If the target child is not an adult in their country and will be assenting themselves but can not provide informed consent and the the parents will be providing informed consent, please fill out this form. If not, please write N/A in the signature space but still put the date.
(GUARDIAN and/or) PARENTAL PERMISSION FORM
Protocol Title: Prevalence of Hand Discomfort in Developmental Dysgraphia
Principal Researcher: Julian M. David-Drori, MS, EMT, MRPNIONY@gmail.com, 718-569-0935
INTRODUCTION Your child is invited to participate in this research study called “Prevalence of Hand Discomfort in Developmental Dysgraphia.” Your child may qualify to take part in this research study because because your child has a previous professional diagnosis of Developmental Dysgraphia also known as Specific Learning Disability in Written Expression, and are between the ages of 7 and 18. Approximately 100+ children will participate in this study and it will take 1 hour or less of your’s and your child’s time to complete.
WHY IS THIS STUDY BEING DONE? This study is being done because there is exceedingly little research on developmental dysgraphia, specifically on the pain that can be associated with it.
WHAT WILL MY CHILD BE ASKED TO DO IF I AGREE THAT MY CHILD CAN TAKE PART IN THIS STUDY? If you decide to allow your child to participate in this study, you will first complete a survey following this consent form asking for pieces of demographic information. Then your child will complete a survey asking specific questions about their experiences with Developmental Dysgraphia. All procedures will take place in this google form.
WHAT POSSIBLE RISKS OR DISCOMFORTS CAN MY CHILD EXPECT FROM TAKING PART IN THIS STUDY? This is a minimal risk study, which means the harms or discomforts that your child may experience are not greater than you would ordinarily encounter in daily life while taking routine physical or psychological examinations or tests. However, there are some risks to consider. They might feel embarrassed to discuss problems that you experienced. They do not have to answer any questions or share anything you do not want to talk about. They can stop participating in the study at any time without penalty. Your information will be kept confidential.
The primary researcher is taking precautions to keep your information confidential and prevent anyone from discovering or guessing your identity, such as using a pseudonym (or de-identified code) instead of your name and keeping all information on a password protected drive. Please note, no names, IP addresses and/or names will be collected.
WHAT POSSIBLE BENEFITS CAN MY CHILD EXPECT FROM TAKING PART IN THIS STUDY? There is no direct benefit to your child for participating in this study. Participation may benefit the field of Developmental Dysgraphia research by expanding the knowledge base and possibly, eventually, leading to more specific academic accommodations for Developmental Dysgraphia.
WILL MY CHILD BE PAID FOR BEING IN THIS STUDY? Your child will not be paid to participate There are no costs to you for your child’s participation in this study.
WHEN IS THE STUDY OVER? CAN MY CHILD LEAVE THE STUDY BEFORE IT ENDS? The study is over when your child has completed the survey. However the child can leave any time.
PROTECTION OF YOUR CHILD’S CONFIDENTIALITY: The primary researcher will keep all written materials locked in a desk drawer in a locked office. Any electronic or digital information (including audio (and video) recordings) will be stored on a computer that is password protected. There will be no record matching your real name with your pseudonym. Regulations require that data with children be kept for five years and three years for adults.
For quality assurance, the study team, the study sponsor (grant agency), and/or members of the Neurobehavioral Institute of New York Institutional Review Board (IRB) may review the data collected from you as part of this study. Otherwise, all information obtained from your participation in this study will be held strictly confidential and will be disclosed only with your permission or as required by U.S. or State law.
HOW WILL THE RESULTS BE USED? The results of this study will be published in journals and presented at academic conferences. Your identity will be removed from any data you provide before publication or use for educational purposes. Your name or any identifying information about you will not be published. This study is being conducted as part of the dissertation of the primary researcher.
WHO CAN ANSWER MY QUESTIONS ABOUT THIS STUDY?
If you have any questions about taking part in this research study, you should contact the primary researcher, Julian M. David-Drori, MS, EMT, MRPNIONY@gmail.com, 718-569-0935.
If you have questions or concerns about your rights as a research subject, you should contact the Institutional Review Board (IRB) (the human research ethics committee) at 347-808-9400 The IRB is the committee that oversees human research protection for Neurobehavioral Institute of New York
(The Participant’s Rights section is not a separate document from the parental permission form. It is all one document.)
PARTICIPANT’S RIGHTS
• I have read the (Guardian) Parental Permission Form and have been offered the opportunity to discuss the form with the researcher.
• I have had ample opportunity to ask questions about the purposes, procedures, risks and benefits regarding this research study.
• I understand that my child’s participation is voluntary. I may refuse to allow my child to participate or withdraw participation at any time without penalty. I understand that my child may refuse to participate without penalty.
• The researcher may withdraw my child from the research at their professional discretion.
• If, during the course of the study, significant new information that has been developed becomes available which may relate to my willingness to allow my child to continue participation, the researcher will provide this information to me.
• Any information derived from the research study that personally identifies me or my child will not be voluntarily released or disclosed without my separate consent, except as specifically required by law.
• Identifiers may be removed from the data. De-identified data may be used for future research studies, or distributed to another researcher for future research without additional informed consent (or permission) from you (the guardian, parent, or the research participant’s representative) or your child (the research participant).
• I should receive a copy of this (Guardian) Parental Permission Form document.
Please photograph or copy the above consent document for your records.
