Intake Questionnaire

Thank you for contacting HD Genetics. This is our client intake questionnaire for individuals interested in learning more about HD Genetics’ Genetic Counseling and Testing Service. This survey is intended to help the HD Genetics team learn more about you. We appreciate you providing complete and thorough answers which will help us provide you with a high-quality experience.

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 and laboratory partner.

Within two business days after completing this questionnaire, the HD Genetics team (Wes Solem, licensed genetic counselor) will contact you by text message (from 704-343-8743) to confirm your interest in genetic counseling and schedule your first session, which is provided at no-cost. You will also receive an email from Wes (wes@hdgenetics.com) with more informationand resources.

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 ~10-15 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.

Thank you for considering HD Genetics to provide you with more information about the option of predictive/pre-symptomatic testing for Huntington's disease.
General Information
First name (required)
Please do not type "Anonymous" here - This is between us! We need to know what to call you :)
Year of Birth
What year were you born?
Date of Birth

MonthDayYear
Date
Month of Birth
What month were you born?
Gender identity

Other
Sex assigned at birth

Other
Personal pronouns

Other
Are you of Hispanic, Latino, or Spanish origin? (Cuban, Mexican, Puerto Rican, South or Central American, or other Spanish culture)
Regardless of your answer to the prior question, please check one or more of the following groups in which you consider yourself a member:

Other
What is the highest degree or level of education you have completed?
Phone number (required)
Format: (000) 000-0000.
Verify phone number by entering again
Format: (000) 000-0000.
Is the number that you provided for a cell phone or landline home phone?
Can we leave a message on your voicemail if you do not answer?
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.
State you live in
City you live in
Partner/relationship status
Do you have any biological children?
If yes, how many?
Age in years of each child:
Are you currently:
Occupation:

Other
Please describe your occupation:
If you were to move forward with genetic testing, would the cost of testing ($500) be a barrier for you?
If you were to move forward with genetic testing, would the cost of testing ($750) be a barrier for you?
Market Research Question ONLY. On June 1, 2023, we will be raising our price from $500 to $750. If you could answer this question honestly, it would be greatly appreciated. Our service price for you is still $500. If you were to move forward with genetic testing, would the cost of testing ($750) be a barrier for you? HD Genetics has a program in place w/ Help4HD to support everyone, regardless of their ability to pay.
Do you currently have any of these insurance products in place? Check all that apply.
Market Research Question ONLY: what type of medical insurance do you currently have? Check all that apply.

Other
Family History
Has anyone in your family been clinically diagnosed with HD?
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?
If your parent or other relative with HD has had genetic testing for HD, would it be possible to get a copy of their laboratory report?
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?
How many full siblings do you have (i.e., you share the same mother and father)?
How many full brothers / How many full sisters?
How many maternal half siblings do you have (i.e., you share the same mother only)?
How many maternal half brothers / How many maternal half sisters?
How many paternal half siblings do you have (i.e., you share the same father only)?
How many paternal half brothers / How many paternal half sisters?
Do you have an identical twin?
If you have biological siblings, have any of them undergone genetic testing for HD?
How many people in your family are currently experiencing symptoms of HD?
Where does your biological family get care for their Huntington’s Disease? Check all that apply

Other
Are you a caregiver of any type for your family members with HD?

Other
Do you help make treatment decisions for anyone in your family regarding their HD symptoms?

Other
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

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9

10

1 is Never, 10 is Very Open
HD Predictive Testing
What are your motivations &/or reasons for pursuing genetic testing? Check all that apply.

Other
Please use this field if you would like to describe your motivations &/or reasons for pursuing genetic testing in more detail.
What factors have influenced your decision to not pursue genetic testing until now?
Have you previously spoken to any healthcare professionals about genetic counseling or testing for HD?
Please share what you know and don’t know about predictive genetic testing for HD?
Roughly how long have you thought about pursuing genetic testing for HD?
In the past year, how often do you think about your genetic risk for HD?
Do you think you are currently experiencing any 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 undergo genetic testing for Huntington's disease

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5

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9

10

1 is Not at all certain, 10 is Absolutely certain
Please describe any big life events (if any) coming up for you in the next three months. Check all that apply. Use the "other" option to provide more detail, if you feel it would be helpful.

Other
Would you like HD Genetics’ genetic counselor to highlight any specific topics during your first counseling session? Check all that apply.

Other
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:
Have you had a blood transfusion in the last 30 days?
If yes, please indicate when:

MonthDayYear
Date
Have you ever had a bone marrow or hematopoietic stem cell transplant using cells from a donor?
If yes, please indicate when:

MonthDayYear
Date
HD Genetics Operations
All of HD Genetics' genetic counseling is done virtually. Do you consent to this process being conducted through video conferencing or telephone communication?
What electronic device will you be using for the genetic counseling video consultations with HD Genetics?

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

Other
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.
Do you have a preferred day of the week for the first counseling session? Check all that apply
Do you have a preferred time of day for the first counseling session? Check all that apply
Support Person

We highly encourage you to have a support person join you throughout your genetic testing process. This can be anyone you feel would be the most supportive of you during this time. Since this is virtual, your support person can either be with you in-person or they can also join virtually, wherever they are located. We recommend that your support person is someone who is not also at risk of HD, so that the process fully focuses on you and your needs, and that you are able to express yourself freely without having to consider others’ feelings in the moment. You can have more than one support person join you for any of the sessions you choose. You also are not required to have a support person with you if you would prefer to not - It is a recommendation, not a requirement.
Support Person Name:
How are you related to the support person?

