FAQs

ANY QUESTIONS ABOUT THE PASSPORT CLINICAL TRIAL?

"Supranuclear Palsy" refers to the eye movement problems that people with PSP experience. These problems are caused by a part of the brain that stops working properly, leading to difficulty in moving the eyes.

You may be eligible for reimbursement for your time and travel.

All PASSPORT clinical trial-related procedures and treatments will be provided to you at no cost.

The Clinical Trial team will understand that this is sometimes unavoidable. If this happens you will be asked to contact the clinical trial site/coordinator as soon as possible so that they can reschedule.

If your regular caregiver goes on holiday or is ill (in other words, a temporary absence) or can no longer participate, please contact your clinical trial site/coordinator to discuss your options.

Your involvement in the PASSPORT clinical trial is entirely voluntary and you are free to leave at any time without your usual healthcare being affected.

Whilst some treatments may help with the symptoms of PSP, there are currently no approved treatments available to specifically treat PSP, which is why we are conducting the PASSPORT clinical trial.

Both PSP and Parkinson's disease cause stiffness, movement difficulties, and clumsiness, but PSP is more rapidly progressive as compared to Parkinson’s disease. People with PSP usually stand exceptionally straight or occasionally even tilt their heads backward (and tend to fall backward). Those with Parkinson's disease usually bend forward. Problems with speech and swallowing are much more common and severe in PSP than in Parkinson's disease, and tend to show up earlier in the course of the disease. Eye movements are abnormal in PSP but close to normal in Parkinson's disease. Both diseases share other features: onset in late middle age, bradykinesia (slow movement), and rigidity of muscles. Tremor, very common in individuals with Parkinson's disease, is rare in PSP.

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A needle is inserted into the lower part of the spine and a sample of spinal fluid, called cerebrospinal fluid (CSF), is taken. These samples will be sent to the clinical trial center laboratory for analysis.

  • You may be asked to change into a hospital gown for this procedure. The lumbar puncture should take approximately 30 minutes.
  • Before the lumbar puncture needle is inserted, the skin at the base of your spine (lower back area) will be cleaned with an antiseptic solution and injected with a local anesthetic to numb the area.
  • The trial investigator will gently insert a hollow needle between two of the bones (spinal discs) in your lower back. Because you have been given an anesthetic this should not cause any pain, but you may feel some pressure as the needle is inserted.
  • Once the needle is inserted, the CSF can be collected. After this, the needle will be removed and a bandage or dressing will be put on your back.

Your investigator will be able to give you most of what you need to know about PSP; however, you may also find these organizations provide some useful information:

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