For those with Parkinson’s disease, or disorders that mimic Parkinson’s disease, the University of Michigan offers comprehensive care delivered by an internationally recognized medical team, including neurologists that specialize in Movement Disorders. We treat more than 1,000 Parkinson’s patients each year as well as patients suffering from corticobasal degeneration, dementia with Lewy bodies, multiple system atrophy and progressive supranuclear palsy. Parkinson’s disease affects about one percent of people over the age of 60, and more than one million people in the United States. Parkinson’s usually begins after the age of 40, but younger patients can be affected. It is caused by the deterioration of nerve cells that make a chemical called dopamine. The disease generally presents slowly and progresses gradually over the years. The main signs of Parkinson’s disease are tremor, slowness of movement (called bradykinesia), stiffness (called rigidity), and poor balance. The tremor is a rest tremor, meaning that it is most noticeable when the limb is at rest and improves when the limb is in use. These symptoms are usually mild and barely noticeable in the early stages, but progressively worsen over time. Patients may also have symptoms that are not related to movement, many of which affect mental functioning, mood, senses and the ability to sleep or remain awake. As symptoms worsen, people may have difficulty walking, talking, or performing other tasks. It is important that patients discuss their symptoms with their physicians so that treatment can be started and optimized.
Parkinson’s Calming Essential Tremor with Deep Brain StimulationAfter years of troublesome hand tremors, an active retiree finally found relief. Learn about the procedure that helped him regain function.
Parkinson’s Disease e-Learning Module:
Improving Hospital Stays for Patients with Parkinson’s Disease Learning Module Kelvin L. Chou, MD, Professor of Neurology and Neurosurgery at the University of Michigan, Co-Director of the STIM (Surgical Therapies Improving Movement) Program, and the Education and Outreach Core Director for the U-M Udall Center of Excellence for Parkinson’s Disease, created and launched an e-learning module Improving Hospital Stays for Patients with Parkinson’s Disease Learning Module. This learning module is educating inpatient RNs, LPNs, pharmacists, house officers, and hospitalists about the specific and unique needs of the hospitalized PD patient. They will learn to identify medications that can lead to a worsening or exacerbation of symptoms, prolonging the hospital stay, and understand the importance of administering appropriate medications on time, every time, to the hospitalized patient with Parkinson’s disease. It is hoped the knowledge gained from this module will shorten hospitalization stays for patients with PD and provide them with a safer and more pleasant hospital experience.
Parkinson’s Disease & You Symposium
The Parkinson’s Disease & You Symposium, which started in 2009, is an all-day annual event that attracts people from throughout Michigan and Ohio, regardless of where they receive care. At the Parkinson’s & You Symposium, you can receive up-to-date information given by leaders in the field and connect with other people and families who are living with the condition. The University of Michigan Udall Center of Excellence for Parkinson’s Disease Research funded the last two years of the Symposium; the U-M Surgical Therapies Improving Movement (STIM) Program funded previous programs. To be notified of future events, please join our email list. 2019 Parkinson’s Disease & You Symposium – 10/4/2019The Parkinson’s Disease & You Symposium, which started in 2009, is an all-day annual event that attracts people from throughout Michigan and Ohio, regardless of where they receive care. At the Parkinson’s & You Symposium, you can receive up-to-date information given by leaders in the field and connect with other people and families who are living with the condition. The University of Michigan Udall Center of Excellence for Parkinson’s Disease Research has funded the Symposium since 2015; the U-M Surgical Therapies Improving Movement (STIM) Program funded previous programs. To be notified of future events, please join our email list. You may view the presentations from the 2019 symposium as a playlist or individually by clicking on the video window below. To view the individual videos on YouTube, click on the links below the video window.
