Probably everyone in our group can find something of relevance in this post.
It has been awhile since Brain Support Network published a list of all of the MSA, LBD (DLB or PDD), PSP, or CBD research studies currently recruiting at non-profit institutions in Northern and Central California. BSN staff member Arif H. helped compile the list below to encourage everyone our community to participate in at least one of these studies!
Listed below are studies for: (if you don’t know what an acronym means, just skip over it!)
* those with a PDD, MSA, PSP, CBD, CBS, or DLB diagnosis
* those with RBD and no neurological diagnosis
* those with neurogenic orthostatic hypotension
* those whose parents or siblings had/have PSP
* healthy controls
We’ve listed studies from Stanford, UCSF’s Memory & Aging Center, and UC Davis. All studies listed are open to anyone — you don’t have to be a patient of one of those centers to participate, and your family member doesn’t have to be a patient either. (We did not list studies that don’t recruit from the wider community.)
We’ve provided brief info on the specific studies that are actively recruiting below. Contact the study coordinator to learn what the specific inclusion and exclusion criteria are.
When we say “research study,” we are referring to:
* clinical trials where there is an intervention tested — a drug, therapy, or experimental treatment
* observational studies where participants are observed over time
You can always search for actively-recruiting clinical trials by visiting clinicaltrials.gov. For good background on types of clinical trials, trial phases, why it is so important that more people volunteer for trails, etc, see this Michael J. Fox Foundation webpage:
foxtrialfinder.michaeljfox.org/understanding-clinical-trials/clinical-trials-101/
Short note to the PSP and CBD families who participated in the February 8th seminar we organized with UCSF: MAC researchers attended the seminar and were recruiting for three of the PSP and CBD studies mentioned below, so most will be familiar to you. The clinical trial for PSP and CBS is brand new, and was just posted to clinicaltrials.gov last week. This is the clinical trial that Dr. Boxer mentioned in February as “being in the works.”
Obviously if no one participates in research, we can never make progress towards finding treatment or a cure for these disorders! Please check out the list below to see if you, a family member, or a friend can participate.
Robin
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STANFORD UNIVERSITY
LOOKING FOR THOSE WITH PDD (PARKINSON’S DISEASE DEMENTIA) AND HEALTHY CONTROLS
1-SU: Development of multimodal imaging biomarkers for cognitive dysfunction in Parkinson’s disease
Purpose: Our goal is to better understand brain networks and biological markers associated with memory changes in Parkinson’s disease, and to find ways of detecting these changes before memory problems develop.
Recruiting: Primarily recruiting people with a diagnosis of Parkinson’s who have moderate to severe memory impairment (including PDD), ages 50 and up. Also recruiting healthy control subjects, ages 65 and up.
Principal Investigator: Kathleen Poston, MD, MS. Funded by the Michael J. Fox Foundation for Parkinson’s Research.
Contact: Anisa Marshall [no longer at Stanford]
LOOKING FOR THOSE WITH MSA, PSP, CBD, OR RBD AND NO NEURO DIAGNOSIS
2-SU: Early Differential Diagnosis of Parkinsonism with Metabolic Imaging and Pattern Analysis
Purpose: To develop imaging markers that will more accurately diagnose parkinsonian disorders, such as Parkinson’s disease, Multiple System Atrophy, Progressive Supranuclear Palsy, and Corticobasal Degeneration.
We are recruiting:
1: People with an established clinical diagnosis of PD (diagnosed 2+ years)
2. People with an established clinical diagnosis of MSA, PSP, or CBD
3. Any person with REM Sleep Behavior Disorder (RBD), but no other neurological diagnosis.
Study participants will receive at no cost: brain imaging (MRI and PET), a memory evaluation, and a clinical evaluation.
Principal Investigator: Kathleen Poston, MD, MS. Funded by the National Institutes of Health (NIH).
