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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.

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: 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

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.

A study to improve access to high-quality dental care for people with intellectual and developmental disabilities 

This research project, which is a collaborative effort between The National Center for Children in Poverty, the College of Dental Medicine at Columbia University, Rutgers School of Dental Medicine, and the American Academy of Developmental Medicine and Dentistry, is sponsored by The New Jersey Council on Developmental Disabilities and has been approved by the Columbia University Medical Center’s Institutional Review Board, IRB Study AAAS0918 on 1/11/19. This survey will be active until May 1, 2019. 

This study is to learn about the availability of dental services for people with Intellectual and Developmental Disabilities (I/DD) in New Jersey and barriers to dental services and care from the perspective of dentists. This study is also being conducted to create a comprehensive, statewide database on dental practices and dentists in New Jersey. 

If you have any questions or concerns about this study, you may contact Suma Setty, the study coordinator, at or 212-304-6093. To participate in the study, click here.

We are interested in the experiences, thoughts, and feelings of "siblings-in-laws," the spouses of siblings of adults with Intellectual and Developmental Disabilities (IDD). Currently, very little systematic knowledge exists about this important group.

In the survey below, we ask questions that are divided into five sections. The first two sections ask you to provide background information about you, your spouse, your in-laws, and the adult with disabilities (i.e., your brother or sister-in-law) as well as your initial thoughts about being a sibling-in-law. The third and fourth sections explores your experiences of being a sibling-in-law, involvement in disability advocacy, and the degree to which you and your spouse care for your brother-sister-in-law. Finally, section five includes open ended questions about your overall perceptions about this relationship.

Your responses to this questionnaire are entirely voluntary and will be used, anonymously, in our ongoing studies of families of adults with disabilities. You may withdraw your participation at any time and may choose to skip any questions that you wish. A check in the box indicates that, as an adult married to a spouse who is a sibling to a person with a disability, you are eligible to participate. We also ask whether you have read and understand these conditions and that you authorize the use of your information in the questionnaire for research purposes. 

By filling out this survey, you agree to be a part of this study. For our part, we agree to report findings only in group form.

Click the survey link to learn more:


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

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. 

Do you have a child with Autism Spectrum Disorder?

Do you want to help in research?

• We are looking at how Theory of Mind relates to gaze behavior in children with Autism Spectrum Disorder ages 8-17.

• Theory of Mind is the ability to understand that others have unique thoughts, experiences, and knowledge.

• This study will take 40 minutes to complete and can be done either at The Center for Clinical Services at Montclair State University or at a mutually convenient location.

• Children do Theory of Mind Tasks and their eye movement behavior is recorded with an eye tracker.

Dr. Peter Vietze, Miss Sarah Phillips and Mr. Reuven Kranzler at MSU Psychology Department are doing this study. If you are interested in having your child participate in this study or for more information, please contact them at Or call at 201-724-4741.

The Montclair State University Institutional Review Board has approved this study.

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:

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 or call (302) 831-7608.

University of Delaware's Infant fNIRS Study: Families can participate in a study examining brain activity in 3 to 12-month-old infants with and without risk for Autism Spectrum Disorder as they play with toys and caregivers. 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. Participation payment = $100 ($25 per visit). To volunteer, or call (302) 831-7608.

To physicians that care for patients with intellectual/developmental disability (IDD):
Researchers at the University of Kentucky and the University of Louisville are inviting you to take part in a questionnaire about a visual tool they have developed as part of the My Choice Kentucky-Making Decisions in Healthcare project. This visual tool is being designed to guide conversations with patients with IDD and their supporters as part of the informed consent process. Your feedback will be used to revise the tool.

Although you may not get personal benefit from taking part in this research study, your responses may help us understand more about the utility of our visual tool in facilitating conversations between physicians, patients with IDD, and supporters during the informed consent process for medical care. Some volunteers experience satisfaction from knowing they have contributed to research that may possibly benefit others in the future.

The survey/questionnaire will take about 15 minutes to complete.

There are no known risks to participating in this study.

Your response to the survey will be kept confidential to the extent allowed by law. When we write about the study you will not be identified.

We hope to receive completed questionnaires from a minimum of 10 people, so your answers are important to us. Of course, you have a choice about whether or not to complete the survey/questionnaire, but if you do participate, you are free to skip any questions or discontinue at any time.

