4-Repeat Tauopathy Neuroimaging Initiative – Cycle 2 (4RTNI-2)

Observational Study

What is the study about?

This study follows people with progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD) for up to 2 years and compares their brain changes with healthy volunteers of the same age. Researchers hope to learn more about how patients with PSP and CBD progress over time and which measures are best for tracking change and predicting progression. Various measures including brain imaging, cerebrospinal fluid analysis, eye tracking, blood markers and neuropsychological testing will be measured.

Eligibility– Who can participate?

Participants must:

Either have no known history of brain disease (i.e., be a healthy volunteer) or have a diagnosis of corticobasal syndrome or degeneration (CBS or CBD) or progressive supranuclear palsy (PSP)
Have a reliable study partner who has frequent contact with participants, can come to study visits and provide information about them
Be willing and able to undergo testing procedures and follow-up visits
Be able to walk five steps with little help

Time requirement

Participants and their caregivers are asked to come every 6 months for up to 24 months. Visits can be done in-person, remotely or through a combination of remote and in-person (hybrid) visits. Each in-person visit will take 2-3 days to complete. Remote visits via video conference can be completed in 4-5 hours and the hybrid visit will take 4-5 hours of remote and 1 full day of in-person visits. Participants will be reimbursed for the time and expenses incurred with the study visits (travel, parking, food).

TDRA Investigator

Dr. Carmela Tartaglia

More information

https://clinicaltrials.gov/ct2/show/NCT02966145