Clinical trials for PSP

[Abehanan]

Hi, my dad has PSP - was wondering if anyone knew what’s the latest on the clinical trials for PSP?

[Mikey12345]

Sorry your dad has this diagnosis. It stinks.

I wish I had information for you but I don't. Living in PA, I would call Hospital of the University of Pennsylvania. My husband was in the CBD study there and I know there are other studies going on. I would think calling the largest teaching hospital in the area could get you information.

Good luck with your search and with your dad.

Liz

[Abehanan in reply to Mikey12345]

Thanks Liz.

[Kevin_1]

Hi Abehanan

I am vaguely aware of this one which I think is being undertaken in the US and Canada

clinicaltrials.gov/ct2/show...

If you are in the UK you might want to contact the PSP Assoc.

pspassociation.org.uk/resea...

I hope this helps a bit.

Hopefully other folk will come back with more.

[Abehanan in reply to Kevin_1]

Thanks Kevin - yes I am in the UK - I will contact PSP association. Thank you very much.

[skoe]

Hi Abehanan,

As Kevin has suggested please contact the PSPA HELPLINE on 0300 0110 122

The HELPLINE can provide both details and introduction to our PROSPECT Clinical Trials ( longitudinal and light touch) plus any other questions that you and your father may have.

Regards

Simon

[Abehanan in reply to skoe]

Thanks Simon. I am calling them tomorrow. I will let you know how it goes.

[Hidden]

In the US: clinicaltrials.gov/ct2/resu...

[Dickwin]

Abehanan,

My wife, who was diagnosed with PSP last summer, is receiving her first treatment in the Biogen study tomorrow. This is the same study Kevin linked to:

clinicaltrials.gov/ct2/show...

There is also an AbbVie study going on with a similar drug. These drugs being tested are monoclonal antibodies. The drug is supposed to attach itself to excess TAU in the PSP sufferers blood and spinal cerebellar fluid and flush the excess TAU from their systems, thus halting or slowing the disease progression.

PSP patients (and many other movement disorder sufferers) overproduce the brain protein TAU, which causes it to mis-fold itself and bunch at the base of neurons, killing off the neurons. Most doctors who study this disease believe this is the primary reason for the diseases progression.

We live in Chicago, which has three major research hospitals. Our neurologist is at Northwestern, and is committed to research, which is why we chose her. We were very vocal about letting her know we were up for participating in clinical trials, and she helped to make it happen.

I believe these trials are being run in Europe, Asia, Australia, New Zealand, the U.S and Canada. Try googling monoclonal antibodies PSP Trial Biogen Abbvie. You can find more info. And let your Doctor know of your interest. The squeaky wheel gets the oil.

Goodluck.

Dick

[Abehanan in reply to Dickwin]

Hi Dick - this is extremely helpful - thanks very much for taking the time to explain this. I am based in the UK so will check where these trails may be taking place. Would you be able to let me know how the trails are affecting your wife’s situation? Wish her all the best and I really hope it works !!! - Anish.

[Dickwin in reply to Abehanan]

Anish,

Thank you for the well wishes. I will update on this board and let you know how things are going. So far, I can say that she has tolerated the drug and there have been no negative issues or side affects. That is the first hurdle, and we seem to be getting past the early stages on that one. Regards, Dick

[cinkerfoot in reply to Dickwin]

Hi, My mom is in the Abbvie trial and has had four infusions. I am not seeing any improvement. I am beginning to suspect she is one of the unfortunate ones getting the placebo. Please keep us posted on how your wife does with the Biogen drug. I hope you see good results.

[cinkerfoot]

My mom is in the Abbie trial and we go to the Mayo clinic in Arizona from northern California. She has had four infusions and we go back in 2 weeks. There are sites all over the country...go to the clinical trials.gov website to see if a site close to you is recruiting.

[Abehanan in reply to cinkerfoot]

Hi Cinkerfoot, thanks very much for the information. Has the infusions worked with your mom’s condition? What’s your feedback? I hope she sees some improvement. Thanks very much for the information - Anish

[cinkerfoot in reply to Abehanan]

I have to say that I don't think the infusions have helped.

