Wandering Research Study

As many parents know all too well, children with autism spectrum disorder (ASD) may be prone to wandering, or “bolting,” away from adult supervision. Our team of researchers at Cohen Children’s Medical Center of New York believes that when it comes to protecting children with ASD, knowledge is power.

Dear JV Community,

Studies have shown that up to half of all children with autism spectrum disorders (ASD) wander, or “elope”, away from adult supervision. In addition to endangering the safety of the children themselves, wandering may be a major source of stress for their families. The research team at Cohen Children’s Medical Center is conducting a new, 10-week research study to better understand the circumstances that predispose children with ASD to wander, and the impact of wandering-related concerns on their families.

At Jaden’s Voice we want to spread the word about this study and invite any parents who may be interested to participate.  Please see the message from the Wandering Research Team at Northwell Health below:

Dear Parent,

As many parents know all too well, children with autism spectrum disorder (ASD) may be prone to wandering, or “bolting,” away from adult supervision. Our team of researchers at Cohen Children’s Medical Center of New York believes that when it comes to protecting children with ASD, knowledge is power. That’s why we are committed to conducting research that will improve our understanding of wandering and help us learn how to keep kids with ASD safe. But we can’t do it alone. If you are the parent of a child with ASD who wanders, we are asking for your help

We are recruiting parents of children with ASD who wander to participate in a new, online research study – called the Family Experiences with Wandering (“FEW”) Study — that will last for 10 weeks. This study has been approved by the Institutional Review Board at Northwell Health. Once per week, for 10 weeks, parents who participate in this study will be asked to report whether, and how many times, their child wandered during the preceding week. Any time their child wanders, parents will be asked to record important details about the wandering incident – such as the location, time of day, and duration – in a confidential online system. In total, we expect that these questions will take no more than 15 minutes per week to complete.

By providing information about their child’s wandering behavior, parents who choose to participate in this study will be helping to advance the medical community’s understanding of wandering – including why, where, when, and how often it happens – which may lead to the development of more effective prevention strategies in the future. 

If you think that you may be interested in participating, please click the link below to learn more about the study and access the Screening Questionnaire. This questionnaire will allow the research team to determine whether you are eligible to enroll in this study. Please note that completing the Screening Questionnaire does not in any way commit you to enrolling in the study. Before deciding whether you wish to enroll, you will be provided with more information about the study and will be given the opportunity to ask any questions that you may have.

Click the following link to learn more and access the Screening Questionnaire:

https://redcap.northwell.edu/surveys/?s=KTTNAFL77T

Thank you for your time and consideration. We share your commitment to keeping children with ASD safe, and we hope that you will join us in advancing this important research. Please feel free to email the research team at ASDWandering@northwell.edu if you have any questions.

All best,

The Wandering Research Team at Northwell Health


Frequently Asked Questions about the FEW Study

1. What will I be expected to do if I participate in this study? How much time will it take?
As a participant in this study, the only thing you’ll be asked to do is answer questions
online about your child’s wandering behavior, once per week. 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. When you first enroll in the study, you will be asked to
spend about an hour providing background information about yourself and your child.
Then, once per week, for ten weeks, you will be asked to spend a few moments
answering questions about whether, and how many times, your child wandered in the
preceding week. We expect that these questionnaires will take up no more than 15
minutes of your time each week. You will be compensated up to $30, in the form of an
Amazon.com eGift card, for completing these questionnaires as scheduled.
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?
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.
5. 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 has recently wandered 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. 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 visiting the following site: https://tinyurl.com/ASDWandering
7. 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. We encourage you to contact the research team at
ASDWandering@northwell.edu if you have any questions.