Wandering Research Study on GPS Tracking Devices

Dear Colleagues,

Our research team in the Division of Developmental and Behavioral Pediatrics at Cohen Children’s Medical Center of New York is committed to safeguarding the well-being of children with autism spectrum disorders (ASD). As many parents and professionals know all too well, concerns about wandering, or “bolting,” can be a major source of stress for the families of children with ASD. That’s why our team is conducting a new, IRB-approved, national study about the impact of wearable electronic tracking devices (ETDs) on children with ASD who wander and their families. Parents who participate in this 10-week study will be provided with an AngelSense Guardian tracking device to use for free for 6 weeks, and will be asked to complete weekly online questionnaires about their experiences with the device. We are writing to humbly ask for your help in spreading the word about our study to families who may be interested in participating. Below, we have pasted a message to families regarding our study. We have also attached documentation of our study’s IRB approval, along with answers to FAQs about the study. If you would be willing to share information about our study with families in your organization, we would be deeply grateful.

Many parents of children with autism spectrum disorders (ASDs) are concerned about their child wandering away from safe supervision. Some parents who are worried about wandering choose to have their child wear an electronic tracking device (ETD) that may help them to find their child if he or she wanders away. Researchers at Cohen Children’s Medical Center of New York are conducting a new study to learn more about how using an ETD affects children with ASDs who wander and their families. If you participate in this study, you will be loaned an AngelSense Guardian tracking device to use for free for 6 weeks. When you first enroll in the study, you will be asked to spend about an hour filling out questionnaires that will provide background information about you and your child. For the rest of the study, you will be asked to fill out a quick, online questionnaire once per week. We expect that each weekly questionnaire will take you less than 15 minutes to complete. Additionally, every time your child wanders, you will be asked to answer a few questions about the wandering incident. To find out if you are eligible to participate in this study, click the link below to complete the Screening Questionnaire, or email the research team at ASDWandering@northwell.edu.

Click here to take the Screening Questionnaire: https://redcap.northwell.edu/surveys/?s=YTEJ7PEFNW

Please do not hesitate to reach out to us if you have any questions about this study. We thank you for any assistance that you may be able to provide.

All best,

The Wandering Research Team at Northwell Health

ASDWandering@northwell.edu

Frequently Asked Questions about the CHILD Study

  1. What will I be expected to do if I participate in this study? How much time will it take?
    If you participate in this study, you will be loaned an AngelSense Guardian tracking device to use for free for 6 weeks. When you first enroll in the study, you will be asked to spend about an hour filling out questionnaires that will provide background information about you and your child. For the rest of the study, you will be asked to fill out a quick, online questionnaire once per week. We expect that each weekly questionnaire will take you less than 15 minutes to complete. Additionally, every time your child wanders, you will be asked to answer a few questions about the wandering incident. All of the questionnaires will be delivered to you via email, so that you may complete them at your convenience and in the comfort of your own home. If you complete these questionnaires on time, you will be compensated $50 in the form of an Amazon.com eGift Card.
  2. Can I see the questionnaires before deciding whether to enroll in the study? Yes. Feel free to contact the research team at ASDWandering@northwell.edu if you would like additional information about any of the online questionnaires.
  3. Why should I participate? What’s in it for me?
    Although you will not benefit directly from participating in this study, you will be helping researchers to understand more about wandering, which could help other families like yours in the future.
  4. Is this study IRB-approved?
  5. Yes. This study has been approved by the Northwell Health Institutional Review Board. Feel free to contact the research team at ASDWandering@northwell.edu if you have any questions or would like to receive documentation of this study’s approval status.
  6. Who is eligible to participate in this study?
    You may be eligible to participate in this study if you meet all of the following criteria:
    1. You are at least 18 years of age, you currently live in the United States, and you are able to read and write fluently in English
    2. You are the parent of a child who has been diagnosed with autism spectrum disorder (ASD) by a professional.
    3. Your child with ASD frequently wanders away from adult supervision.
    4. Your child with ASD is between the ages of 4 and 17.
    5. You have reliable access to the internet, and are willing to spend approximately 15 minutes each week answering questions about your child’s wandering behavior.
    6. You have never used any wearable electronic tracking device for your child with ASD who wanders.
  7. If I am interested in participating, what should I do next? To find out if you are eligible to participate in this study, click the link in the email that you received to complete the Screening Questionnaire. You may also access the Screening Questionnaire by copying and pasting the following link into your browser:
  8. What is the Screening Questionnaire? If I click the link and take the survey, does that mean that I have to enroll in the study? No. The Screening Questionnaire is designed to help the research team determine whether you meet the eligibility criteria to participate in this study. Completing the Screening Questionnaire does not in any way commit you to participating in the study. If you choose to complete the Screening Questionnaire, a member of the research team will contact you to inform you of your eligibility. If you are eligible to participate, you will then be provided with additional information about the study to help you decide whether you would like to enroll.
  9. We encourage you to contact the research team at ASDWandering@northwell.edu if you have any questions.
Updated: March 6, 2019 — 2:27 pm