Click on a link below to view a video on YouTube:
. 2018 Parkinson’s Disease & You Symposium – 10/19/18 The annual Parkinson’s disease symposium took place October 19th, 2018. Our speakers were comprised of University of Michigan Faculty and experts in their fields who eagerly shared their knowledge. Presentations this year included a Parkinson’s overview; adaptive equipment & home modifications; psychiatric symptoms; and alternative therapies (medical marijuana & supplements)
Dementia: What Now? Interventions for the Patient and Caregiver After the Diagnosis – 9/27/18 Dr. Roger Albin, Co-Director University of Michigan Udall Center, presented on Dementia Types and Trajectory at the Veterans Affairs Ann Arbor Healthcare System’s CME Program: Dementia: What Now? Interventions for the Patient and Caregiver After the Diagnosis. The program was held on September 27, 2018 at the Kensington Hotel in Ann Arbor, Michigan. This conference was attended by physicians, nurse practitioners, physician assistants, nurses, pharmacists, social workers, and other practitioners taking care of older adults with dementia in the community, hospitals, and nursing facilities. See Program (link) 2017 Parkinson’s Disease & You Symposium Videos You can view the presentations from the 2017 Symposium as a playlist by clicking on the video window below, or by clicking on the links below the video to view the individual sessions on YouTube.
Click on the image above to access and manage the playlist for of all 4 videos from this year’s Parkinson’s Disease and You Symposium. Or view the individual videos on YouTube by clicking on the links below.
- Parkinson’s Disease: The Basics:(link is external) Kelvin Chou, M.D. An introduction to Parkinson’s disease, including signs and symptoms, how a diagnosis is made, and treatment options.
- Parkinson’s Disease and the Bladder:(link is external) Dr. Anne Pelletier-Cameron, M.D. A discussion of how the bladder functions, common bladder-related symptoms in Parkinson’s disease, and options for diagnosing and treating bladder conditions in people with PD.
- Physical Therapy and Parkinson’s Disease:(link is external) Patrick Hoag, O.T. , Dayna Ryan, P.T. The many benefits of exercise for patients with Parkinson’s disease, physical therapy options and a demonstration of stretches, exercises and tips to increase physical activity.
- Sexuality and Parkinson’s Disease(link is external): Daniela Wittmann, Ph.D., LMSW. Recognizing and addressing common sexual problems in patients with Parkinson’s disease.
2016 Parkinson’s Disease & You Symposium Videos You can view the presentations from the 2016 Symposium by clicking on the links below.
- Parkinson’s Disease 101: Dr. Kara Wyant. An introduction to Parkinson’s disease, including signs and symptoms, how a diagnosis is made, and treatment options.
- Deep Brain Stimulation (DBS) for Parkinson’s Disease: Dr. Emily Levin. Deep brain stimulation (DBS) improves Parkinson’s disease symptoms, but is it right for you? This video describes what DBS is, what it can do for you, and much more.
- Sleep Disorders in Parkinson’s Disease: Dr. Andrew Berkowski. A sleep specialist describes sleep disorders that are prevalent in Parkinson’s disease.
- Cognitive and Psychiatric Disorders in Parkinson’s Disease: Dr. Andrew Ridder. Parkinson’s is more than a movement disorder. Dr. Ridder explains the non-motor (non-movement) cognitive and psychiatric problems seen in people with Parkinson’s disease.
- Parkinson’s Research – Neuroimaging; Martijn Muller, PhD. In addition to the loss of dopamine, other neurodegenerative pathologies may occur as well, and the presence of these additional neuropathies contributes to the severity of the disease.
- Parkinson’s Research – Patient Perspectives: Marilyn Guidinger, PhD.
Includes ways for people with Parkinson’s disease to work with researchers on PD’s most pressing issues. 2015 Parkinson’s Disease & You Symposium Videos You can view the presentations from the 2015 Symposium by clicking on the links below.
- Parkinson’s Disease 101: Dr. Jonathan Snider
- Parkinson’s Disease – Fatigue: Dr. Praveen Dayalu
- Parkinson’s Disease – Speech and Swallowing Problems: Karen Kluin
- Parkinson’s Disease – Lewy Body Disorders: Dr. Carol Persad
- Parkinson’s Disease – Balance, Falls & Cognition: Dr. Roger Albin
. You can also view the 2015 Movement Disorders brochure here. .
