PSP Association

Biogen/BMS Anti-Tau Phase 2 Trial Recruiting

All, there was a post a several days ago from a caregiver mentioning that their husband was participating in an Abbvie Phase 2 trial of an Anti-Tau medication that, at least anecdotally, was providing relief from some symptoms and possibly slowing the disease progression. My wife is being screened to participate in a similar Phase 2 trial for a Biogen medication that is also supposed to remove excess tau from people suffering from PSP. The study is named "PASSPORT - Study of BIIB092 in Participants With Progressive Supranuclear Palsy"

Here is the link to the study:

clinicaltrials.gov/ct2/show...

The study is still recruiting. The drug was well tolerated in the Phase 1 trial, and showed considerable reduction of tau in the cerebellar spinal fluid of participants.

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

We are thrilled to be a part of this and are feeling hopeful for the first time in many months. Anyone who is interested can go to the link to find out more. You can also google BIIB092 .

Wish us luck!

6 Replies
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Thank you for this. Sadly there is no where remotely near us in our part of the UK.

Good luck

Ali B

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Dickwin!

Wonderful news.

Even though it is too late for us and we live in the wrong country - It is great to know this work is going on.

Thanks for posting - It has cheered me greatly.

Wishing you all the luck in the world.

Best

Kevin

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That is really good to know. Perhaps someone on here can be part of one of the trials now they are aware of it? It sadly is too late for my husband but I will be so delighted if they find anything to halt this awful condition.

We really will have a party then? Good luck to you and your loved one.

Marie x

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Dickwin, you and your wife are in my prayers. I see that you have posted 5 times, but I missed all those postings. I came across a share of yours on April 4, 2018. You stated that your wife was to start the Biogen study the next day. That share motivated me to research you on the PSP site....that share (and that a friend I met on this site husband started on the Biogen trial). I have encouraged her to reach out to you.

I reside in Los Angeles, CA (the San Fernando Valley). My son did too, in his own home. My son was just 52 when the first symptoms of PD/PSP appeared....Double Vision, slurred speech, Anxiety, and then soon a neck he could not move. I posted his story on PARKINSONS TO PSP.

My son died on May 4, 2017, 5 weeks after turning 55. He requested to NOT be fed. He had undergone two bouts of aspiration pneumonia, a seizure soon after, a PEG was installed, followed by severe constipation, etc, and was given little hope by the Neurologists on his future. On the heels of his death came out info on the clinical trials. I carry sorrow, despair and guilt for not trying to talk my son out of his decision. I miss him terribly.

I will look for your postings on how your wife is doing. It would be helpful, if time provides, for you to post a week or so after each appointment. I think to just hear of the trial initiation, the first infusion, etc, would give great hope to those of us on this site.

Margarita from the warm sunny and wonderful city of Los Angeles

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Margarita, thank you for the prayers. My wife and your son share some similarities. She was 52 when diagnosed last summer, a re-diagnosis from an earlier Parkinsons DX. She, too, is a teacher. Her first symptoms, 4 or more years ago, were with terrible foot and leg pains. She could no longer stay on her feet at a blackboard. She must have seen 3 different podiatrists with no help. Then the freezing of gait started, with scary abrupt falls, then her writing went south, then her speech, general bradykinesia, stiffness in her neck and blepharospasm. Recently, she has begun to get cramping in her hands and forearms, and most recently, she started to finally exhibit the early stages of gaze palsy. She has been remarkably free of that primary characteristic of the disease for a long time. But as you know, the disease attacks everyone differently. Its primary trait may be its variability.

My wife is in the BioGen study (was BMS, but BMS sold their Neuro division to BioGen). She received her second dose today. One nice thing so far is that the drug has been well tolerated. I cannot say I saw any improvement in month 1, but what this medicine is designed to do is arrest progression. There is nothing yet that can repair neural degeneration. So I don't know if we can expect any 'result' for 6 months or more, and then there is the 33% possibility that she is receiving placebo . But we do have some hope for a better outcome, and that is more than anyone has had with this disease at any time before, so we are grateful.

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Dickwin......I just now saw that you had responded to my questions. I never got an email notice, but for some reason decided to look at your postings and shares. THANK YOU!!!

If perchance you do see repairs please post for the rest of us. My son is dead, but I get such comfort from any hope....and the BioGEn and Abb-Vie are both encouraging to me.

I just spent the weekend with my daughter ( she and her brother were 15 months apart) and my sister. They flew in from Oregon and Texas. It was comforting to me....little sharings....my daughter said she was reminded how in conversations with her brother (when Jeff was trying to counsel her) he would tell her "Well I certainly can't take her/him seriously". Just that little sentence would help her move on.

Prayers for you wife and your kids and YOU!!!!

Blessings, Margarita

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