Research Recruitment
KINECT - HD 2 Study: need one participant
Northwestern Medicine will be participating in an open-label extension study of Kinect-HD. The purpose of this study is to continue to gather safety and efficacy data on Valbenizine for the treatment of Huntington's chorea, while also providing study subjects who participated in Kinect-HD continued access to the study drug. In this open-label study, all subjects are given Valbenazine, even if they received placebo during Kinect-HD. Kinect-HD 2 is open to research subjects who completed participation in Kinect-HD. For more information on Kinect-HD 2 contact Zsa Zsa Brown at 312-503-4121 or zsazsabrown@northwestern.edu
Hi-DEF Scale Study: NOW RECRUITING
Individuals with Huntington’s disease are invited to participate in the Hi-DEF Scale Study. The purpose of this study is to learn more about impact of Huntington’s disease on cognition and everyday functioning. The study involves a one-time commitment that lasts about 2.5-3 hours. Participants will be asked to complete some online questionnaires and two online cognitive tests. Once finished, the participant will be compensated for their time. If you’re interested in learning more about the study or how to get involved, please contact Destiny Gomez at 312-503-2778 or destiny.gomez@northwestern.edu.
PROOF-HD
Northwestern is excited to be participating in the PROOF-HD Study. This is a phase 3, randomized, placebo-controlled study evaluating the efficacy and safety of an oral drug called Pridopidine in patients with early-stage Huntington's disease. The objective is to see if Pridopidine can slow down functional decline in Huntington's disease when compared to a placebo pill. If you are interested in learning more about the study and how to get involved, please reach out to study coordinator ZsaZsa Brown at 312-503-4121.
MEANING INTERVENTION FOR NEWLY DIAGNOSED WITH HUNTINGTON'S DISEASE (MIND-HD) - COMING SOON
We invite people with Huntington's disease (HD) to participate in a study called "MIND-HD," funded by our recently awarded Huntington's disease Society of America Center of Excellence Pilot Grant. Our study involves two phases and will launch soon.
The first consists of optimizing health-related quality of life intervention, called "Meaning-Centered Psychotherapy (MCP)." MCP, continuously funded by the National Institutes of Health for over two decades, improves spiritual well-being in the advanced cancer population. However, MCP has yet to undergo testing for other non-cancer folks. Therefore, the optimization process will entail the study investigators leading focus groups and obtaining feedback from caregivers, family members, clinicians, and people with HD. The second phase will determine the feasibility and acceptability of the refined intervention to people with prodromal and early-stage HD. Dr. Danny Bega, MD, MSCI, and Dr. Leonard L. Sokol, MD, will lead the study at Northwestern.
Eligibility Criteria:
- Caregiver of a person with the HD genetic mutation
- Family member or friend of someone with the HD genetic mutation
- A person with the HD genetic mutation, in the prodromal or early stage of the disease
- Age 18 or older
- Have Internet access with a microphone and/or video camera
- Able to converse in English
You May Be Asked to Participate in One or More of the Following:
- Enroll in one to two, one-hour focus group sessions with other members of the HD community, discussing how the intervention can be best refined to the HD community
- Complete seven one-hour video conference technology sessions between you and a MIND-HD interventionist
- Submit answers to a brief survey and undergo post-intervention interviews to further refine the intervention for additional study
When will the recruit start?
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Coming soon. Those who are interested in obtaining additional information for the future should email Leonard.Sokol@NM.org. Dr. Sokol will provide further details soon.
Telemedicine for Huntington's Clinical Care
Individuals with Huntington's disease are invited to participate in the study "TeleHD" to determine the feasibility and value of telemedicine visits for HD patients and their care partners. This research study is conducted by Dr. Danielle Larson and Dr. Danny Bega.
Who is Eligible?
- Have a diagnosis of Huntington’s Disease
- Ages 18 to 70
- Have a computer, laptop, tablet or phone with a camera, microphone, and internet access
- Fluent in English
What will you be asked to do?
- Complete two telemedicine visits (by camera at home) in addition to your two regular in-person Huntington’s Clinic visits over a 6-9 month time period.
- During the visits, a neurologic exam will be performed and you will complete two cognitive tests. The telemedicine visits will likely take less than 30 minutes.
- After each clinic visit, you will be asked to record the time and travel burden of your visit.
- After all of the visits, you will be asked to complete a survey about your satisfaction with telemedicine visits.
Northwestern Movement Disorders Center Biorepository
The Movement Disorders Center (MDC) Biorepository is a registry aimed to collect biologic and clinical information, such as blood and tissue samples, and family and medical histories from patients diagnosed with a movement disorder. The purpose of studying materials from the registry is to identify factors that either cause these neurologic conditions or increase one’s risk for developing them. Samples collected for this biorepository include a blood sample (or a saliva sample) and a skin biopsy. Participants may choose to donate one or both samples.
KINECT-HD: Recruitment complete
This is a study for a new treatment for chorea associated with Huntington's disease. If you have chorea that is not currently being treated we need you. The study is of a medication called Valbenazine to treat chorea, and is being conducted by the Huntington Study Group and Neurocrine Biosciences. The study involves 9 visits and will last 18 weeks. There is the opportunity to stay on the drug after the first part of the study is over. Participants will be randomly selected to receive the drug or placebo at first. We are very excited to participate as one of several sites around the country. If you or someone you know is interested in taking part in KINECT-HD, please contact our study coordinator ZsaZsa Brown at 312-503-4121 or email zsazsa.brown@northwestern.edu.
