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.
Healthy Relationships Education Questionnaire
The purpose of this research is to explore recommendations for best practices in and barriers to sexuality and healthy relationship curriculums in schools for individuals with IDD.
Why is this research being done?
The purpose of this research is to explore recommendations for best practices in and barriers to sexuality and healthy relationship curriculums in schools for individuals with IDD.
What happens to me and how long will I be in this research?
Participation is completely voluntary and we expect it will take about 5-20 minutes to complete this survey.
Will it cost me money or benefit me to take part in this research?
There is no cost, nor will you receive any compensation for taking part in this research.
What happens to the information collected for this research?
The information collected in this interview will be analyzed and the results presented in a research forum without any identifying information.
Who can answer my questions about this research?
If you have questions about this research you should contact Melissa Rosen from Temple University’s College of Public Health and intern at the Arc of New Jersey at firstname.lastname@example.org
This research is being overseen by an Institutional Review Board (“IRB”). An IRB is a group of people who perform independent review of research studies. You may talk to them at (215) 707-3390 or email@example.com.
If you would like to proceed with the interview, you are agreeing to be a participant in this study.
Study to Examine the Usability and Measurement Properties of the Quality of Life for Children with Autism Spectrum Disorder
Researchers at Old Dominion University in Norfolk, Virginia and the University of South Carolina are conducting a study to examine the usability and measurement properties of the Quality of Life for Children with Autism Spectrum Disorder scale.
This scale was developed to evaluate the quality of life of children with Autism Spectrum Disorder. We are looking for parents or caregivers who:
- (a) have a child with autism spectrum disorder between the ages of 5 years and 10 years and
- (b) have lived with their child with autism spectrum disorder during the past 12 months.
If you or someone you know meets the criteria listed above and is interested in participating in this study, we would like to invite you to complete a short online survey. The survey consists of 11 questions and it takes approximately 5 minutes to complete.
Your participation is completely voluntary, and you are free to withdraw at any time without penalty. There are no anticipated risks for this study. Your participation in this study does not involve any physical, mental, or emotional harm to you. However, as with any online survey, you should be aware that your responses could be viewed by unauthorized persons who attempt to access the computer while you are online. To prevent this, the researchers are using a secure and encrypted website to collect your responses. Data collected will be kept in an electronic password-protected database. Your responses are anonymous and cannot be linked back to you.
To thank you for your time, we would like to offer you the opportunity to enter a raffle for one of five $20 Amazon Gift Cards. To qualify for the gift card, you must complete and submit the entire survey.
If you have questions about this study prior to or after completing the survey, please contact Dr. Laura C. Chezan at firstname.lastname@example.org. If you have questions about your rights as a research participant, please contact Mrs. Danielle Faulkner at email@example.com.
Click here to participate.
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 firstname.lastname@example.org 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
Posted: January 29, 2020
Household Tasks and Parent Expectations for Employment
About the Project: Participants will complete an online questionnaire that should take about 20 minutes. Participants can also choose to take the questionnaire in a paper format that can be mailed to them with a self-addressed stamped return envelope included. We believe the information in this questionnaire will help to identify factors that influence engagement in household tasks and contemplate what schools can do to support parents in involving their adolescent and young adult children in household chores.
Potential Participants: Parents should consider participating in this study if:
(a) They are the legal parent of a transition-aged youth (i.e. between the ages of 14-22) with intellectual disability, and
(b) their child currently lives with them.
If parents meet the criteria for the study and choose to complete the questionnaire, they will have the option to participate in a drawing to receive one of twenty-five $20 Amazon gift cards.
If you have any questions about this study, please contact me at email@example.com. Parents are asked to email me to indicate their interest to receive a link to participate in the study or indicate their preference for a paper format of the questionnaire.
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: firstname.lastname@example.org. 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 email@example.com.
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.
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: https://www.surveymonkey.com/r/L5R65HK
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 http://www.tcnj.edu/~irb/. Your consent will be indicated by your completion of the questionnaire at THE SURVEY WEBSITE.
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 firstname.lastname@example.org 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, email@example.com or call (302) 831-7608.
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.
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 firstname.lastname@example.org
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.
Research Study: Neurodiversity & Participation in the Decision-Making Process
Dear Community members,
We are reaching out to you for help in disseminating the survey among adults with autism/autistic people 18 years and older.
