Trial Study : CurePSP New Clinical Trial... - PSP Association

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Trial Study

goldcap profile image
11 Replies

CurePSP

New Clinical Trial for PSP

CN002-003

Greetings,

CurePSP and our newly formed Patient Engagement Program (PEP) are excited to announce a new clinical study for patients with a diagnosis of Progressive Supranuclear Palsy (PSP).

The purpose of this study is to see how safe and well tolerated the study drug is at different amounts and to measure the amount of study drug in your blood and cerebrospinal fluid (CSF) after taking the drug. The study will also determine how your immune system reacts to an investigational drug called BMS-986168, and checks other areas of health and disease, such as your daily activities, memory and thinking that may be related with the study drug.

This study will also measure the effect of the study drug on the amount of a protein called Tau present in your cerebrospinal fluid. Tau is a protein normally found in brain cells that is thought to play a role in causing PSP. A key feature of PSP is the build-up of Tau in particular brain regions. Some forms of Tau that are released from brain cells may lead to the spread of Tau in the brain and cause injury to brain cells. BMS-986168 is an investigational antibody hypothesized to specifically bind and remove these forms of Tau.

The length of time for individual participation to complete the trial can last up to 24 weeks following the 6-week screening period. If you qualify for the study, you will be randomly assigned (like a toss of a coin) to receive either study drug or placebo (no active study drug), so there is the possibility that you would not be receiving study drug. After you have completed treatment on this placebo-controlled study, you may qualify to be invited to enter a new study after completion of the week 12 visit where you will receive the active study drug and not placebo. If you do not qualify or do not want to participate in the new study, you will be asked to return for a follow-up visit at week 24.

To participate in this study you must have a reliable caregiver who can come with you to all study visits and who is able to help monitor your health and any medications that you take while you are in the study.

All study related medication or placebo and procedures will be provided at no charge to you.

For more information on this program, please visit ResearchstudyPSP.com or call 855-907-3286.

Thank you for your time and consideration.

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goldcap
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11 Replies
Heady profile image
Heady

Here's hoping they get good results!

Lots of love

Heady

peterjones profile image
peterjones in reply to Heady

I second that matey peterjones queensland Australia pspbloke

jillannf6 profile image
jillannf6 in reply to peterjones

I AGREE WIHT WHAT PETER JONES HAS SIAD

JILL F

JOURGIA profile image
JOURGIA

Hello,

Where does this study take place?

Thanks,

Hélène

abirke profile image
abirke

Thank You Goldcap. I just received this research info last week. i am tryign to convince hubby to do it. Clsoest research facility is 6 hours away for us! and he's been kinda not doing great but I hope others take note and consider the idea.

AVB

goldcap profile image
goldcap in reply to abirke

Our doctor said he would not qualify. Think he is too far gone...

abirke profile image
abirke in reply to goldcap

bummer They probably want newly diagnosed patients. Wait YOUR dr?,

does he have a connection to this research? hmmmm. Well I see what your dr is saying: We tried to enroll in one early in Spring(?) and he had to be able to walk independently...not a problem...occasional walker....but now is am by his side EVERYHEREI and have not had the time nor initiative (I'M warn out save to type to you guys) to follow up on this research...I think I will ask what the criteria is....goldcap, there may be hope for us yet! like the song says, "don't stop believing; your dr, your own intuition; that there is hope right now.....You know, the stuff that helps us get through in life...

Don't Stop Believing,

AVB

goldcap profile image
goldcap in reply to abirke

It's a She and the facility where she practices are participating in the study but I do believe they are conducting them in other cities and countries as well. My husband can no longer walk unassisted either. He can barely stand up with help. So now I know why he did not qualify.Thank you for that piece of information. I also think the study is double blind which means you will not know if you are getting the drug or a placebo. When it is over if you were not receiving the drug you will be offered the real thing. Unfortunately PSP is so unpredictable in it's progression rate by the time the study is over you may not be eligible anymore. I guess you have to weigh out the time involved and the proximity to where you live. To have to travel hours away without the certainty of knowing you are receiving the drug that's a tough decision. Probably why they have very specific milestones. Which is weird because I have heard of people with PSP whose walking never deteriorated but had a shorter lifespan than someone who had a quick progression from walker to wheelchair. There is another study which is to measure the rate of brain atrophy which will not benefit the participants but will help the researchers better understand the progression of the disease which will benefit those who are presently asymptomatic. Hope this was somewhat helpful.

Take care JayneGC

abirke profile image
abirke in reply to goldcap

Wow thanks Jayne, that was a lot of info. I am envious that the clinic your husband goes, not only knows what PSP is, but is participating in a study for the disorder!!!!Wow cool I don't suppose you are able to meet all who are in the study in that you might have some camaraderie...

AVB

oh and I never heard that certain time of milestones may be indicative of lifespan.....the brain is a complex entity...so much to learn

jillannf6 profile image
jillannf6

Yes I hope i to goes well

Lol JIŁ

kryste profile image
kryste

Already signed up

Thanks hugs Kryste

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