. Multidisciplinary Movement Disorders Clinic
Patients who come to the Movement Disorders Clinic are seen by a movement disorders specialist, a neurologist who has extra training in evaluating and treating a person with Parkinson’s disease. There are no blood or imaging tests that can confirm Parkinson’s disease, so diagnosis is based on visible signs and symptoms, which are reviewed during a medical history and neurologic examination. Despite the fact that Parkinson’s disease slowly worsens over a number of years, we now have effective medications that act on the dopamine system and allow patients to do well for a significant period of time. One of the best medications for the disease is called levodopa, which gets changed to dopamine in the brain and significantly improves symptoms. Other treatment options include dopamine agonists, COMT inhibitors, and MAO-B inhibitors, all of which help to enhance dopamine transmission in the brain. Early in the disease, medications may work well, but as time goes on patients may find the effects don’t last as long. They will feel slow, stiff, and many will develop dyskinesias or abnormal, involuntary movements. When people start experiencing these symptoms despite taking medications, deep brain stimulation surgery (DBS) is often recommended. DBS involves placing electrodes in precise locations of the brain. The electrodes are connected to a wire that runs underneath the skin to a battery in the chest. When electrical stimulation is delivered to the brain, the tremor improves. It’s like a pacemaker for the brain, instead of the heart. To make an appointment, call 734-764-6831. .
Cutting Edge Surgical Program
Our Surgical Therapies Improving Movement (STIM) program includes one of the largest deep brain stimulation centers in the Midwest region. We have a multidisciplinary evaluation program for potential surgical candidates including members from neurology, neurosurgery, neuropsychology, speech pathology, radiology and social work. In addition, we are home to internationally-renowned researchers who are studying the underlying causes of Parkinson’s disease as well as new treatments. For those who qualify for the surgery, neurosurgery works closely with rehabilitation for patients who may need physical, occupational and speech therapy. DBS helps to relieve motor symptoms such as stiffness, improves the ability to move and may also reduce the severity of tremor. And whereas levodopa causes additional dyskinesias over time, DBS has been found to relieve them. Another benefit of DBS is that since electrical stimulation is constantly delivered to the brain, patients experience an increase in their “on” time – when motor function is good, while “off” times – when motor function is poor, are typically shorter and milder than before surgery.
Michigan Parkinson Foundation
The Michigan Parkinson Foundation has affiliated support groups across the state of Michigan. These groups generally meet on a monthly basis. Support groups provide people with PD and their families the opportunity to learn more about this condition and its management.
If there are no support groups in your area and you are interested in having one formed, please contact the Michigan Parkinson Foundation at (800) 852-9781.
Phone: 1-800-617-8711 Here you can find basic PD information as well as information on classes, events calendar and support group meetings in the Grand Rapids, Holland, Montcalm County and Muskegon areas. They also maintain a library of materials — accessible at meetings or by mail — to help patients and their families learn as much as possible about the disease. .
Phone: 231-947-1946 (Maxine Meach) OR 231-947-7389 (Hettie Molvang)
Parkinson’s Network North is a non-profit organization based in Traverse City. Their mission is to empower individuals and families to meet the challenges of living with Parkinson’s Disease through sharing of information, education, personal support, and advocacy for a cure. They strive to maintain an up-to-date list of available community resources which may be helpful to people with Parkinson’s and their families, and they host an educational forum every summer.
- National Parkinson Foundation (NPF) Helpline: 1-800-4PD-INFO (1-800-473-4636) The National Parkinson Foundation has excellent educational resources for patients caregivers and professionals alike. You can search or browse their PD library for books, videos & webcasts, DVD’s, PD-related websites and NPF publications. Many of the NPF publications can be viewed online or can be mailed to you at low/no cost and some are available for download. They have developed an excellent and comprehensive series of manuals addressing various aspects of living with Parkinson’s. They also have a newsletter which you can sign up to receive electronically or through the mail. Parkinson’s Disease Foundation (PDF) Helpline: 1-800-457-6676 The Parkinson’s Disease Foundation has numerous educational/informational publications that can be ordered free of charge. They have excellent resources for learning about and living with PD including an informational packet geared towards “newly diagnosed”. They have regular online seminars on PD related topics, as well as user-friendly, printable fact sheets on various topics. Their newsletter is available online or you can sign up to receive electronic or print copies. They also have a comprehensive guide that includes over 650 community resources throughout the US and around the world. It is available in print and is searchable online. National Institute of Neurological Disorders and Stroke The NINDS website contains extensive information about neurological disorders including Parkinson’s disease. Disease-specific information as well as information about research is available on the site. Also included is an extensive list of government resources. Michigan Resources:
- American Parkinson Disease Foundation (APDA)
- Parkinson’s Society of Canada.
