Clinical Study Connection UPDATED May 26'

  • This is the HD Genetics' client intake questionnaire for individuals wanting to learn more about HD clinical and observational research studies (not genetic testing). 

    If you are loooking to get genetic testing/counseling, please use our other survey link: https://form.jotform.com/221505745653153

    This survey is intended to help HD Genetics setup a call with you to learn more about clinical trial options and connect you to clinics based on your personal interest. There is no-cost or no obligation to setup a phone call.

    All of the information you provide is securely stored using HIPAA-compliant software technology. You are welcome to use a fake name, but we'll need proper contact information to reach you.

    When you submit this form, you'll be provided a link to schedule a call with our team. If you don't schedule a call, our team will reach out to find a time.

     

  • General Important Information

  • Who are you filling this form out for?*
  • Gender identity
  • Personal pronouns
  • Format: (000) 000-0000.
  • Format: (000) 000-0000.
  • Do we have permission to send you a text message?*
  • What is your genetic status for HD?*
  • Do you think you are currently experiencing any symptoms of HD?*
  • Have you had any recent changes to your job or day to day duties, because of anything related to HD?*
  • Are you willing to undergo an MRI?*
  • Are you willing to get a lumbar puncture (also known as a spinal tap)?*
  • Are you willing to have a blood draw?*
  • Please check if you have ever participated in any of these HD observational studies:*
  • Are you pregnant, breast feeding or planning to become pregnant in the next 24 months? Many clinical trials have restrictions about trying to have children while participating in a trial.*
  • Many clinical studies require a support person to join for study visits. Do you have someone in mind who would be willing to support you?*

  • Other Information (not required, but you're welcome to fill these out)

  • What is the highest degree or level of education you have completed?
  • Occupation:
  • Partner/relationship status
  • Do you have any biological children?
  • If you've undergone genetic testing, where did you get tested for HD?*
  • If you're undergone genetic testing for HD, how long ago did you test?
  • Have you previously spoken to any healthcare professionals about clincal study participation for HD?
  • Would you like HD Genetics’ team to highlight any specific topics during your first phone screen? Check all that apply.
  • Please describe any big life events (if any) coming up for you in the next six months. Check all that apply. Use the "other" option to provide more detail, if you feel it would be helpful.
  • Which HD organizations are you familiar with? Check all that apply.
  • Do you know where your closest HDSA / HD Center of Excellence is located?
  • Have you ever been to an annual HDSA Convention?
  • How did you hear about HD Genetics? Check all that apply.

  • The details of your interaction, which may include oral, visual, and electronic communications between you and the HD Genetics team, will NOT become part of your medical records.

    The Information provided by HD Genetics is not intended to replace the medical advice and recommendations of your existing healthcare team. If you have concerns about a current health condition, you should consult your local healthcare provider.

  • Within two business days after submitting this questionnaire, the HD Genetics team will contact you to confirm your interest in learning more about clinical studies and schedule your first session with HD Genetics’ team. There is no cost for this service.

    By providing a telephone number and submitting this form you are consenting to be contacted by SMS text message. Message & data rates may apply. You can reply STOP to opt-out of further messaging.

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