Screen Reader Mode Icon
Thank you for your time today taking this 10-minute survey.  The purpose of this survey was to gain insights from those who are at-risk for Huntington’s Disease located in the United States. Your answers will be 100% anonymous meaning nothing will be attached to your name.  Your answers will help provide valuable insights and help support the creation of a new service offering genetic testing and counseling, specifically for Huntington’s Disease (HD). 

Demographics
This first section is simply to collect a little background to help us better understand your answers.  

Question Title

* 1. Do you live in the United States?

Question Title

* 2. State (Please use your states two letter code.....AL, AK, AS, AZ, AR....etc..)

Question Title

* 3. Zip Code

Question Title

* 4. Your Age

Question Title

* 5. How did you hear about this survey?

Question Title

* 6. Which of your parents has or had HD?

Question Title

* 7. At what age have people in your family typically started to show symptoms for HD?

Question Title

* 8. Where do you currently go to get information/education on Huntington’s Disease? Check your top three.

Question Title

* 9. On a scale from 0-100, how knowledgeable do you feel you are about HD genetics and the potential impact on your future life?

0 Never heard of HD 50 Most HD Family Members 100 HD Expert Doctor
Clear
i We adjusted the number you entered based on the slider’s scale.

Question Title

* 10. If someone has              or more CAG repeats, they are told that one day they will develop symptoms for HD?  Choose the best answer.

Question Title

* 11. The HD genetic test result of one person has NO impact on the genetic results of their biological siblings.

Question Title

* 12. List any questions or clarifications that you are hoping to get answered one day in regard to Huntington's disease genetics or genetic testing.

YOUR TESTING DECISION: In this section we hope to understand why you’ve chosen not to test. Testing is a very personal decision and every individual holds their own right to test or not.  We appreciate your willingness to share such personal feelings. If taking this survey brings upon any negative thoughts, feelings or emotions, please do not feel obligated to finish the survey. If at any time you need to speak to a professional healthcare provider, you can utilize HDSA’s no-cost Tele-Health Program found here: https://hdsa.org/find-help/community-social-support/hdsa-telehealth/

Question Title

* 13. Are you at-risk for Huntington’s disease?

Question Title

* 14. Do you currently have any biological children?

Question Title

* 15. How many biological siblings have undergone HD genetic testing?

Question Title

* 16. How many biological siblings do you have who are still at risk for HD?

Question Title

* 17. What are the main reasons you have NOT tested yet for HD?  Select all that apply

Question Title

* 18. When do you plan to get genetically tested for HD?

Question Title

* 19. How much research have you already done with regards to getting an HD genetic test?

Question Title

* 20. "I think about how HD could impact my future                                  ”

Question Title

* 21. Which of the below would influence you to get genetic testing sooner than your current plans.....

Question Title

* 22. If you're willing, provide any context to your answer from the previous question regarding situations that would influence you to get genetic testing sooner....

Question Title

* 23. If genetic testing and counseling were FREE, would you be more inclined to get tested?

Question Title

* 24. How would you prefer to get your genetic testing, counseling and education?

Question Title

* 25. Rank what is most important to you when seeking genetic testing?  1 being MOST important

Testing and clinical trials
For this section when we refer to a new HD medicine, we are referring to new medicines not yet available outside of clinical trials that we hope will stop, slow or reverse the progression of HD symptoms. For a list of HD clinical trials, visit: https://hdsa.org/hd-research/therapies-in-pipeline/

Question Title

* 26. On a scale of 1-10, how likely would you be to get the genetic test today, if you could immediately join a clinical trial for a new medicine? 
10 being I would get tested immediately.

0 Zero Impact on My Decision 5 I'm not Sure 10 Sign me up NOW!
Clear
i We adjusted the number you entered based on the slider’s scale.

Question Title

* 27. If a new medicine was available to take when HD symptoms began, would you get the genetic test sooner than you're currently planning?

Question Title

* 28. If a new medicine was available to take before symptoms ever began, would you get the genetic test sooner than you're currently planning?

