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IMPACT FOR DCD - USA

RESEARCH TEAM

Priscila Tamplain, Ph.D., University of Texas at Arlington
Sharon Cermak, EdD, OTR/L, FAOTA, University of Southern California
Melissa Licari, Ph.D., Telethon Kids Institute (Australia)
Jacqueline Williams, Ph.D., Victoria University (Australia)

IMPORTANT INFORMATION ABOUT THIS RESEARCH PROJECT
The aim of this study is to raise awareness of DCD in the USA. It will summarize the impact of persistent movement-related difficulties known as DCD. This study has been done in Australia and our goal is to replicate the study in the US to explore the impact of movement difficulties that may be specific to this country. You can choose to participate in this research study if you have children ages 5-18 years who has persistent movement difficulties not associated with another movement-related condition (e.g., cerebral palsy, muscular dystrophy).

This study has been reviewed and approved by an Institutional Review Board (IRB).  An IRB is an ethics committee that reviews research with the goal of protecting the rights and welfare of human research subjects.  Your most important right as a human subject is the informed consent. You should take your time to consider the information provided on this form by the research team, and ask any questions if you have hesitation or do not fully understand before participating.

TIME COMMITMENT
Participation will require approximately 30 minutes.

RESEARCH PROCEDURES
If you agree to participate you can click on the box and continue with the survey. You will answer questions pertaining to diagnosis, activity & participation, education, therapy, and social & emotional impact. 

POSSIBLE BENEFITS
The research is meant to increase awareness, improve support services to families, and if possible, to bring about any needed change to our community's approach to DCD.

POSSIBLE RISKS/DISCOMFORTS
This research study is not expected to pose any additional risks beyond what you would normally experience in your regular everyday life.  However, if you are uncomfortable with any aspect of this research, please inform the research team.

COMPENSATION
No compensation will be provided.

ALTERNATIVE OPTIONS
There are no alternative options offered for this study. 

CONFIDENTIALITY
The research team is committed to protecting your rights and privacy as a research subject. All paper and electronic data collected from this study will be stored in a secure location on the UTA campus and/or a secure UTA server for at least three (3) years after the end of this research. The results of this study may be published and/or presented without disclosing your identity as a participant. The data collected concerning you in this study may be used for future research studies that are not described in this consent form.  If that occurs, an IRB would first evaluate the use of any information that is identifiable to you, and confidentiality protection would be maintained.  While absolute confidentiality cannot be guaranteed, the research team will make every effort to protect the confidentiality of your records as described here and to the extent permitted by law. In addition to the research team, the following entities may have access to your records, but only on a need-to-know basis: the U.S. Department of Health and Human Services and the FDA (federal regulating agencies), the reviewing IRB, and sponsors of the study.

CONTACT FOR QUESTIONS
Questions about this research study or reports regarding any injuries or other unforeseen problems shall be directed to Dr. Priscila Tamplain (priscila.tamplain@uta.edu).  Any questions you may have concerning your rights as a research subject or complaints about the research itself should be directed to the Office of Research Administration(Regulatory Services at 817-272-3723 or regulatoryservices@uta.edu). 

CONSENT
By answering the questions, you are confirming that you understand the study’s purpose, procedures, potential risks, and your rights as a research subject. By agreeing to participate, you are not waiving any of your legal rights. You can refuse to participate or discontinue participation at any time, with no penalty or loss of benefits that you would ordinarily have. Only continue if you are at least 18 years of age and voluntarily agree to participate in this study. 
 
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