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A Research Study about Anonymous Genetic Testing for HD


Survey Overview


We are conducting a research study at the University of Texas Health Science Center at Houston about anonymous genetic testing for Huntington’s Disease (HD). Anonymous testing refers to measures that are taken to exclude identifying information about a patient undergoing genetic testing so that their test results are not linked to their legal name or medical record. The purpose of this study is to help better understand the motivations, barriers, and attitudes of pursuing anonymous genetic testing for HD. You are eligible to participate in this study if you are an English-speaking adult (18 years or older) living in the United States who is either:

● At-risk for inheriting HD and have not undergone genetic testing

● Was at-risk for inheriting HD and tested negative

● Was at-risk for inheriting HD and tested positive

If you completed genetic testing for HD, it did not have to be done anonymously in order to be eligible for the study.


The survey consists of questions focusing on the decision to undergo genetic testing and participants’ experiences, knowledge of federal laws, perception of genetic discrimination, family history of HD, and perceived advantages and disadvantages of anonymous genetic testing. This study involves completing an anonymous online survey via REDCap, which will take approximately 10-15 minutes to complete. Participants will be provided with the option to enter a drawing for an Amazon eGift card by entering their email address at the end of the survey.


This study is being performed via a protocol approved by the UTHealth Houston IRB.

If you have any questions, please contact the PI at jordan.steffen@uth.tmc.edu.

Link to survey: https://redcap.uth.tmc.edu/surveys/?s=NXK3WMDK8LF7W984

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