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 study coordinator Cristine (Cris) Lam Tel: 858-822-5751 or via email cflam@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 study coordinator Cristine (Cris) Lam at 858-822-5751 or cflam@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 ABBV-8E12 in PSP ("Arise Study)A Study to Assess Efficacy, Safety, Tolerability, and Pharmacokinetics of ABBV-8E12 in Progressive Supranuclear Palsy

Study Type: Interventional 

Are you or your loved one falling and experiencing voice changes and the slowing of Movements? 

We invite those 40 years of age or older who are experiencing symptoms of Progressive Supranuclear Palsy (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. Interested individuals will be evaluated to determine if participation in the Arise Study is right for them. Those who qualify will receive study-required medical care and monitoring 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, a dedicated caregiver must be able to attend ALL visits with the study participant. Reimbursement for travel may also be available. To learn more, contact study coordinator Robin Ellam at Tel: 858-822-2546 via email: rellam@ucsd.edu or visit AriseStudy.com

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 movementdisorders@ucsd.edu. Enrollment on hold.

 

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, Patty Torres at 858-246-2537 or patorres@ucsd.edu.