- International Parkinson and Movement Disorder Society
. Young Onset Resource:
. Parkinson Plus Organizations:
- Essential Tremor
- Society for Progressive Supranuclear Palsy Society for PSP
- Multiple System Atrophy: The MSA Coalition
. Additional Resources:
. Online Parkinson Resources:
- worldpdcongress.org (World Parkinson Congress)
Join a Study
Now is the time to join our research team. Research participation is a generous gift – a gift that can be shared with future generations as we pave the way to new discoveries in treatment and prevention. Research participation contributes to the discovery of new ways to diagnose, treat and support people with Parkinson’s disease.
If you are interested in joining a particular study, please contact the study coordinator listed.
MHealth Research allows patients to learn about some of our current research studies. Just type in a diagnosis in the search box (for example, Parkinson’s disease) and then the list of studies that are currently using this site will pop-up.
For a complete list of research studies, see below:
Parkinson’s Disease Clinical Research Studies
Brain Small Chain Fatty Acid Metabolism in Parkinson Disease: Tributyrin supplementation (PI: Bohnen/Albin)
Objective: To explore glucose metabolism, clinical measures, and [11C]butyrate and [18F]FDG PET imaging before and after open-label treatment using the small chain fatty acid (SCFA) prodrug, tributyrin, in a small pilot study in patients with PD and healthy older adults.
- Healthy control persons
- Age 45 years and above (M/F)
- Without history of neurological or psychiatric disease, significant GI disease, or uncontrolled medical comorbidity
- Parkinson’s disease (PD)
- Diagnosis of PD based on the United Kingdom Parkinson’s Disease Society Brain Bank Diagnostic Research Criteria
- M/F, age 45 years and over
- Subjects with contra-indications to MR imaging, including pacemakers or claustrophobia
- Evidence of large vessel stroke or mass lesion on MRI
- Regular use of anti-cholinergic, benzodiazepines or neuroleptic drugs
- history of significant GI disease
- significant metabolic or uncontrolled medical comorbidity
- poorly controlled diabetes
- pregnancy or breast feeding
- dementia requiring informed assent
- suicidal ideation
Causal examinations of the attention-motor interface in gait and falls (PI: Lee/Albin)
Objective: This study will explore how the brain areas important for attention and short-term memory might be contributing to some of the movement issues seen in persons with Parkinson’s Disease. Sessions will involve magnetic resonance imaging (MRI) and transcranial magnetic stimulation (TMS).
- Parkinson disease (PD) with PD diagnosis based on the recent Movement Disorder Society criteria.
- PD subjects >45 years and <91 will be studied.
- H&Y1-2 (early PD) subjects will be recruited.
- Only PD subjects on stable dopamine replacement therapy will be recruited.
- The presence of other neurologic disease or neurologic findings on examination.
- Depression: Geriatric Depression Scale (GDS) score >11.
- Evidence of a stroke or mass lesion on prior structural brain imaging (CT or MRI).
- Evidence of any confounding medical or psychiatric problem that would preclude task participation.
- Metallic medical implants (i.e. pacemaker), foreign objects in body, non-removable body-piercings
Additional exclusion criteria related to TMS:
- Metal in the cranium (mouth excluded)
- Cardiac pacemaker
- Implanted medication pump
- Implanted deep brain stimulator or vagus nerve stimulator
- Intracardiac lines
- Serious heart disease
- Increased intracranial pressure
- History of seizures
- Epileptogenic medication
- Cochlear implants
- Recent extended air travel resulting in jetlag or other sleep deprived state
Coordinator: Teresa Scerbak email@example.com
Cholinergic mechanisms of attentional-motor integration and gait dysfunction in Parkinson Disease. The Morris K. Udall Center of Excellence for Parkinson’s Disease Research. (PI: Bohnen)
Objective: Advance our understanding of progressive cholinergic changes within specific subcortical and cortical structures subserving cognitive and attentional-motor integration functions in PwP at risk of dementia, balance and gait disturbances.
- Age 45 and above (M/F).
- PD diagnosis (with or without Mild Cognitive Impairment) will follow the Movement Disorder Society-revised clinical diagnostic criteria for PD (7). Absence of dementia confirmed by neuropsychological testing. Modified Hoehn and Yahr stages 1-4 (8, 9).