This is the link to the survey: https://osu.az1.qualtrics.com/jfe/form/SV_e2v2GEJz5SoLPcF
The research goal is to measure the characteristics of inclusive participation in the decision-making process. We are asking about past experiences and expectations for the future. This survey far-reaching goal is to help adults with autism to advocate for their needs for inclusive decision-making processes.
There will be a chance to win in a lottery to get a gift card in participation in the online survey. Opportunities to participate in drawings will be provided to all eligible participants. They will be entered into a drawing for one of “1 of 6” $50 gift cards for Target. A total of 6 cards will be distributed.
By law, payments to participants are considered taxable income.
Research Study: Gender identity development in children and adolescents with autism spectrum disorder (ASD)
In order to examine gender identity development in youth with ASD, researchers at Cohen Children's Medical Center in New York have developed a short anonymous questionnaire for parents of children with Autism Spectrum Disorder. Your responses to this questionnaire are instrumental to better understanding how gender identity develops in individuals with Autism Spectrum Disorder and will help us to better assist individuals with ASD who may have gender-related concerns and their families.
You will find a link to a short, completely anonymous and confidential questionnaire below. It takes 10-15 minutes to complete this questionnaire, and completion is voluntary. This research study has been approved by the Institutional Review Board of Northwell Health, and a copy of this approval is available upon request (email@example.com). Please note that we first announced this study two years ago; we are currently collecting additional responses in order to answer some remaining research questions. If you recall previously completing our questionnaire, please do not do so at this time.
We thank you in advance for your participation in our study! Since we are interested in getting as large and representative sample of families as possible for this study, we would be most grateful if you would also forward this e-mail to other parents of children ages 6 – 25 years old with ASD.
Questionnaire link: Click here to complete the questionnaire.
Are you a parent of a child with a developmental disability, autism, and/or a mental health condition?
This online survey takes approximately 10-20 minutes and will contribute to a greater understanding of difficulties families face with the hope of increasing families’ access to mental health services. For quick reference, the link to the English survey is: https://www.surveymonkey.com/r/PQFSMVV. The link to the Spanish survey is: https://es.surveymonkey.com/r/2DXD5TX. The purpose of the study is to compare three groups – caregivers of children with one or more mental health conditions, caregivers of children with mental health conditions and common medical conditions, and caregivers of children with mental health conditions and rare disease. Caregivers include biological parents, adoptive parents, foster parents, step-parents, and kinship homes with children under the age of 18. The survey is nationwide and open to families who live anywhere within the United States. The hope is the survey results will assist mental health providers in tailoring services to meet families’ needs.
Please see flyers in English and Spanish:
Ohio State U - Research on persons with I/DD and mental health challenges
We are doing a research study on mental health treatment for people with intellectual disability (ID). We are doing this study at the Ohio State University. Anyone can be in our study, no matter where you live! In our study, we will meet with a few people with ID on Zoom. We will ask questions about your experiences with mental health therapy. We want to know what it has been like for you!
If you want to learn more, please call Chelsea Cobranchi. Her number is 614-293-9398. Her email is: Chelsea.firstname.lastname@example.org.
Employment of Adults with Autism
We are conducting a study to explore how self-determination affects the employment of adults with autism and the quality of employment. The purpose of this study is to gain a greater understanding of how teaching self-determination and practicing self-determination impacts employment for adults with autism. We are interested in interviewing and surveying adults with autism who meet the following criteria: (1) are employed or ever have been employed and (2) are 18 years or older. To participate, email Adam Berman at email@example.com
Optimizing Information Processing In Infants Who Have A Relative With Language Impairment, Dyslexia, ASD Or ADHD
Participants: 4-18 month olds who have a parent or sibling who has been diagnosed with speech/language disorder, reading disorder, Autism Spectrum Disorder or Attention Deficit/ Hyperactivity Disorder
Does auditory training during the first year of life help infants become more efficient at processing the sounds most important for speech and language development?
Previous research in our lab has shown that infants who are born into a family with a history of language-based learning problems often process sounds differently from children who do not have a relative with such difficulties. Thus, they are at higher risk of having language-learning deficits themselves. Nonetheless, a longitudinal study completed in our lab demonstrated that early auditory training had a positive impact on the accuracy and speed of discrimination of key acoustic cues that are critical for setting up language and ongoing language development. We are studying how this early listening experience might support and enhance acoustic processing for infants in these higher risk categories, thus optimizing later language outcomes.