Question Title

* 29. Please list any unanswered questions you have about genetic testing as they relate to new medicines...

Genetic Testing
In this section we hope to learn a bit more about your preferences in how you may want to get genetic testing in the future.  You could encounter many operational dynamics when deciding to undergo genetic testing.  This section will help us understand everyone’s preferences when it comes to the future process so we can work to streamline the testing experience.

Question Title

* 30. On a scale of 0-10, how comfortable are you providing your saliva through a kit that arrives to your home in the mail?

0 Not a chance 5 I'm Undecided 10 Extremely Comfortable
Clear
i We adjusted the number you entered based on the slider’s scale.

Question Title

* 31. On a scale of 0-10, how comfortable are you providing a blood sample at a doctor’s office?

0 Not a Chance 5 I'm Undecided 10 Extremely Comfortable
Clear
i We adjusted the number you entered based on the slider’s scale.

Question Title

* 32. On a scale of 0-10, how comfortable are you providing a blood sample while in your home if a professional healthcare worker came into your home to draw it?

0 Not a Chance 5 I'm Undecided 10 Extremely Comfortable
Clear
i We adjusted the number you entered based on the slider’s scale.

Question Title

* 33. On a scale of 0-10, how comfortable would you be doing genetic testing counseling/education sessions through tele-medicine with HD experts?  (Tele-medicine is done virtually through the phone or computer on a call or FaceTime)

0 Not a Chance 5 I'm Undecided 10 Extremely Comfortable
Clear
i We adjusted the number you entered based on the slider’s scale.

Question Title

* 34. On a scale of 0-10, how comfortable would you be doing genetic testing counseling/education sessions in-person at an HD Center with HD experts?

0 Not a Chance 5 I'm Undecided 10 Extremely Comfortable
Clear
i We adjusted the number you entered based on the slider’s scale.

Question Title

* 35. On a scale of 0-10, how comfortable would you be doing genetic testing counseling/education sessions in-person at a family practice doctor’s clinic who are NOT HD experts?

0 Not a Chance 5 I'm Undecided 10 Extremely Comfortable
Clear
i We adjusted the number you entered based on the slider’s scale.

Question Title

* 36. How much are you able/willing to pay out of your own pocket for genetic testing/counseling services?  Answer with a dollar value like, $          .

Question Title

* 37. What’s your best estimate as to how much HD genetic testing and counseling services cost?  Answer with a dollar value like, $           .

Question Title

* 38. How long would you like the genetic testing process to be?  From the time you call to setup your initial visit, until the time you get your results...

1 week 6 weeks (1.5 months) 12 weeks (3 months)
Clear
i We adjusted the number you entered based on the slider’s scale.

Question Title

* 39. How do you plan to pay for your genetic testing?

Question Title

* 40. How important is testing anonymously to you? (anonymous meaning your name is not tied to your test results so your insurance, your employer and your family will not know you tested).

Question Title

* 41. If you test positive for HD (meaning you will one day get HD), what's the one thing you hope counseling and education will provide you after the test?

Question Title

* 42. If you test negative for HD (meaning you will NOT get HD), is there anything you hope genetic counseling/education provide you for your future?

Question Title

* 43. On a scale of 1-10, how likely are you to go through genetic testing with the following format:
  • 1 in-person visit
  • Meet with a general doctor who does NOT know about HD
  • 6-week turnaround time from your first call to setup appointment to finding out your results
  • Blood draw in a clinic
  • $350 cost
  • Not anonymous

0 No Way! 5 I'm Not Sure 10 YES I Want This!
Clear
i We adjusted the number you entered based on the slider’s scale.

Question Title

* 44. On a scale of 1-10, how likely are you to go through genetic testing with the following format:
  • 2-3 in-person visits.  You'd have to drive to your nearest HD Clinic (only located in most major cities)
  • Meet with HD Experts; Genetic Counselor, Social Worker & Neurologist
  • 1-4 month turnaround time from your first contact to setup appointment to finding out your results
  • Blood draw in the clinic
  • $750 cost
  • 100% anonymous