- All PD subjects are required to have nigrostriatal dopaminergic denervation as demonstrated by vesicular monoaminergic transporter type-2 (VMAT) [11C]DTBZ positron emission tomography (PET) imaging. This may be based on a prior DTBZ PET scan or the DTBZ PET scan performed as part of this study.
- Presence of clinically significant dementia.
- Disorders which may resemble PD, such as dementia with Lewy bodies, vascular dementia, normal pressure hydrocephalus, multiple system atrophy, corticobasal ganglionic degeneration, or toxic causes of parkinsonism. The use of the Movement Disorder Society-revised clinical diagnostic criteria will mitigate the inclusion of PD subjects with atypical parkinsonism.
- Subjects on neuroleptic, anticholinergic (trihexiphenidyl, benztropine), or cholinesterase inhibitor drugs. Subjects with prior exposure to disallowed medications may be eligible if there has been an interval of > 2 months off these medications.
- Evidence of a large vessel stroke in a clinically relevant area (cerebral cortex, basal ganglia, thalamus) or mass lesion on structural brain imaging (MRI or CT).
- Participants in whom MRI is contraindicated including, but not limited to, those with a pacemaker, presence of metallic fragments near the eyes or spinal cord, or cochlear implant.
- Severe claustrophobia precluding MR or PET imaging.
- Subjects limited by previous participation in research procedures involving ionizing radiation.
- Pregnancy (test within 48 hours of each PET session) or breastfeeding.
- History of deep brain stimulation surgery.
- Suicidality (responses 2 or 3 for question 9 on the Beck Depression Inventory).
The Thalamus in Parkinson Disease (PIs: Albin/Bohnen)
Objective: To understand the role of thalamus dysfunction in Parkinson disease. This study involves brain imaging studies of important brain chemical messengers, and careful characterization of motor and cognitive functions.
- Age 45 and above, Male or Female.
- PD diagnosis (with or without mild cognitive impairment).
- All PD subjects will be required to have nigrostriatal dopaminergic denervation as demonstrated by PET scan.
- Presence of significant dementia.
- Disorders which may resemble PD, such as dementia with Lewy bodies, vascular dementia, normal pressure hydrocephalus, multiple system atrophy, corticobasal ganglionic degeneration, or toxic causes of parkinsonism.
- Subjects on neuroleptic (except for low dose quetiapine 25-50 mg/d), anticholinergic (trihexiphenidyl, benztropine), cholinesterase inhibitors. Subjects with prior exposure to disallowed medications may be eligible if there has been an interval of greater than 2 months and/or 5 times their plasma half-life off these medications.
- Evidence of a large vessel stroke in a clinically relevant or mass lesion on structural brain imaging.
- Participants in whom magnetic resonance imaging (MRI) is contraindicated including, but not limited to, those with a pacemaker, presence of metallic fragments near the eyes or spinal cord, or cochlear implant.
- Severe claustrophobia.
- Subjects limited by previous participation in research procedures involving radiation. Pregnancy (test within 48 hours of each PET session) or breastfeeding.
- History of deep brain stimulation surgery.
- Subjects with primary ophthalmological disorders, such as glaucoma, resulting in poor vision (corrected vision OU < 0.2).
Coordinator: Fotini Michalakis firstname.lastname@example.org.
PPMI 2.0 (PI: Chou)
Objective: to continue to obtain information from people with and without Parkinson disease so that researchers may better understand how PD progresses, in order to inform better treatments. Study procedures include DaTscan, MRI, Lumbar puncture and skin biopsy.
- 30+ years old
- PD diagnosed w/in 2 years
- Not expected to require PD medication within at least 6 months from Baseline
- Must have at least two of the following: resting tremor, bradykinesia, rigidity (must have either resting tremor or bradykinesia); OR either asymmetric resting tremor or asymmetric bradykinesia
- Hoehn and Yahr stage I or II
- Confirmation that participant is eligible based on Screening DaTscan imaging
- Treatment naive
- Currently taking levodopa, dopamine agonists, MAO-B inhibitors, amantadine or another PD medication.
- Has taken levodopa, dopamine agonists, MAO-B inhibitors or amantadine within 60 days of Baseline visit.
- Received any of the following drugs: dopamine receptor blockers, metoclopramide and reserpine within 6 months of Screening visit.