Please be aware, while we make every effort to safeguard your data once received from the online survey company, given the nature of online surveys, as with anything involving the Internet, we can never guarantee the confidentiality of the data while still on the survey company’s servers, or while en route to either them or us. It is also possible the raw data collected for research purposes will be used for marketing or reporting purposes by the survey/data gathering company after the research is concluded, depending on the company’s Terms of Service and Privacy policies. This survey is being administered to you using Qualtrics. If you have questions about the study, please feel free to ask; my contact information is given below.

If you have complaints, suggestions, or questions about your rights as a research volunteer, contact the staff in the University of Kentucky Office of Research Integrity at 859-257-9428 or toll-free at 1-866-400-9428. Thank you in advance for your assistance with this important project. 

Click this link to participate in the survey:

Parents of children with autism spectrum disorders (ASD) often struggle with the question of how and when to share information with their child about their diagnosis. As a Developmental Pediatrician caring for many patients with ASD, I have discovered there is very little research about parents’ disclosure of the diagnosis to their child.  Families as well as professionals would benefit from a systematic study looking at this issue. 

Cohen Children’s Medical Center of New York is conducting a major national study focused on parents’ perspectives and experiences related to sharing information about the diagnosis with their child with ASD.   If you are a parent of a child from 8 to 25 years of age who has been diagnosed with ASD (including Asperger’s Disorder or PDD), we would like your input.  We want to hear from those of you who have spoken to their child about their diagnosis as well as those who have not yet had this discussion.    

Please click on the link below to help other families by participating in this important research study:

This link is to an anonymous on-line questionnaire inquiring about your experience.  The questionnaire will take about 15 minutes to complete. 

If enough families complete our questionnaire, we hope to:

  • Have the most representative study done to date based on a large national sample of respondents
  • Give voice collectively to the experiences of hundreds of families
  • Provide information to professionals so they can better support families in this process going forward

A few important re-assurances:

  • Anonymity: All responses are anonymous
  • IRB Status: Our study has been reviewed by the Institutional Review Board at Northwell Health and approved as an EXEMPT study.  (Letter of exemption available upon request.)
  • Conflicts of Interest: None
  • Outside Sponsors or Funding: None

We appreciate your time and consideration.  A copy of our results will be offered to all families who complete the questionnaire.

An Invitation to Participate in a Study: “Caregivers’ Supportive Role for Obtaining Substance Abuse Treatment Services to the Intellectually Disabled Alcohol Abuser”

Dear Caregiver,

You are warmly invited to take part in a research study about caregiver’s understanding in finding substance abuse treatment services for a family member with an intellectual disability abusing alcohol. As a caregiver you are in an ideal position to provide important first hand information from your own experiences.

            I am inviting people over the age of 18, who speak and understand English, are not pregnant, and do not have major health problems to join and be part of the study. Even though posting on The Arc site, The Arc has no part in this study and will not know if you took part.

Background information

The reason for this study is to understand the steps caregivers take when seeking treatment services for a family member with intellectual disabilities abusing alcohol in the community.


If you agree to be in this study, I will ask you to:

  • Sit for one question and answer interview session, about one hour (30-45 minutes for interview, and 15 minutes for question or details)
  • I will use a tape recorder to make sure that I hear your answers correctly
  • I will only ask questions that are part of the research study

Here are some sample questions:

  • How do you understand the steps you need to take in finding substance abuse treatment services for your family member who has an intellectual disability abusing alcohol?
  • How do you understand the experience of finding substance abuse treatment services?

If you would like to participate, please email me at or by phone at 973-513-1583 so that we can set a day and time that suits you. I will do my best to accommodate your time availability.

[Walden University International Review Board (IRB) approved]

Parent IEP Perceptions

Doctoral students at the University of Oklahoma are seeking parent participants for a new study. The purpose of this study is to understand the perceptions of parents on IEP dynamics and meeting experiences. This survey is designed for parents of a child with a disability AND an IEP.

This a two-part study: 

Online survey about meeting experiences and parent-teacher dynamics (10-15 minutes). Link to Survey:

Optional: phone/video interview at time of your convenience. Researcher will ask questions about your experiences in IEP meetings (30min-1hour).

The Sibling Leadership Network is conducting a survey about the experiences of siblings of individuals with disabilities. Click the link below for additional information about the survey. You can also click here to take the survey.

Depression and Sleep Disorders in Adults with Down Syndrome

Kennedy Krieger Institute is recruiting DS subject’s 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 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 visits 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 

Jennifer Johnson (443) 923-7995 or by email at