0 No Way! 5 I'm Not Sure 10 YES I Want This!
Clear
i We adjusted the number you entered based on the slider’s scale.

Question Title

* 45. On a scale of 1-10, how likely are you to go through genetic testing with the following format:
  • 2-3 virtual visits over the phone or FaceTime
  • Meet with HD Expert; Genetic Counselor
  • 3-week turnaround time from your first call to setup appointment to finding out your results
  • Mail-in Saliva Kit
  • $750 cost
  • 100% anonymous 

0 No Way! 5 I'm Not Sure 10 YES I Want This!
Clear
i We adjusted the number you entered based on the slider’s scale.

Question Title

* 46. If you tested positive for HD (meaning you would one day get HD), would you pay a monthly fee to have unlimited virtual access (phone and email) to a team of HD experts; social workers, genetic counselors & nurses?  They could answer any of your HD questions, connect you to the best resources and alert you about clinical studies you qualify for, but they would not be able to prescribe medicines.

Question Title

* 47. How much would you consider paying per month for; unlimited virtual access (phone and email) to a team of HD experts; social workers, genetic counselors & nurses? They could answer any of your HD questions, connect you to the best resources and alert you about clinical studies you qualify for, but they would not be able to prescribe medicines.

$0 monthly $25 monthly $50+ monthly
Clear
i We adjusted the number you entered based on the slider’s scale.

Question Title

* 48. Share any questions, comments or thoughts about the genetic testing process….

Pharmaceutical Company Partners Section
The pharmaceutical industry is made up of companies who have invested time, money and expertise in hopes to make new medicines available for the Huntington’s Disease community.  There are many medicines currently in clinical trials, and many more soon to be in trials, in hopes to gain evidence and approval that they work to slow, stop or delay the symptoms of HD.  For a list of pharmaceutical companies with HD programs, please visit: https://hdsa.org/hd-research/therapies-in-pipeline/ .  This section seeks to gather your opinions about these companies.

Question Title

* 49. If pharmaceutical companies sponsored a program making genetic testing/counseling more affordable for you, on a scale of 1-10, how comfortable would you be using this program to get genetic testing? (The pharmaceutical sponsors would NOT get any of your personal details and the testing/counseling would be best-in-class).

0 Not At All Comfortable 5 I'm Not Sure 10 Very Comfortable
Clear
i We adjusted the number you entered based on the slider’s scale.

Question Title

* 50. Would you have a more favorable impression of the pharmaceutical companies who helped make genetic testing and counseling more financially affordable?

Question Title

* 51. Would you be willing to have your information shared with the pharmaceutical companies who support the genetic testing program?  NONE of the info would be linked backed to your name, address or contact details.  The companies would use your info for research purposes only.

Question Title

* 52. What would you like to share with or ask the pharmaceutical companies who are considering supporting a new program to offer more affordable genetic testing and counseling for the HD community?

FINAL COMMENTS As mentioned previously, if you feel you need to connect with a healthcare professional after taking this survey, please visit https://hdsa.org/find-help/community-social-support/hdsa-telehealth/ which is a no-cost service offering support groups and other tele-health options specifically for Huntington's disease.

Question Title

* 53. The purpose of this survey was to gain insight from those who are at-risk for Huntington’s Disease located in the United States.  The Huntington’s Disease Genetics Company (HD Gene Co) is a new company being created by a group of HD family advocates to bring a new genetic testing and counseling option to those who are at-risk in the USA. The HD Gene Co team hopes to use your answers to solidify the company’s plans and services and make available by Fall 2021. If you’d like more info on these plans, please visit www.HDgeneCo.com or find HD Gene Co on Facebook, Twitter, and Instagram. HD Gene CO is not currently operational.  Please share this survey with any of your friends or family members who are at-risk for HD and living in the USA.  THANK YOU for your time, insights and support!!  -HD Gene Co Team

0 of 53 answered
 

T