Fragile X Clinic Rush U

You are being invited to take part in this research study. Before you decide, it is important for you to understand why the research is being done and what it will involve. Please take the time to read the information in this form carefully. If there is anything that you do not understand, or you would like more information, please contact the study investigator.

You do not have to take part in this study. You are free to withdraw from this study at any time you choose without giving a reason. People who take part in research are called “subjects”.

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Why are you being invited to participate in this study?

You are being asked to take part in this study because you are a parent of a child who receives speech-language treatment.

What is the purpose of this study?

The purpose of this study is to explore parent perceptions of clinician-client relationships in speech-language treatment for children. We believe that the development of collaborative working relationships between speech-language pathologists, children receiving treatment and their parents are important aspects of the treatment process. We are working to develop tools to accurately measure the strength of these relationships.

How many study subjects are expected to take part in the study?

We expect up to 200 parents to complete this survey. All subjects will participate online.

What will you be asked to do?

If you choose to participate, you will be asked to complete an electronic survey. We expect the survey to take approximately 10-15 minutes to complete.

What are the possible risks of the study? Are there benefits to taking part in the study?

There are no identifiable risks or benefits to your participating in this survey.

What other options are there?

The only alternative to participating in this study is not to participate.

What about confidentiality of your information?

Records of participation in this research study will be maintained and kept confidential as required by law. Your participation in this study is anonymous; we will not record who completes the study, save any personal identifying information about you or attempt to link the general demographic questions included in the survey to specific individuals. Your identity will not be revealed on any report, publication or at scientific meetings.

The Rush Institutional Review Board (IRB) will have access to the anonymous data for this research study. The IRB is a special committee that reviews new and ongoing human research studies to check that the rules and regulations are followed regarding the protection of the rights and welfare of human subjects.

What are the costs of your participation in this study?

There are no costs to participating in this study.

What financial disclosure(s) apply to this study?

Rush University Medical Center is being paid by the American Speech-Language Hearing Association to conduct this research.

Will you be compensated or paid?

No.

What happens if you experience a research-related injury?

Rush University Medical Center has no program for financial compensation or other forms of compensation for injuries which you may incur as a result of participation in this study. The American Speech-Language-Hearing Foundation has no program for financial compensation or other forms of compensation for injuries which you may incur as a result of participation in this study.

Whom do you call if you have questions or problems?

Questions are encouraged. If there are any questions about this research study or if you experience a research related injury, please contact:

Kerry Danahy Ebert
312-563-6034
Kerry_ebert@rush.edu

Questions about the rights of research subjects may be addressed to the Rush Research & Clinical Trials Administration Office at 1-800-876-0772.

Investigator: Kerry Danahy Ebert, PhD, CCC-SLP
Contact Information: 1016D Armour Academic Center, Rush University, 600 S. Paulina St., Chicago, IL 60612; 312-563-6034
Title of Study: Parent Perspectives on Rapport in Speech-Language Treatment for Children
Sponsor: American Speech-Language Hearing Foundation

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