Contact Info: Hadar Keren-Gill [no longer at Stanford]
UNIVERSITY OF CALIFORNIA SAN FRANCISCO, MEMORY & AGING CENTER
LOOKING FOR THOSE WITH DEMENTIA WITH LEWY BODIES (DLB)
1-MAC: Epileptiform Activity in Neurodegenerative Diseases
Purpose: Assess the frequency of epileptiform abnormalities which we can measure using EEG and MEG. The epileptiform activity we are exploring may be a sign of hyperexcitability in the brain related to seizures, and has been found in animal models of neurodegenerative diseases. Furthermore, in animal models the use of an antiepileptic can sometimes improve cognition and this suggests a potential new therapeutic avenue for individuals suffering from neurodegenerative diseases in the future
Recruiting: Currently recruiting DLB, early-onset variant AD (including PCA and language subtypes in addition to amnestic cases), and behavioral variant of FTD.
Principal Investigator: Dr. Keith Vossel, MD, MS
Contact: Alex Beagle, [email protected], phone 415-476-2906
LOOKING FOR THOSE WITH PSP, CBD, OR CBS
2-MAC: Four Repeat Tauopathy Neuroimaging Initiative (4RTNI)
Purpose: To identify the best methods of analysis for tracking PSP and CBD over time. The results from this study may be used in the future to calculate power for clinical drug trials, as this study aims to identify the most reliable outcome measures. The study will also provide additional information about the relative value of different imaging techniques for diagnosis, and the value of imaging versus other blood, urine, and cerebrospinal fluid (CSF) biomarkers.
Recruiting: PSP and CBD patients between 45 and 90
Webpage: memory.ucsf.edu/research/studies/4rtni
Principal Investigator: Adam Boxer, MD, PhD. Sponsored by the National Institutes of Health (NIH) and Tau Research Consortium.
Contact: Dan (Phi) Luong, [email protected], phone 415-476-9578
3-MAC: Safety Study of TPI-287 to Treat CBS and PSP
Purpose: To determine the safety and tolerability of intravenous infusions of TPI-287 administered once every 3 weeks for 9 weeks (for a total of 4 infusions) in patients with primary four repeat tauopathies (4RT), corticobasal syndrome (CBS) or progressive supranuclear palsy (PSP).
Webpage: clinicaltrials.gov/ct2/show/NCT02133846
Principal Investigator: Adam Boxer, MD, PhD
Contact: Emmeline Chuu, [email protected], phone 415-476-0671
LOOKING FOR THOSE WITH PSP
4-MAC: FamPSP or Familial PSP Study
Goal: To identify genetic risk factors for PSP
Recruiting:
1. PSP patients with a first degree blood relative with a neurological or psychiatric disorder (e.g. PSP or related disorders, dementia, Parkinson’s, psychiatric illness)
2. First degree blood relatives of such PSP patients who are either (a) healthy or (b) might have a neurological or psychiatric disorder. Both affected and unaffected family members are eligible and can provide important information about PSP.
Participants will undergo a neurological exam, cognitive testing, and a blood draw
Principal Investigator: Michael Geschwind, MD, PhD. Funded by the Rainwater Charitable Foundation.
UCSF Contact: Joe Winer, [email protected], phone 415-476-2909. (Other study sites are UCSD and UCLA.)
5-MAC: Sleep in PSP
Purpose: To characterize sleep and daily activity patterns in individuals with PSP; to identify sleep as a biomarker for disease onset and progression; and to develop an intervention to improve sleep and daily activity patterns.
Recruiting: Individuals with a diagnosis of PSP
Principal Investigator: Thomas Neylan, MD
Contact: Christine Walsh, PhD, [email protected], phone 415-476-8676
UNIVERSITY OF CALIFORNIA DAVIS
LOOKING FOR THOSE WITH MSA OR NOH
1- UCD: A Clinical Study of Patients With Symptomatic NOH to Assess Sustained Effects of Droxidopa Therapy
Recruiting Parkinson’s Disease, Multiple System Atrophy, parkinsonism, etc. with symptomatic neurogenic orthostatic hypotension (NOH).
Webpage: clinicaltrials.gov/ct2/show/NCT01927055
Principal Investigator: Lin Zhang, MD, PhD. Sponsored by Chelsea Therapeutics.
Contact: Virina De Jesus, CCRP, senior clinical research coordinator, phone 916-703-9174, email [email protected]