Research Studies: Corticobasal Degeneration & Progressive Supranuclear Palsy

Advancing Research and Treatment for Frontotemporal Lobar Degeneration (ARTFL,  Enrolling)

This research study is looking to learn more about cognition and/or movement problems in patients with frontotemporal dementia

Patients who qualify are those who have been diagnosed with the following or have a blood relative who is diagnosed with the following:

  • Sematic variant Primary Progressive Aphasia (PPA)
  • Progressive Supranuclear Palsy (PSP)
  • Frontotemporal Dementia with Amyotrophic Lateral Sclerosis (FTD-ALS)
Participation includes an evaluation of cognition, a physical examination, questionnaires, and a sample of blood. Patients may also be asked for an MRI scan or cerebrospinal fluid. If FTLD runs in the patient's family, they may be asked to return in one year for a follow-up appointment where assessments will be repeated. For more research study please contact our research coordinator Kim Thomas Tel: 858-822-5751 or via email kkt008@ucsd.edu.

For more information on all participating sites, please follow this link: https://www.rarediseasesnetwork.org/ARTFL/index.htm

Atypical Parkinsonism: 

  • Corticobasal Degeneration

Four Repeat Tauopathy Neuroimaging Initiative (4RTNI-2) (active)

This study is evaluating the best method of analysis to track patients with Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) over time. During this 2 year-long study, patients will be asked to come in for 3 study visits (at baseline, 6 month, 12 months, and 24 months) to complete a neurological examination, study partner questionnaires, memory testing, lumbar puncture, biospecimen collection, MRI, and a PET scan. Patients with PSP or CBD between the ages of 45 - 90 with a reliable study partner are eligible. For more information on this study, please contact Veronica Lopez at 858-822-5786 or v1lopez@ucsd.edu.

For more information on all participating sites, please follow this link: https://www.rarediseasesnetwork.org/ARTFL/index.htm

Currently enrolling

  • Progressive Supranuclear Palsy (PSP)

Assessing Falls in Parkinson's Disease and other Movement Disorders

This research study is looking to validate a wearable multi-modal system in patients with an increased risk of falling. This technology could allow physicians to monitor and understand what causes certain patients to fall. Participation will consist of one study visit and two at home sessions with the multi-modal monitoring system. Patients with movement disorders may qualify for this study if they are over 50 years of age and have a history of falls. Enrollment on hold.

Epidermal Electronic System (EES) Sticker Sensory Studies

Dr. Litvan is studying the applicable uses of a sticker sensor called epidermal electronic system (EES) sensor. There are three uses currently being studied:

This sub-study is studying if this sticker sensor can be used to find out more about processing in the brain. The sticker sensor will be placed on the forehead and be connected to a portable EEG to measure their brain waves while viewing visual stimulus on a computer screen and/or listening to auditory stimulus. Patients may be asked to take this system home and complete 15 minutes of testing a day for a week. Currently enrolling.

Prior studies have demonstrated a hyper-activation of a laryngeal muscle at rest in patients with PSP with needle-based EMG. This sub-study is studying if this EES sticker sensor and standard transcutaneous EMG electrodes can replicate this study in a non-invasive manner. During this study, the sticker sensor will be placed on the throat to record muscle activation while the subject is making different phonations. Currently enrolling.

For more information on this study, please contact Lisa Damron (858) 855 5873 or email ldamron@ucsd.edu. 

Familial PSP Study

This research study is hoping to identify gene variation involved in PSP. Patients diagnosed with PSP and who have a living blood relative with a neurological or psychological disorder may be eligible for this study. For more information on this study, please contact (858) 822-MOVE or email mdcresearch@ucsd.edu.

Currently enrolling.

ABBV-8E12 in PSP ("Arise Study - Enrollment on a waitlist)A Study to Assess Efficacy, Safety, Tolerability, and Pharmacokinetics of ABBV-8E12 in Progressive Supranuclear Palsy 

Study Type: Interventional

We invite those 40 years of age or older who are experiencing symptoms of PSP to see if they may qualify for the Arise Study. The purpose of this research study is to test the efficacy and long-term safety and tolerability of an investigational study medication in patients with PSP.

Each person will be evaluated to determine if participation in the Arise Study is right for them. Those who are able to participate will receive the investigational study medication or a placebo (inactive drug) and study-related medical care at no cost. Taking part in this research  study is voluntary, and you or your loved one can stop participating at any time. Please note that a dedicated caregiver must be able to attend visits with the study patient. reimbursement for travel may also be available. 

Enroll is currently on a waitlist

To see if you may qualify, please visit www.arisestudy.com, or contact Robin Ellam at (858) 246-2546 or rellam@ucsd.edu.

The Passport Trial is recruiting patients with Progressive Supranuclear Palsy (PSP)

A Randomized, Double-Blind, Placebo- Controlled, Parallel- Group Study to Evaluate the Efficacy and Safety of Intravenously Administered BMS-986168 in Participants with PSP.

Study Type: Interventional

We are recruiting patient with PSP to participate in our clinical trial. Although some medications may help relieve symptoms associated with this disease, none have been proven to slow or halt the disease itself. Researchers are working hard to develop new investigational treatments for PSP through clinical trials. The PASSPORT trials is just one such trial; its aim is to find out if a new investigational study drug can slow the progression of the disease.We can find our if a drug is effective by giving one group of participants the investigational study drug and another group of participants a placebo (which looks the same but contains no active drug) and comparing the results.The main trials lasts just over a year. It is divided into a 6-week screening period (when all the necessary assessments will be carried out to check t hat you are eligible to participate), and a 52- week double-blind dosing period, (when either the investigational study frug or placebo is given), with clinic visit approximately every 4 weeks. Once this portion of the trial concludes, there will also be an opportunity ti participate in an open--label dosing period.

As safety is our top priority, participants will visit the trial clinic approximately every 4 weeks throughout the trial to have their health monitored. All trial-related medications, tests, and assessments will be given to participants at no cost. Reimbursement for travel and other trial-related expenses may be available.

Participating in a trial in entirely voluntary and will in no way affect other healthcare services you receive.

If you'd like to find out more about the PASSPORT trial, please visit www.passportstudy.com

You may also contact the Study Coordinator, Cindy Lawrence at 858-246-2537