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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.

Quality of life among caregivers of individuals with intellectual and/or developmental disabilities and dementia

Be a part of a research study investigating experiences and quality of life among caregivers of individuals with both intellectual and/or developmental disabilities and dementia. The purpose of this study is to examine the experiences of caregivers and caregivers’ quality of life. To be included, you must be a caregiver of an individual with both an intellectual and/or developmental disability and dementia.

If you meet this criteria, you are eligible to participate in this study. Interested participants will be entered into a raffle to receive a $20 gift card. The study will be conducted using an online survey. For interested participants, a follow up interview may be conducted over the phone or in-person to gather more information regarding the experiences and family quality of life.

If you are interested in participating, please visit the following link:

Or contact:
Christina Marsack, Assistant Professor, Eastern Michigan University

Do You Have a Disability or Provide Support to a Loved One with a Disability? Have You Worked in New Jersey, California, New York, or North Carolina?

If you answered “Yes”, researchers need to hear from you!

The Arc of the United States and the National Center for Children in Poverty at Columbia University are inviting people who live and work in New Jersey, New York, California, and North Carolina to participate in a study on paid family and medical leave and disability. The goal of the study is to look at how workers with disabilities and families that include people with disabilities use, need, and can benefit from paid family and medical leave programs.  These are programs that allow people to take time off work and receive full or partial pay to welcome a new child or baby, to address their own serious medical condition, or to care for a family member experiencing a serious medical condition.

To participate, you must have worked in New Jersey, New York, North Carolina, or California in the past two years AND be a worker with a disability age 18 or older, a worker who is raising a child with a disability, or a worker who provides primary and frequent support to an adult family member with a disability.

The study will involve and initial screening call or email, and, if eligible, and interview by video conferencing or phone that will take approximately 40 minutes.  Reasonable accommodations will be provided on request.  Participants who complete the interview will receive a $20 gift card in thanks.

How to Participate
Call 929-900-5398 or send an email with “The Arc” in the subject line to

Contact Suma Setty, Research Coordinator at

Research study of the experiences of fathers of children and youth with complex disabilities (ages 3-21)

Children with complex disabilities are identified within a variety of labels/classifications to include autism, multiple disabilities, and moderate to profound intellectual disabilities. Please take about twenty minutes to complete an on-line questionnaire found at:

There is very little existing research on the experiences of fathers in their children’s school settings, particularly fathers of children with disabilities. This survey serves to document your individual responses to this issue. The purpose of this study is to help us understand the experiences of fathers of children and youth with complex disabilities in their children’s school experiences.

 This survey is designed to be completed by fathers from a variety of backgrounds and differing experiences and we invite all fathers, step-fathers, or other important father figures who have school-aged children (ages 3-21) with complex disabilities to participate. Your participation is totally voluntary and there is no penalty if you do not wish to participate in this research project.

If you have any questions or desire further information, please contact Dr. Nadya Pancsofar at (609) 771-3150. 

Nadya Panscofar, Ph.D.                     Jerry Petroff, Ph.D.
Assistant Professor                             Associate Professor
(609) 771-3150                                   (609) 771-2308                   

This research project has been approved by the Institutional Review Board (IRB) at The College of New Jersey.  If you have any questions or concerns about your rights as a participant in this research study, you may contact the IRB at Your consent will be indicated by your completion of the questionnaire at THE SURVEY WEBSITE. 

Parental Roles and Attitudes Regarding Sexuality: Seeking Parents of Adults Diagnosed with an Intellectual Disability

This research study is investigating parents and caregivers who have an adult child with an intellectual disability and an adult child without an intellectual disability, and their experiences regarding sexuality and intimate relationship experiences of both their adult children.

Participants: Parents and primary caregivers of an adult between the ages of 18-30 who has a diagnosis of an intellectual disability. Parents must also have another adult child between the ages of 18-30 who does not have a diagnosis of an intellectual disability.

What Will You Be Asked to Do?

Parents who participate in the study will be asked to fill out an online survey that will take approximately 20 minutes. After completing the survey, you will have the option to enter into a drawing for one of 4 - $50 gift cards. You will also have the option to participate in a phone or online interview that will take approximately 60 minutes. You will be given a $30 gift card for your participation in the interview.

If you are interested in participating in this study, please complete the survey using the following link: