IRB Project ID #: UNL-00024449
Participant Study Title: Client Perceptions about Swallowing and Ataxia
The purpose of this research is to obtain information from persons with a movement problem called ataxia about their awareness of, symptoms of, and access to resources for managing swallowing disorders. If you are at least 19 years of age, a person with ataxia OR the primary caregiver of a person with ataxia, and able to read and write in English, you may choose to participate in this research.
Participation in this study will require approximately 20-40 minutes. You will be asked to answer a series of questions about your experiences with ataxia, including the diagnostic process, symptoms, and health care resources. Participation will take place online through your own phone, tablet, or computer.
You may benefit from participating in this research by learning more about symptoms of swallowing disorders and possible resources to help with swallowing problems. It is possible that this could help you seek support for such symptoms and avoid complications of untreated swallowing disorders. Society may benefit by helping to guide providers and public health entities in providing more relevant and timely information about swallowing problems to people with ataxia. It may also help guide future research regarding the nature and management of swallowing disorders associated with ataxia.
Reasonable steps will be taken to protect the privacy and the anonymity of your study data; however, in some circumstances we cannot guarantee absolute privacy and/or confidentiality. To minimize risks, no personal identifiers will be collected, and research records will be stored electronically through University approved methods. Records will only be seen by the research team and/or those authorized to view, access, or use the records during and after the study is complete.
If you have questions about this project, you may contact Caitlin Cloud or Angela Dietsch by email at sisclab@unl.edu or by phone at 402.472.3911.
If you have questions about your rights or complaints about the research, contact the UNL Institutional Review Board (IRB) at 402.472.6965 or irb@unl.edu.
You can decide not to be in this research study, or you can withdraw at any time before, during, or after the research begins for any reason. Deciding not to be in this research study or deciding to withdraw will not affect your relationship with the investigator, the University of Nebraska-Lincoln, or any other entity. You will not lose any benefits to which you are entitled.
You are voluntarily making a decision whether or not to participate in this research study. By clicking on the I Agree button below, your consent to participate is implied. If you do not agree to participate, simply close this webpage. You should print or save a copy of this page for your records.
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