Clincal Study Connection UPDATED Feb 2026

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.

Within two business days after completing this questionnaire, the HD Genetics team (B.J. Viau) will contact you by text or email to setup a call.

Your submission of this intake questionnaire provides consent to contact via text message, email, and/or phone call from the HD Genetics team, using the contact information you provide within.

This questionnaire should take you ~3-4 minutes to complete.
General Important Information
MyselfA loved one
If for a loved one, please share any details....
First name (your real name or a pseudonym is fine)*
Year of Birth*
What year were you born?
MaleFemaleTransgenderNonbinaryRather not sayOther
He/Him/HisShe/Her/HersThey/Them/TheirsOther
Cell phone number (required)*
Format: (000) 000-0000.
Verify cell phone number
Format: (000) 000-0000.
YesNo
Email (required)*
example@example.com
Verify email by entering again
example@example.com
State you live in*
City you live in
Gene negative CAG repeat 26 or lowerCAG repeat 27-35CAG repeat 36-39CAG repeat 40 or moreI have not had genetic testing for HDI am not sure
If you've undergone genetic testing, please list your specific CAG repeat. This is important to know, but can also be shared over the phone.
Yes, I have been diagnosed with symptoms by an HD doctorYes, but I have never been diagnosed by an HD doctor.I'm not sureI don't think soNo
YesNoI am not sureOther
Have you ever participated in a clinical trial where you received a medication/treatment? If yes, please share which study, the company, or best description that you can.
YesNoMaybe / I am not sure
YesNoMaybe / I am not sure
YesNoMaybe / I am not sure
Is there a specific clinical study/trial that you are trying to enroll in? Please share which one or describe it the best you can.
Enroll-HDPREDICT-HD or PREVENT-HDCOHORTKIDS-HDHD-CLARITYNoneOther
If you have participated in Enroll-HD, please list the location where you go for the study?
YesNoI'm not sureNot relevant
YesNoI mightI'm not sure
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?*

1

2

3

4

5

6

7

8

9

10

1 is Not at all certain, 10 is Absolutely certain
Other Information (not required, but you're welcome to fill these out)
Some high schoolHigh schoolAssociate's degreeBachelor's degreeMaster's degreePhD or higherTrade schoolPrefer not to say
Full-time employeePart-time employeeCurrently unemployedSelf-employedStudentVolunteerOther
Please describe your occupation:
Single / No partnerMarriedEngagedIn a relationshipDivorcedWidowed
YesNo
If yes, how many?
HD GeneticsAn HDSA Center of ExcellenceLocal Neurologist or primary care doctorOther
Within the past 1 year1-5 years ago5-10 years agoMore than 10 years ago
About how old were you when you learned you were at-risk for HD?
How did you learn about HD in your family?
Please use this field if you would like to describe anything about your genetic testing experience....
YesNo
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

2

3

4

5

1 is Not at all aware, 5 is Very aware
Please share what you know and don’t know about clinical / observational studies for HD?
HD Genetics' clinical study overall process and procedureClincal Study Time CommitmentCompensation / Reimbursement for participatingParticipating anonymouslyAvailable Trial OpportunitiesClinical trial locationsOther
NoneStarting a new jobStarting a new school or programMoving to a new areaGetting marriedSeparating from a partnerHaving a baby or adoptionFamily vacation or reunionOther
Please share any specific questions you'd like our team to address?
How can HD Genetics make this the best possible experience for you?
HDSA (Huntington's Disesae Society of America)HDYO (Huntington's Disease Youth Organization)Help4HDHD ReachHD BuzzHelpCureHDHSC (Huntington Society of Canada)HSG (Huntington's Study Group)None
YesNoWhat's an HDSA Center of Excellence?
YesNo
Friend/FamilyFacebook/InstagramOther social mediaYouTubeGoogle/Online search engineAt an HD event (support group, education day or conference)From a healthcare providerAdvocacy Organization (HDSA, Help4HD, HDYO, HD Reach etc.)Other
What intrigued you to reach out to HD Genetics?
Yes, I authorize HD Genetics to contact me.
Yes, I understand and agree to telehealth services from HD Genetics.
Yes, I understand.
I understand that HD Genetics takes the safety and security of information that I share very seriously, and that HD Genetics will do their best to safeguard my personal information, including using HIPAA-compliant software & technology to manage & store that information. However, I do understand that no system is perfect or impenetrable, and that there is always a possibility that information that I share may be exposed in the event of a security breach. I can access full details of HD Genetics’ privacy practices at all times by visiting www.HDGenetics.com/privacy*

Yes, I understand
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.
I agree and continue
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.
Should be Empty:

General Important Information

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