictures are
    A Caucasian female doctor uses a stethoscope to treat an African American female patient.

    A Caucasian man with an amputated leg sits outside.

    A blond Caucasian girl with Down syndrome wearing a bathing suit smiles in the pool.


Help Develop a New App That Helps Teens and Young Adults With Disabilities Speak Up for Their Needs

Teens and young adults ages 14-22 with intellectual or developmental disabilities can help develop a new app to evaluate skills for adulthood success and help speak up for their needs. The study involves one meeting either in person or online. A parent/guardian will also be asked to answer some questions about the teen/young adult. Compensation provided. To participate or ask for more information, please call 352-273-9365, email yell@phhp.ufl.edu, or visit https://yell.ot.phhp.ufl.edu. Please share widely in your community!

Deadline for this study is Dec 2022 


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 attached for more details 


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.

If you have any questions concerning this research study, please email ahodge44549@ucumberlands.edu.

 

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