Clincal Study Connection

This is the HD Genetics client intake questionnaire for individuals interested in learning more about getting connected to HD clinical and observational studies. This survey is intended to help the HD Genetics team learn more about you or your loved one. We appreciate you providing complete and thorough answers which will help us provide you with a high-quality experience.

HD Genetics is a company that was created by HD family/community members, for the HD community. To learn more about our company and our team visit www.HDGenetics.com/about-us

Our goal with this service is to accelerate clinical study recruitment by educating more people about opportunities. The faster that clinical studies can recruit, the faster we will know if these medicines will work for the broader HD community. We need more people to be ready and willing to participate and we’re grateful for your interest to learn more.

All of the information you provide is securely stored using HIPAA-compliant software technology. Unless we have your permission or are mandated for legal reasons, all personal identifying data will not be shared outside of the HD Genetics team or clinical partners. You are welcome to use a fake name, but we'll need proper contact information to reach you.

Within three business days after completing this questionnaire, the HD Genetics team (B.J. Viau or Wes Solem) will contact you by phone or email to confirm your interest and schedule your educational conversation.

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 ~5-10 minutes to complete. If you aren’t able or willing to complete all the questions, please submit it with your contact information and the HD Genetics team will contact you to obtain any missing information.
General Information
First name (required)*
Year of Birth
What year were you born?
Gender identity

MaleFemaleTransgenderNonbinaryRather not sayOther
Sex assigned at birth

MaleFemaleIntersexOther
Personal pronouns

He/Him/HisShe/Her/HersThey/Them/TheirsOther
Are you of Hispanic, Latino, or Spanish origin? (Cuban, Mexican, Puerto Rican, South or Central American, or other Spanish culture)

YesNo
Regardless of your answer to the prior question, please check one or more of the following groups in which you consider yourself a member:

White/CaucasianBlack/African AmericanAsianAmerican Indian/Alaska NativeNative Hawaiian or Other Pacific IslanderPrefer not to sayOther
What is the highest degree or level of education you have completed?

Some high schoolHigh schoolAssociate's degreeBachelor's degreeMaster's degreePhD or higherTrade schoolPrefer not to say
Phone number (required)*
Verify phone number by entering again*
Is the number that you provided for a cell phone or landline home phone?*

Cell phoneLandline home phone
Can we leave a message on your voicemail if you do not answer?*

YesNo
Email (required)*
example@example.com
Verify email by entering again
example@example.com
Preferred mode of communication. Please check all that apply if no preference.

Phone callPhone textEmail
State you live in*
City you live in
Partner/relationship status

Single / No partnerMarriedEngagedIn a relationshipDivorcedWidowed
Do you have any biological children?

YesNo
If yes, how many?
Are you currently:

Pregnant (you or your partner)Trying to become pregnant (you or your partner)Trying to adoptNone of the above
Occupation:

Full-time employeePart-time employeeCurrently unemployedSelf-employedStudentVolunteerOther
Please describe your occupation:
Family History
Has anyone in your family been clinically diagnosed with HD?

YesNo
If yes, please list who:
(Be as specific as possible about your relationship to relatives who have been diagnosed with HD and whether they are alive or deceased. e.g., my father who is still alive, my father’s sister who is deceased, my father’s mother who is deceased, but my father is still at-risk)
Has your parent had genetic testing for HD?

YesNoI'm not sure
About how old were you when you learned you were at-risk for HD?
How did you learn about HD in your family?
How many biological siblings do you have from your HD affected parent?
Where does your biological family get care for their Huntington’s Disease? Check all that apply

They do not get care for HDAn HDSA Center of ExcellenceLocal neurologistFamily practice doctor / Primary care physicianThey are deceasedOther
On a scale of 1-10 (1 being never and 10 being very open), how openly does your family talk about HD?

1

2

3

4

5

6

7

8

9

10

1 is Never, 10 is Very Open
HD Predictive Testing
Have you undergone genetic testing for HD?

YesNoI am currently undergoing testing
If you've undergone genetic testing for HD, what were your CAG repeat numbers?
If you're undergone genetic testing for HD, how long ago did you test?

Within the past 1 year1-5 years ago5-10 years agoMore than 10 years ago
Where did you get your genetic testing done?

HD GeneticsHDSA/HSG Center of ExcellenceLocal NeurologistLocal Primary Care DoctorOther
What were your motivations &/or reasons for pursuing genetic testing? Check all that apply.

Family planningLifestyle planningParticipate in a clinical trialClarify HD status for childrenReduce uncertaintyHelp prepare for onset of HDOther
Please use this field if you would like to describe anything about your genetic testing experience....
Clinical & Observational Studies
Have you previously spoken to any healthcare professionals about clincal study participation for HD?