- A clinical diagnosis of dementia
- Previously obtained MRI scan with evidence of clinically significant neurological disorder
- Current treatment with anticoagulants that might preclude safe completion of the lumbar puncture.
Vigor and the LDR in Parkinson Disease (PI: Albin)
Objective: To explore how levodopa treatment in PD produces the Long Duration Response (LDR).
- PD diagnosis
- Previously untreated
- H&Y I or II
- Age >45 and <81
- Presence of other neurologic disease or findings on examination
- Cognitive impairment: MoCA score of <24
- Depression: GDS score of >5
- Use of dopamine agonists or stimulants
- Evidence of a stroke or mass lesion on prior structural brain imaging (MRI or CT)
- Evidence of any confounding medical or psychiatric problem that would preclude task participation
- Demographic Data
- Clinical Rating Scales: UPDRS, PD-CRS, GDS, Lille Apathy Scale, etc.
- Simple Tests of Motor Function, Motivational Function
Coordinator: Teresa Scerbak email@example.com
Citalopram in PD (PI: Kotagal)
Objective: To evaluate the ability of citalopram to alter progression of visuospatial cognitive decline and amyloid-beta plaque deposition in Parkinson disease. A subject will be enrolled for 28 months and will have study visits approximately every 3 months.
- 65 years of age and older
- Diagnosis of Parkinson’s Disease, Hoehn and Yahr stage 2-3
- No current dementia
- Not currently on an SSRI, SNRI, or TCA
- Active Depression (GDS of 10/30 or greater)
- Prolonged QTc interval on EKG
- Contraindications for Brain MRI or PET imaging
Web-based Automated Imaging Differentiation of Parkinsonism (PSG/U01 Site-PI: Bohnen)
Objective: To evaluate diagnostic performance of free water MR imaging to help with the differential diagnosis of atypical parkinsonism.
- Possible/probable MSA-P
- Possible probable PSP
- Contra-indication to MRI
- Pregnant or nursing women
SPARX3: Study In Parkinson Disease of Exercise Phase 3 Clinical Trial (PI: Haus)
Objective: to learn more about the effects of aerobic exercise on people with Parkinson’s disease who have not yet started medication for their PD. It will compare the effects of moderate intensity (60-65% HRmax) treadmill exercise to high intensity (80-85% HRmax) treadmill exercise on the signs and symptoms of Parkinson’s disease.
- Primary Parkinson’s Disease diagnosed using UK Brain Bank Criteria (< 3 years since diagnosis)
- Age 40-80 years
- Hoehn and Yahr stage less than 3
- Currently treated with dopaminergic therapies or expected to require such treatment within next 6 months
- Use of PD medication within past 60 days
- Poorly controlled or unstable cardiovascular, metabolic, or renal disease
- Hypertension, hypo- or hyperthyroidism, and/or abnormal renal function. Orthostatic hypotension & standing systolic BP < 100
- Disorders that interfere with ability to perform endurance exercises
- >120 minutes/week moderate intensity endurance exercise for more than 6 months
- MoCA score <26, BDI score >16
- Prior SPECT scan within past 6 months
- Allergy to iodinated products/hypersensitivity to DaTscan™ SPECT
- Women who are pregnant or plan to become pregnant in next 12 months
Coordinator: Kendell Lewis firstname.lastname@example.org (734) 647-2706
For Parkinson’s Disease/Dementia with Lewy Bodies
Stimulation of the Cingulo-opercular Alertness Network in LBD (SCAN)
Objective: To better understand the effects of transcranial direct current stimulation (tDCS) for improving alertness in Lewy Body dementia or Parkinson’s Disease dementia.
- Age 50 to 90 years
- Diagnosis of DLB with cognitive fluctuations or PDD
- Currently on a stable dose of cholinesterase inhibitors
- PDD: dementia with established PD diagnosis using UKPDSBRC criteria
- Probable DLB: dementia with two of the following: cognitive fluctuations, visual hallucinations, parkinsonism, abnormal DATscan, RBD
- History of conditions like stroke, epilepsy, multiple sclerosis, or severe brain injury
- Contraindication to MRI or tDCS
- Currently taking neuroleptics
Lewy Body Dementia Biomarkers (PI: Frey)
Objective: To identify protein accumulations in the brain in patients with PD-related dementia using brain imaging (PET and MRI). The study is also part of the Parkinson’s Disease Biomarker Program (PDBP) and will involve annual MDS-UPDRS exams, cognitive testing, and the collection of biofluid samples that will become part of a national data repository. Participation lasts up to 5 years.