1/3 of the patients in the trial get a placebo, 2/3 get the real thing. I am beginning to suspect she is getting the placebo. But, we make the best of it. We get to stay in nice hotels and eat good meals out...and the drug company pays for it all. It is getting fairly difficult to travel with her by myself. She is still walking, but she is pretty wobbly.

[bsilverman]

We have participated is a trial at UCSF taking Sasalate. Since the study ended we have seen a faster decline. Maybe it worked a bit!

We expect to start another study soon at UCSF with infusions of something. We called UCSF directly to get involved but these same studies are listed on the website listed previously and take place in a number of different locations.

It at least let’s us feel like we are trying and not fully surrendering to this nasty disease. Good luck to you.

[cinkerfoot in reply to bsilverman]

Are you in Northern CA? My mom has PSP and we live in Auburn. Going to Mayo in AZ for a drug trial thru Abbvie. I saw some of the ones at UCSF....I saw one where they were going to give blood transfusions to PSP patients from "healthy young males". I thought that was a bit odd. But heck, maybe it will help!

[bsilverman in reply to cinkerfoot]

Yes. We are in Walnut Creek. We’ll know more about this study soon. Auburn is still a drive but there are 4 of us in the East Bay that meet for lunch once a month if you ever want to make the trip and join us.

[cinkerfoot in reply to bsilverman]

Thanks for the invitation. Please let me know when your next lunch is planned and I will see if I can make it. Do the patients attend too or just the caregivers?

[bsilverman in reply to cinkerfoot]

Just caregivers. We have considered bringing patients but they don’t seem interested. We met at a different Support group that meets regularly in San Mateo. They have a meeting this Sunday evening if you are interested. It’s run by Robin Riddle. It’s a long way but people come from all over. One woman, who’s husband has passed, comes often, from Santa Rosa.

Is there another way I might contact you.? I suppose this can work just fine.

[cinkerfoot in reply to bsilverman]

Not sure I could make it this Sunday...the weather is supposed to be pretty bad this weekend. But please let me know when the next one is planned. My cell phone is 916-479-2433.

[Dickwin in reply to bsilverman]

bsilverman,

UCSF appears to be the epicenter of PSP Research in the US. I am sure they would be conducting at least one of the current trials there.

Dick

[Abehanan]

Thanks very much BSilverman!

[Dickwin]

All,

We are just back from a long day at the hospital. My wife received her first infusion of the Biogen anti-tau drug (or 33% chance of placebo). I noted our conversation here to the study coordinator at Northwestern, and I asked her if they are still taking in new candidates. She said that they are taking new candidates. She has three in Chicago, and is looking for at least two more there. But she said a person can apply anywhere that the trial is being held and that all hospitals conducting the study will be accepting new participants until August 2018.

Here are the requirements to participate:

Ages Eligible for Study: 41 Years to 86 Years (Adult, Senior)

Sexes Eligible for Study: All

Accepts Healthy Volunteers: No

Criteria

Key Inclusion Criteria:

Participants with probable or possible PSP

Able to ambulate independently or with assistance

Able to tolerate MRI

Have reliable caregiver to accompany participant to all study visits

Score greater or equal to 20 on the Mini Mental State Exam (MMSE) at screening

Participant must reside outside a skilled nursing facility or dementia care facility at the time of screening and admission to such a facility must not be planned

Key Exclusion Criteria:

Presence of other significant neurological or psychiatric disorders

Diagnosis of amyotrophic lateral sclerosis (ALS) or other motor neuron disease

History of early, prominent rapid eye movement (REM) sleep behavior disorder

History of or screening brain MRI scan indicative of significant abnormality

Known history of serum or plasma progranulin level less than one standard deviation below the normal patient mean for the laboratory performing the assay

Hope this helps.

[cinkerfoot in reply to Dickwin]

For others who might be interested, the Abbvie drug trial has almost identical inclusion criteria.

[Kevin_1 in reply to Dickwin]

Good luck