Research answers many important questions and allows for the discovery of new treatments. Are you looking to get involved? Check out the list below for active and upcoming studies within Illinois. Some trials are enrolling at different locations. Click the name of the center you would like to enroll at to generate an email. Please include your name in the appropriate space before sending.
Enroll-HD
Enroll-HD is the world's largest observational study for Huntington's Disease families. By monitoring how the disease happens in people and how it changes over time in very fine detail with the same tests and assessments around the world, researchers can use the huge data and biosample collection to learn more and come up with new ways to effectively treat HD.
To get involved, reach out to either:
Rush University Medical Center | Northwestern Medicine
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Northwestern Biorepository
The Parkinson’s Disease and Movement Disorders Center Biorepository is a data and biospecimen repository that stores demographic and clinical information and biological samples from patients and healthy controls evaluated at the Regenstein Center for Neurological Care at Northwestern Memorial Hospital. Eligible participants include patients with movement disorders, such as Parkinson’s disease, progressive supranuclear palsy, multiple systems atrophy, Huntington’s disease, dystonia, dementia with Lewy bodies, and spinocerebellar ataxias. Unaffected family controls and unrelated controls are also eligible. The Biorepository is approved by the NU IRB. All participants provide DNA samples and clinical information, and optionally may also provide blood, cerebral spinal fluid, and skin biopsies.
To get involved, reach out to:
Northwestern Medicine
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Rush Movement Disorder Repository
The Parkinson’s Disease and Movement Disorders Clinic Repository is a databank that stores clinical and demographic information, biological samples, and video recordings from patients. Eligible participants include patients with movement disorders, such as Parkinson’s disease, progressive supranuclear palsy, multiple systems atrophy, Huntington’s disease, dystonia, dementia with Lewy bodies, spinocerebellar ataxias, and functional movement disorders. The Repository is approved by the Rush IRB. All participants provide clinical and demographic information and are given the option to also provide blood and/or video recordings taken at their clinic visit.
To get involved, reach out to:
Rush University Medical Center
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Care Partner Bootcamp
Huntington’s Disease Care Partners are invited to participate in a virtual bootcamp series consisting of several weekly interactive webinars. The goal of our community program is to develop a Huntington’s Disease (HD) care partner bootcamp series designed to train care partners and provide insight into a variety of topics within caregiving and the unique challenges of HD. The program will aim to provide care partners with strategies to cope and assist a loved one living with HD and also provide an opportunity to ask questions and share.
To get involved, reach out to:
Northwestern Medicine
_____________________________________________________________________________________________________________________________________________
Social Cognition Training in Huntington's Disease
Individuals with Huntington's Disease are invited to articipate in a trial to explore whether a computerized training program can improve social skills and quality of life while decreasing caregiver burden. Participation may last up to 12 weeks, including 2 in person study visits and training 5-7 days per week for 30 minutes.
To get involved, reach out to:
Rush University Medical Center
_______________________________________________________________________________________________________________________________________________________________________________________
Invest-HD
The INVEST-HD study is a randomized, placebo-controlled, double-blind Phase 3 study to evaluate the efficacy, safety and tolerability of votoplam in participants with Huntington’s Disease.
To get involved, reach out to either:
Rush University Medical Center | Northwestern Medicine
If you are conducting a Huntington's Disease research study in the state of Illinois and would like it listed, please reach out to tsvymbersky1@gmail.com with study details.
Observational Research Studies Interventional Research Studies Upcoming Research Studies
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Actively Recruiting
Observational Research - Non-experimental research done by assessing and recording health outcomes in groups of participants without changing routine medical care or lifestyle.
Enroll-HD
Enroll-HD is the world's largest observational study for Huntington's Disease families. By monitoring how the disease happens in people and how it changes over time in very fine detail with the same tests and assessments around the world, researchers can use the huge data and biosample collection to learn more and come up with new ways to effectively treat HD.
To get involved, reach out to either:
Rush University Medical Center | Northwestern Medicine
_____________________________________________________________________________________________________________________________________________
Northwestern Biorepository
The Parkinson’s Disease and Movement Disorders Center Biorepository is a data and biospecimen repository that stores demographic and clinical information and biological samples from patients and healthy controls evaluated at the Regenstein Center for Neurological Care at Northwestern Memorial Hospital. Eligible participants include patients with movement disorders, such as Parkinson’s disease, progressive supranuclear palsy, multiple systems atrophy, Huntington’s disease, dystonia, dementia with Lewy bodies, and spinocerebellar ataxias. Unaffected family controls and unrelated controls are also eligible. The Biorepository is approved by the NU IRB. All participants provide DNA samples and clinical information, and optionally may also provide blood, cerebral spinal fluid, and skin biopsies.
To get involved, reach out to:
Northwestern Medicine
_____________________________________________________________________________________________________________________________________________
Rush Movement Disorder Repository
The Parkinson’s Disease and Movement Disorders Clinic Repository is a databank that stores clinical and demographic information, biological samples, and video recordings from patients. Eligible participants include patients with movement disorders, such as Parkinson’s disease, progressive supranuclear palsy, multiple systems atrophy, Huntington’s disease, dystonia, dementia with Lewy bodies, spinocerebellar ataxias, and functional movement disorders. The Repository is approved by the Rush IRB. All participants provide clinical and demographic information and are given the option to also provide blood and/or video recordings taken at their clinic visit.
To get involved, reach out to:
Rush University Medical Center
_______________________________________________________________________________________________________________________________________________________________________________________
Inverventional Research - Clinical studies in which participants are assigned to groups to recieve an invervention or placebo so researchers can evaluate the effects of the intervention on a condition.
Care Partner Bootcamp
Huntington’s Disease Care Partners are invited to participate in a virtual bootcamp series consisting of several weekly interactive webinars. The goal of our community program is to develop a Huntington’s Disease (HD) care partner bootcamp series designed to train care partners and provide insight into a variety of topics within caregiving and the unique challenges of HD. The program will aim to provide care partners with strategies to cope and assist a loved one living with HD and also provide an opportunity to ask questions and share.
To get involved, reach out to:
Northwestern Medicine
_____________________________________________________________________________________________________________________________________________
Social Cognition Training in Huntington's Disease
Individuals with Huntington's Disease are invited to articipate in a trial to explore whether a computerized training program can improve social skills and quality of life while decreasing caregiver burden. Participation may last up to 12 weeks, including 2 in person study visits and training 5-7 days per week for 30 minutes.
To get involved, reach out to:
Rush University Medical Center
_______________________________________________________________________________________________________________________________________________________________________________________
Upcoming Research Studies - Not Yet Recruiting
Invest-HD
The INVEST-HD study is a randomized, placebo-controlled, double-blind Phase 3 study to evaluate the efficacy, safety and tolerability of votoplam in participants with Huntington’s Disease.
To get involved, reach out to either:
Rush University Medical Center | Northwestern Medicine
If you are conducting a Huntington's Disease research study in the state of Illinois and would like it listed, please reach out to tsvymbersky1@gmail.com with study details.