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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.


As part of New Jersey’s Title V Maternal and Child Health Block Grant (MCHBG), the NJ Department of Health is looking for input from families and people who provide services to families across the state. The survey link is: https://www.surveymonkey.com/r/VD95DZT. All responses are due by February 29th. If you have any questions please feel free to contact me or my secretary Josette Kamara at josette.kamara@doh.nj.gov.


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


The Strengths and Challenges of Growing Up With a Sibling with Developmental Disabilities

IRB Notice

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 kagentry@illinois.edu. 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.


2019 Dental Needs Survey for Parents of Children/Youth with Special Health Care Needs
The following is a survey to help the New Jersey Academy of Pediatrics understand the dental services provided to and improve access to dental care for children/youth with special health care needs in New Jersey.

2019 Encuesta de Necesidades Dentales Para Padres de Niños con Necesidades Especiales
La siguiente es una encuesta para ayudar a la Academia de Pediatría de New Jersey a entender los servicios dentales que se les proporcionan a los niños y jóvenes con necesidades especiales y mejorar el acceso en la  atención dental ofrecida.

Click to Participate in English | Spanish


Statewide Sexual Violence Survivor Survey

If you or your loved one with an intellectual and developmental disability live in New Jersey and identify as a survivor of sexual violence, you are invited to complete a brief survey to help us answer the question, “How can New Jersey better meet the needs of sexual violence survivors/victims?” This survey will close on Sunday, October 6, 2019.

Click HERE for more information and/or to participate.


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.


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
pancsofa@tcnj.edu                             petroff@tcnj.edu

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 abhat@udel.edu 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, emailabhat@udel.edu 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 grissingern@kennedykrieger.org


The Mental Health & Developmental Disabilities National Training Center (mhddcenter.org) is conducting a needs assessment about services in the United States for people with intellectual and developmental disabilities (IDDs) who have mental health concerns.

We need responses from each state and territory of the U.S.

Survey Link: http://uaa.co1.qualtrics.com/jfe/form/SV_0HcK53gBB1k8Bvv

Please help us to reach appropriate adults (over age 18 and able to give consent). We are looking for two kinds of responders:

▪ Key informants have an overall view of mental health service systems in a state. Examples are state program administrators, DD Council members, mental health clinicians, as well as other well-informed leaders and advocates in the field. It will take about 15-20 minutes to answer key informant questions.

▪ Experienced individuals know what it is like for someone with an IDD to find and use services for mental health concerns. This can be personal experience or observed experience. It will take about 15 minutes to answer experienced individual questions.

Background Information

The Mental Health & Developmental Disabilities National Training Center (MHDD NTC) wants to increase access to training and information resources that will help improve services for people with intellectual and developmental disabilities (IDDs) and mental health concerns.

This needs assessment survey asks about existing services in your state. The primary purpose is to identify what areas can be improved with training and information resources. Results will be posted on a MHDD NTC website and may be published in a journal.

Your participation in this survey is voluntary. You may stop any time. You do not have to answer any question you don't want to answer. Nothing bad will happen to you if you choose not to answer questions or if you decide not to participate.

Your participation in this survey is confidential. Survey data will not be connected to you as a person. You will not be identified in anything that is written about survey results. Your answers will be combined with other answers from your state and from the nation.

There are no known risks or benefits for you to participate in this survey. You will be contributing to efforts to help improve mental health services for people with IDD.

If you have any questions about this survey, you are welcome to send an email to Karen Ward (karenw@alsakschd.org) or Roxy Lamar (roxy@alaskachd.org). Or call toll-free and ask for one of us (1-800-243-2199). If you have any questions or concerns about your rights as a participant in this needs assessment, please contact the University of Alaska Anchorage Office of Research Integrity and Compliance (1-907-786-1099 or uaa_oric@alaska.edu).

Survey Link: http://uaa.co1.qualtrics.com/jfe/form/SV_0HcK53gBB1k8Bvv

Karen Ward (karenw@alsakschd.org)

Roxy Lamar (roxy@alaskachd.org)


Researchers at Lafayette College are interested in the relationship between access to Augmentative and Alternative Communication devices in childhood and wellbeing in adulthood. If you are at least 18 years old and were primarily nonspeaking for at least a year between the ages of 4-14, they'd love you to participate! You will be asked to answer questions about your access to communication devices in childhood as well as questions about your emotions and beliefs in adulthood. As thanks, you can enter to win a $40 Amazon gift card. Please complete the survey here! https://tinyurl.com/aacresearch


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.
Incentives: 
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 (aadesman@northwell.edu).  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.

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