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 to confirm your interest in genetic counseling and schedule your first session with HD Genetics’ licensed counselor, which is provided at no-cost.

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 presymptomatic testing for Huntington disease.
General Information
First name (required)*
Year of Birth*
What year were you born?
Month of Birth*
What month 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
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?
Age in years of each child:
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:
If you were to move forward with genetic testing, would the cost of testing ($500) be a barrier for you?

No, it would not be a barrier. I can afford $500 for testing.Yes, it would be a barrier. Please share more with me about financial assistance.I'm not sure, please share more with me about financial assistance.
If you were to move forward with genetic testing, would the cost of testing ($750) be a barrier for you?

No, it would not be a barrier. I can afford $750 for testing.Yes, it would be a barrier. Please share more with me about financial assistance.
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.

No, it would not be a barrier. I can afford $750 for testing services.Yes, it would be a barrier. I could afford $500.Yes, it would be a barrier. I could afford $250.Yes, it would be a barrier. I could afford $150.Yes, it would be a barrier. I can not afford any amount at this time.
Do you currently have any of these insurance products in place? Check all that apply.

Long-term careLife insuranceDisability insuranceMedical insurance
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
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?

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?
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?

YesNo
If you have biological siblings, have any of them undergone genetic testing for HD?

YesNoI'm not sure
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 physicianOther
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
What are 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 your motivations &/or reasons for pursuing genetic testing in more detail.
Have you previously spoken to any healthcare professionals about genetic counseling or testing for HD?

YesNo
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?

0-2 months2 months - 1 year1 - 3 years3 - 5 years5+ years
In the past year, how often do you think about your genetic risk for HD?

DailyWeeklyMonthlyVery rarelyNever
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

1

2

3

4

5

6

7

8

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.

NoneStarting a new jobStarting a new school or programMoving to a new areaGetting marriedSeparating from a partnerHaving a baby or adoptionFamily vacation or reunionOther
Would you like HD Genetics’ genetic counselor to highlight any specific topics during your first counseling session? Check all that apply.

HD Genetics' overall process and procedureTesting processMeaning of resultsTesting anonymouslyCost of genetic testingClinical trialsAdvocacy / support resources and programsGenetic discrimination concernsOther
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?

YesNo
If yes, please indicate when:

MonthDayYear
Date
Have you ever had a bone marrow or hematopoietic stem cell transplant using cells from a donor?

YesNo
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?*

YesNo
What electronic device will you be using for the genetic counseling video consultations with HD Genetics?

Laptop computer with video chat capabilityDesktop computer with video chat capabilityiPad or tablet with video chat capabilityCell phone (“Smart phone” with video chat capability)Other
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 first counseling session? Check all that apply

MondayTuesdayWednesdayThursdayFridayNo preference
Do you have a preferred time of day for the first counseling session? Check all that apply

MorningAfternoonEveningNo preference
Support Person

We highly encourage you to have a support person join you throughout your genetic testing process. This can be anyone (up to two people) you feel would be the most supportive of you during this time. 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. If you’d like more than two support people, please let us know during our follow up call. You are not required to have a support person with you throughout the process.
Support Person Name:
How are you related to the support person?

Partner (husband, wife, engaged, dating)FriendCoworkerParentOther
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 live with this support person?

YesNo
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

2

3

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?

Partner (husband, wife, engaged, dating)FriendCoworkerOther
Do you live with this Support Person?

YesNo
How aware is this support person about HD and the HD genetic counseling & genetic testing process?
General HD Info
Which non-profit HD patient organizations are you familiar with? Check all that apply.

HDSAHDYOHelp4HDHD ReachHD Buzz
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 Center of Excellence is located?

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

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

Enroll-HDPREDICT-HD or PREVENT-HDCOHORTKIDS-HDHD-CLARITYNoneOther
How aware are you of the current clinical trials and observational trials available to people in the USA?

Not at all awareSomewhat awareAwareVery aware
Are you interested in participating in future clinical or observational trial depending on your genetic results?

YesNoI'm not sure
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?
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?

YesNoI'm not sure
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 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 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.

In some cases a genetic counseling student/trainee (“Trainee”) may participate in your telehealth appointments. You will be informed if a Trainee is participating in your appointment. Trainees will be supervised by your Provider, and your Provider will be present during your entire consultation. However, you may request at any time that the Trainee not participate in your consultation.

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.*

I agree and continue
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General Information

Family History

HD Predictive Testing

Medical History

HD Genetics Operations

Support Person

General HD Info