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Burden of HD Chorea

Patient & Caregiver Reported Burden of Huntington's Disease (HD) Chorea and Effect of Deutetrabenazine (DTBZ) on Symptom Management and Quality of Life (QoL)

Patient & Caregiver Reported Burden of Huntington’s Disease (HD) Chorea and Effect of Deutetrabenazine (DTBZ) on Symptom Management and Quality of Life (QoL), will enable approximately 125 individuals with self-reported movements related to HD chorea and 125 caregivers caring for an individual with HD chorea, to participate in a one-time online survey asking about the impact of movements related to HD chorea.

The goals of this study are to evaluate the overall burden of living with HD chorea on individuals’ and caregivers’ quality of life and treatment goals that are important to them. If applicable, the study will also assess the self-reported impact of Austedo XR®/Austedo® (deutetrabenazine once daily or twice daily), a medication used for the management of HD chorea, on improving individual and caregiver quality of life.

Daniel Claassen, MD, MS, is the Study Principal Investigator.

Eligible patient participants must meet the following criteria:

  • Adults ≥18 years of age self-reporting movements related to HD chorea
  • Patient has access to their own compatible electronic device (smartphone, laptop, desktop, or tablet)
  • Patient has signed the electronic informed consent
  • Patient must reside in the US (including Puerto Rico)
  • Patient is able to read and write English or Spanish

 

Eligible caregiver participants must meet the following criteria:

  • Adults ≥18 years of age self-reporting as providing care for a HD chorea patient
  • Caregiver has access to electronic device
  • Caregiver has signed the informed consent
  • Caregiver must reside in US (including Puerto Rico)
  • Caregiver is able to read and write English or Spanish

Enrollment for the study will be open for approximately 6 months.

Completion of this one-time survey should take about 30-45 minutes. The survey will be offered in English and Spanish, and the study participants may choose in which language they prefer to take the survey.

Eligible participants will be asked to: 

  1. Sign-up to register on the online myHDstory® platform as a new user providing an email address and phone number. If a participant is already a registered user, they will log into the platform. Participants will then have the option to select and register for this study and will self-report that they meet all inclusion criteria. Participants must read, understand, agree to, and sign the Informed Consent Form electronically by signing, typing their name, or asking someone else to sign their name on their behalf, if someone is assisting the participant.
  2. Upon enrollment, study participants will be asked to complete the survey, including demographic and clinical characteristic information and details about current treatment management of HD chorea. Patient participants who are currently taking deutetrabenazine or caregiver participants caring for someone currently taking deutetrabenazine will be asked to complete additional survey questions about their experience with treatment.
  3. Patient participants will be able to send their caregiver an invitation to participate in a caregiver survey by entering their caregiver’s email and a link will be sent to them. The caregiver surveys include the same topics and are answered from two points of view (1) experience of caregiver of how patient’s chorea affects them personally and (2) perspective of caregiver of how chorea affects the person they care for.
  4. Patient participants will be encouraged to ask their healthcare professional to validate their identity, diagnosis of chorea associated with HD, and a few other chorea-related questions by using a QR code given to the patient when they enroll in the study.

There is no cost to participate in this study.

Participants will be provided monetary compensation for their time in the form of a digital gift card upon completion of the survey.

Patient participants will be compensated $40 for their participation, and caregiver participants will be compensated $50 for their participation. All patient participants will receive an additional $10 monetary compensation in the form of a digital gift card upon completion of the validation process by their Health Care Professional (HCP).

All HCPs will be provided $50 in monetary compensation for their time validating a patient.

If you are interested and believe you qualify to participate in this study, you may click the button below to begin the enrollment process:

Click to enroll

If you have additional questions about participating in the Patient & Caregiver Reported Burden of Huntington’s Disease (HD) Chorea and Effect of Deutetrabenazine (DTBZ) on Symptom Management and Quality of Life (QoL), please contact HSG.

Email: info@myhdstory.org

Phone: 800-487-7671