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

Enroll-HDPREDICT-HD or PREVENT-HDCOHORTKIDS-HDHD-CLARITYNoneOther
Have you ever participated in a clinical trial where you have received a medication/treatment? If yes, please share which study.
On a scale of 1-5, with 1 meaning "not at all aware" and 5 meaning "very aware" — How are 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?
Roughly how long have you thought about the idea of participation in clinical or observational research for HD?

0-2 months2 months - 1 year1 - 3 years3 - 5 years5+ yearsI haven't thought about it at all
Would you like HD Genetics’ team to highlight any specific topics during your first phone screen? Check all that apply.

HD Genetics' clinical study overall process and procedureClincal Study Time CommitmentCompensation / Reimbursement for participatingParticipating anonymouslyAvailable Trial OpportunitiesClinical trial locationsOther
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
Has anyone in your family participated in an observational or clinical trial for HD?

YesNoI am not sure
Impact of HD Today
In the past year, how often do you think Huntington's disease impact of you?

DailyWeeklyMonthlyVery rarelyNever
Do you think you are currently experiencing any symptoms of HD?

Yes, I have been diagnosed with symptoms by and HD doctorI think soI'm not sureI don't think soNo
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.

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?
Medical History
Please list any medication(s) you are currently taking.
Reason why you are taking this medication:
If yes, please indicate when:

MonthDayYear
Date
HD Genetics Operations
All of HD Genetics' educational conversations are done virtually. Do you consent to this process being conducted through video conferencing or telephone communication?*

YesNo
How comfortable are you using video communication on your preferred electronic device?

Very comfortableComfortableComfortable but not experiencedNot comfortable at allOther
Do you have a preferred day of the week for the initial phone screen? Check all that apply

MondayTuesdayWednesdayThursdayFridayNo preference
Do you have a preferred time of day for your call with the HD Genetics team? Check all that apply

MorningAfternoonEveningNo preference
General HD Info
How can HD Genetics make this the best possible experience for you? We can't guarantee your request, but knowing more about your wishes will help us do our best.
For your information, HD Genetics has a full section on clinical study information that can be found here: https://hdgenetics.com/clinical-trial-education/

Click here to acknowledge
Which HD organizations are you familiar with? Check all that apply.

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)
Do you volunteer with any HD advocacy organizations?

Yes, I do nowYes, I have / I used toNo, but I'd like toNo
Do you know where your closest HDSA / HD Center of Excellence is located?

YesNoWhat's an HDSA Center of Excellence?
Have you ever been to an annual HDSA Convention?

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

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?
I authorize HD Genetics to contact me either by phone or email, using the information I provided.*

Yes, I authorize HD Genetics to contact me.
I would like to receive the HD Genetics quarterly newsletter by email. **We promise we will never spam you with irrelevant emails, and will never share your email address outside of HD Genetics.

Yes, I would like to receive the newsletterNo, I would not like to receive the newsletter
I understand that HD Genetics’ services are provided virtually (i.e., by “telehealth”) rather than in-person, and that I will need to communicate with HD Genetics via laptop, desktop computer, tablet or smartphone capable of video communication in order to receive service.*

Yes, I understand and agree to telehealth services from HD Genetics.
I understand that HD Genetics will never share any personally-identifiable information about me with a third party (i.e., HD Genetics will never share my name, phone #, email, or mailing address) without my explicit permission, unless they are required to do so by law.*

Yes, I understand.
I understand that information about me and details about my HD status could benefit the Huntington’s Disease community, by helping third-parties such as researchers, organizations or companies to better understand the HD community, to potentially develop effective HD treatments, and/or to identify participants for clinical trials or observational trials. The information that HD Genetics would share with these third parties would be de-identified, meaning personally-identifiable information such as my name, phone #, email, and full mailing address will not be shared. Other information may be shared, including my age, CAG repeat numbers, and zip code (in order to identify potential clinical trial site locations).*

Yes, I authorize HD Genetics to share my de-identified information with third parties such as those investigating potential HD treatmentsNo. I refuse to share any of my information with any third-parties listed aboveI'm not sure. Tell me more.
Your information may be compiled with others’ for use in scientific publications and presentations. All information will be de-identified; no person's identity will ever be revealed in such publications, presentations or in any other report.*

Yes, I authorize HD Genetics to use my de-identified information for scientific publications and presentationsNo. I refuse to let HD Genetics use any of my de-identified information for scientific publications and presentationsI'm not sure. Tell me more.
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.

Under certain circumstances, telehealth may not be as appropriate as face-to-face interaction, and your HD Genetics genetic team may refer you to a local Huntington’s disease specialist for follow-up or additional care.

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.
By clicking the "I Agree and Continue" button below, you confirm you have reviewed and agree to the above Patient Consent.*

I agree and continue
Within three 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 Information

Family History

HD Predictive Testing

Clinical & Observational Studies

Impact of HD Today

Medical History

HD Genetics Operations

General HD Info