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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.


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.


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: https://survey.az1.qualtrics.com/jfe/form/SV_08wZJEhfnY10ZEN

Or contact:
Christina Marsack, Assistant Professor, Eastern Michigan University
cmarsack@emich.edu

7/11/19


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. 


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 reuven720@gmail.com. Or call at 201-724-4741.

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

7/11/2019


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.


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.


RESEARCH STUDY: The role of dopaminergic tone on motor learning in children with cerebral palsy: a pilot study

The purpose of the study is to examine the relationship between dopaminergic function and different phases and types of motor learning in children with cerebral palsy. This research is of importance as it would enable the design and implementation of personalized rehab programs for children with cerebral palsy. 

The Motor Behavior Laboratory of Rutgers University is looking for:

  • 20 Children with Cerebral Palsy
  • 20 Children without any Disorder
  • Male and Female
  •  Between 9-18 years old

A child should NOT volunteer if they....

• Have an arm injury that affects use of arm/hand
• Have intense pain in the arm despite treatment
• Have cognitive impairments that could prevent them from understanding directions
• Are unable to communicate verbally
• Do not speak English

This study involves:
• 2 Sessions in the laboratory located at 65 Bergen Street, Newark
• 1 blood draw

There will be $100 compensation at the completion of the study

INTERESTED? Want to Learn more?
Please CONTACT the principal investigator, Jean-Francois Daneault, PhD: 973-972-8482 or jf.daneault@rutgers.edu

7/11/2019


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)

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