- Age 55 years and older.
- Dementia (DSM- defined cognitive impairment that impairs working, social interactions or ADLs)
- MMSE > 16
- PDD: dementia with established PD diagnosis using UKPDSBRC criteria
- Probable DLB: dementia with twoof: cognitive fluctuations, visual hallucinations, parkinsonism, abnormal DATscan, RBD
- Possible DLB: dementia with any one of the above features
- Significant neurological or psychiatric conditions, other than PDD or DLB.
- Contraindication to MRI
- Neuroleptics other than quetiapine
For Huntington’s Disease
A Phase I/II, Randomized, Double-blind, Sham Control Study to Explore Safety, Tolerability, and Efficacy Signals of Multiple Ascending Doses of Striatally-Administered rAAV5-miHTT Total Huntingtin Gene (HTT) Lowering Therapy (AMT-130) in Early Manifest Huntington Disease
Objective: demonstrate safety and tolerability of AMT-130 when delivered directly to the brain by evaluating changes in safety parameters out to 5 years post AMT-130 treatment in genetically confirmed, early manifest HD patients.
- 25-65 years of age
- Clinical diagnosis of early manifest HD
- Total Functional Capacity Score (TFC) 9-13
- Diagnosis Confidence Level (DCL) 4 or
- DCL of 3 with either a positive (“Yes”) response to the UHDRS Question 80 (multidimensional manifest diagnosis on motor, cognitive, behavioral, functional) or DSM5 criteria for cognitive disorder
- CAG repeat ≥ 40
- HD con meds stable for 3 months prior to screening
- Putamen volume of ≥2.5 cm3 (per side) and a caudate volume of ≥2.0 cm3 (per side) on MRI
- Suicidal risk
- Contraindication to MRI or LP
- Malignancy in past 5 years
- History of gene therapy
- Significant neurologic comorbid disorder or brain and spinal pathology that may interfere with the surgical delivery of AMT-130
Coordinator: Angela Stovall email@example.com
Real-time Assessment of Chorea in Persons with Huntington Disease (PI: Carlozzi)
Objective: To examine the role of chorea in the day-to-day experience of symptoms (sleep, fatigue and anxiety) and functioning (including physical activity and social participation) in individuals with HD using ecological momentary assessment (EMA) and daily diary methodology.
- Be at least 18 years old
- Have either a positive gene test for HD and/or have a clinical diagnosis of HD
- Be able to read, speak, and understand English
- Be able to provide informed consent
- Be able to operate the PRO-Diary wrist-worn device independently or have someone who can assist with its operation (putting the watch on/off, silencing alerts, entering the EMA ratings, etc.)
- Be willing to complete all study assessments, including wearing the PRO-Diary 24 hours/day during the 7-day home monitoring period, except for when bathing/showering/swimming.
- Self-reported neurological insult (epilepsy or seizure disorder, multiple sclerosis, Parkinson’s disease, Alzheimer’s disease/other dementia, stroke, traumatic brain injury, or brain tumor)
- Anything that would preclude safe or meaningful participation in the study
Coordinator: Aadi Nalla firstname.lastname@example.org
ENROLL-HD: A Prospective Registry Study in a Global Huntington’s Disease Cohort (PIs: Carlozzi & Dayalu)
Objective: Worldwide longitudinal observational study of Huntington’s disease (HD) whose overarching goal is to accelerate progress towards the development of effective therapeutics for HD
- Individuals who carry the HD gene expansion mutation (stage 1 and 2 only)
- Individuals who do not carry the HD expansion mutation
- First or second degree relatives to a carrier;
- Family members or individuals not related by blood to carriers (e.g. spouses, caregivers); or
- Community controls, which are individuals unrelated to HD carriers who did not grow up in a family affected by HD
- Individuals who do not carry the HD expansion mutation
- Individuals with choreic movement disorders in the context of a negative test for the HD gene mutation
- For community controls: individuals with a major central nervous system disorder (e.g. stroke, Parkinson’s disease, Multiple Sclerosis, etc.)
- Healthy control persons