HD Predictive Testing Survey |
You are invited to participate in a research study conducted by Isaac Elysee, in partial fulfillment of the curriculum for the University of Pennsylvania Master of Science in Genetic Counseling Program in Philadelphia, PA. The goal of this study is to determine factors that are important to the decision about predictive genetic testing for HD for at-risk individuals and their care partners/relatives. We are also examining the involvement of care partners in the decision-making process. In this study, a "care partner" refers to someone with a close relationship to an individual with HD or at an increased risk to develop HD.
If you are (1) someone who has considered (or is considering) having HD genetic testing, or (2) a care partner or relative (significant other, family member, friend, etc.) of someone who has considered (or is considering) having HD genetic testing, you may participate in this survey. Whether you or your care partner/relative decided to have HD testing, decided not to have HD testing, or are undecided about testing, you may participate in this study.
If you know others who fit the study criteria and would be interested in this study, please send them the link to the survey.
It should take no more than 20 minutes to complete the survey. You are free to end your participation at any time by exiting the browser before submitting the survey.
At the end of the survey, you will be asked if you would be willing to be contacted for a 15-20 minute audio-only interview via Zoom in the future regarding decision-making with a care partner. If you are willing, please provide your email address and/or phone number. These will be stored and encrypted within the RedCap system only for the duration of the study. No other potentially identifying information will be collected. There is no financial compensation for taking this survey. However, individuals who submit their phone number and/or email address for the interview and complete the interview will be placed in a random drawing for an Amazon electronic gift card worth $25 USD.
Taking part in this research study is completely voluntary. If you do not wish to participate in this study, do not continue beyond this point. If you wish to quit at any time, please close the survey window. If you wish to have your response, phone number, and/or email address deleted from study records later on, please contact Isaac Elysee (Isaac.Elysee@pennmedicine.upenn.edu) or Tanya Bardakjian, MS, CGC (Tanya.bardakjian@uphs.upenn.edu).
If you would like to proceed to the survey at this time, please continue on by choosing an option below and clicking "Next Page". Otherwise, please close the browser window.