HD Genetics Clinical Study Connection

This is the HD Genetics' client intake questionnaire for individuals wanting to learn more about HD RESEARCH STUDIES.

If you are looking to get genetic testing/counseling, please click here for a different survey.

This survey will help HD Genetics setup learn more your qualifications for clinical trials 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.

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.

Who are you filling this out for?

Name & Relationship

Your FirstRelationship to Person You're Filling this out for

For the contact info you will provide below, please indicate whose information you are providing:

For all questions below, please answer on behalf of your loved one.

Name

First NameLast Name

Year of Birth

Gender:

Cell phone number (required)

Please enter a valid phone number.Format: (000) 000-0000.

Verify cell phone number

Please enter a valid phone number.Format: (000) 000-0000.

Do we have permission to send you a text message?

Email (required)

example@example.com

State you live in

City you live in

If you don't live in the USA, please list the country you reside in:

What is your genetic status for HD?

What is your CAG #?

Are you currently seeing a doctor for Huntington's disease?

Do you think you are currently experiencing any of the below symptoms of HD?

On a scale of 1-10, with 1 being "not at all certain" and 10 being "absolutely certain," how certain are you that you want to participate in a study for Huntington's disease?

Have you had any recent changes to your job or day to day duties, because of anything related to HD?

Are you currently taking any of these medicines?

Please list all of the procedures that you would NOT be willing to undergo for research purposes?

Is there a specific clinical study or trial that you are trying to enroll in? Please share which one or describe it the best you can.

Please check if you have ever participated in any of these HD observational studies:

If you have participated in Enroll-HD, please list the clinic location where you participate.

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?

How would you best describe your ability and willingness to travel to clinical study visits? Most clinical studies will require a few in-person visits per year.

Other

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.

What is your current occupation status?

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 get your results?

How did you learn about HD in your family?

Have you previously spoken to any healthcare professionals about clinical study participation for HD?

On a scale of 1-5, with 1 meaning "not at all aware" and 5 meaning "very aware" — How aware are you of the current HD clinical and observational studies available to people in the USA?

1 is Not at all aware, 5 is Very aware

Please list what questions you'd like the HD Genetics team to address on your phone call or via email?

Do you know where your closest HDSA / HD Center of Excellence is located?

How did you hear about HD Genetics? Check all that apply.

What intrigued you to reach out to HD Genetics?

Recap of Call of Communication

Follow Up: What and When

Referred Them to Trial Site

Trial Site Referred to:

Keep them posted on:

HD Genetics Clinical Study Connection

Trial Connection Notes & Follow Up