Other
Do you live with this support person?
How aware is this support person about HD and the HD genetic counseling & genetic testing process?
On a scale of 1-10, with 1 meaning "not at all supportive" and 10 meaning "absolutely supportive" — How supportive is your support person in your desire to seek genetic testing for Huntington's disease?

1

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4

5

6

7

8

9

10

1 is Not at all supportive, 10 is Absolutely supportive
Support Person #2 Name (Only if you want to have a 2nd support person):
How are you related to the support person?

Other
Do you live with this Support Person?
How aware is this support person about HD and the HD genetic counseling & genetic testing process?
General HD Info
For your information, HD Genetics has a full section on genetic testing education that can be found here: https://hdgenetics.com/home-2/genetic-education/
Which non-profit HD patient organizations are you familiar with? Check all that apply.
Do you volunteer with any HD patient advocacy organizations?
Do you know where your closest HDSA Center of Excellence is located?
Have you ever been to an annual HDSA National Convention?
Please check if you have ever participated in any of these HD observational studies:

Other
Has anyone in your family participated in an observational or clinical trial for HD?
How aware are you of the current clinical trials and observational trials available to people in the USA?
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 clinical trials and observational trials available to people in the USA?

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1 is Not at all aware, 5 is Very aware
Are you interested in participating in future clinical or observational trial depending on your genetic results?
HD Genetics has partnered with Rocky Mountain Movement Center, to help educate people about clinical trials, observational studies, and other HD research opportunities. Would you like us to connect you with Liza Heap, Clinical Trial Coordinator, for an educational phone conversation? This is a complimentary service that can be utilized for you or anyone in your family.
Have you seen the recent research breakthrough from uniQure (announced in September 2025) showing that their treatment may help slow the progression of Huntington’s disease?
On a scale of 1 to 5, with 1 meaning "not at all" and 5 meaning "very big influence" — To what degree are recent research developments that report potential success in slowing HD progression playing a role in your decision to get tested?

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1 is Not at all, 5 is Very big influence
How did you hear about HD Genetics? Check all that apply.

Other
If an HD organization or healthcare provider referred you to us, please let us know which organization/provider here
What intrigued you to reach out to HD Genetics?
Our Founder, B.J. Viau, is from an HD family and is an HD patient advocate. Would you be interested in him joining your genetic counseling session if he is available?
I authorize HD Genetics to contact me either by phone or email, using the information I provided.
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.
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.
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.
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).
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.
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
The details of your telehealth interaction, which may include oral, visual, and electronic communications between you and your HD Genetics provider, 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 provider 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 non-genetic 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.
Within two business days after submitting this questionnaire, the HD Genetics team (Wes Solem, licensed genetic counselor) will contact you to confirm your interest in genetic counseling and schedule your first session, which is provided at no-cost.
Client Action Tracker

Intake • GC • Order • Results • Post-Results
Intake
Date Texted & Emailed

MonthDayYear
Date
Intake scheduled?
Intake Date

MonthDayYear
Date
Intake Complete?
Reason No Intake?
Intake Call Duration (Minutes)
Age at Intake Appt
Provider, if Testing:

Other
Financial Assistance Needed?
Amount Patient to Pay
Support System
Why test now?
Family History / Family Notes
Personal History of Depression, Anxiety, Self-Harm; C-SSRS Screen
GC Appt scheduled?
Reason if no GC appt scheduled?

Other
Support person(s) present (Intake Appt)?
Genetic Counseling
Date of GC Session

MonthDayYear
Date
GC Session Complete?
Reason No GC (if known):
GC Appt Duration (minutes)
HDGGC-ID
Intention to Test?
If No, Reasons to Not Test:
Notes re: Discussion of Implications of Possible Results
Discussed
General GC Notes / Other
Support person(s) present (GC Appt)?
Order Tracking
Date Request Sent to Provider for Approval

MonthDayYear
Date
Provider

Other
Date Provider Approved

MonthDayYear
Date
Date Next Steps (Consent/Payment) Sent to Patient

MonthDayYear
Date
Date Consent Received from Patient

MonthDayYear
Date
Date Payment Received from Patient

MonthDayYear
Date
Seemingly Testing Anonymously?
Name Used for Test

First NameLast Name
DOB Used for Test

MonthDayYear
Date
Date Kit Ordered from PG

MonthDayYear
Date
FedEx PG to Patient
Date Kit Delivered to Patient

MonthDayYear
Date
FedEx Patient to PG
Date Kit Delivered Back to PG

MonthDayYear
Date
Patient Schedule Results Appt?
Date Results Scheduled

MonthDayYear
Date
Patient Schedule After-Results Follow-Up Appt?
Date After-Results Follow-Up Scheduled

MonthDayYear
Date
General Order Notes
HTT
Result
CAG1
CAG2
Results Appointment
Date Results Appointment

MonthDayYear
Date
Results appointment complete?
Results Appointment duration (minutes)
Reason No Results (if known)

Other
Support person(s) present (Results Appt)?
Notes re: Results Appt:
After-Results / Follow-Up Appointment
Date After-Results / Follow-Up Appointment

MonthDayYear
Date
After-Results / Follow-Up Appt Complete?
Reason No After-Results/Follow-Up Appt (if known)

Other
Support person(s) present (After-Results)?
Research Participation / Follow-Up Interest?
Interest in Connecting with BJ?
Notes re: After-Results Appointment
And Beyond
Sent to BJ?
Notes re: Any Additional Correspondence or Connection to Other Resources
Should be Empty:

General Information

Family History

HD Predictive Testing

Medical History

HD Genetics Operations

Support Person

General HD Info

Client Action Tracker

Intake

Genetic Counseling

Order Tracking

HTT

Results Appointment

After-Results / Follow-Up Appointment

And Beyond