We were in the AbbVie 562/563 study and just received this bad news below. Anyone here completed the 12 months and were actually on the medication? If so, did you see improvements in stopping progression?
I want to thank you for your time and dedication of working with Kerwin Research to develop treatments for PSP. Unfortunately, we have been contacted by AbbVie, the Sponsor of the study you are participating, and based upon an internal analysis they have decided to stop the study at this time. We do not have any specific information on the basis of the decision except that they based it on a futility analysis and not due to safety reasons.
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ForkLover
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Seem to remember news of Abbvie cancellation some months ago. Assume it was the same study - or maybe this is another?
There seem to be a number of other lines of inquiry and research, so don't give up hope.
I heard of another today, although have no details of who or where.
Someone has found that "gene cancellation therapy" is helping sufferers of ameloidosis, which is caused by accumulation of proteins. Suggestion is that the method could help turn off proliferation of other protein accumulation. I wonder if this may be something that may help with clumping of tau protein - but is no doubt some distance away in its development.
No doubt there may be someone on this site who is able to Google the details and post!
Thank you for naming the condition which I couldn't recall. They have already agreed to use it on the NHS for that particular condition. However researchers are really excited about it's potential. They mentioned looking to use it in cases of Dementia but one of the reports immediately made me think of PSP. It seems that proteins are involved in amelodosis too. So if they can stop the proliferation in that condition it follows it could be used in other conditions?
Fingers crossed that it will work. The NHS has not agreed it's use on any other condition.
However the excitement amongst doctors was something I haven't seen before. They have always said if they find a cure for Alzheimer's they will find a cure for PSP. Here's hoping!
Same thing happened to my wife about 7 years ago with a drug trial called Davenutide. After her taking it for almost a year, we soon found out that the drug was a failure. But as with most great discoveries, it takes numerous failures before success is achieved. I know this is truly heart-breaking. Thank you and your family for participating and helping find a cure for this horrible disease.
What a wonderful surprise to see that you are still popping in and out! How's it going Dan? My life, after 2 1/2 years is starting to pick up, though I still miss Steve dreadfully, I now have a "friend" who is putting a smile back on my face!
Missing you too, old friend. Sending very large hug and much love.
Good for you darling! Yes I still miss Kim. Her passing was 3 years ago this past week. I still grieve a lot and haven’t even begun to think of another woman. Will probably stay single for the rest of my days. But my 85 year old dad is living with me and I stay busy with him. He’s developed a little dementia but not too bad. And he getting a little more frail and suffers from joint pains. But I love my daddy and taking good care of him. I permanently moved to the Florida coast and right now sitting on my condo balcony watching the huge waves roll in due to Tropical Storm Barry. We don’t expect any damage, unlike Louisiana. Stay well my dear.
My husband was in the second year of the trial, so we know he had started the medication. We never saw any benefit from the drug. Disappointing for all those we love who are suffering from PSP.
My mom was on the study. Almost 2 years. She was receiving the medication. No real improvements but the coordinator did see some improvements. He gave some insight on why. He said that he felt like they were better end points to measure and that they would restart the trial back with those end points. He said what they had set up for measurement of success wasn’t showing anything but he felt like there was significant progress in other areas. I so hoped this would help my mom.
My husband was just two infusions short of finishing an Abbvie study when he died. There were times when we thought it might actually helping, but it was probably just the ups and downs of the disease. I read on here where the study had been discontinued, so I contacted his nurse and she affirmed that it had been stopped as it did not seem to be working. I was heartbroken as I so want a cure to be found so others don’t have to contend with this horrible disease.
I'm based in France & my mom (64yo) has PSP, diagnosis done in mid April 2019, symptoms noticed since 2015 (eye problems), but now she's weak with instability, swalowing issues, depression etc... difficulties to get off bed, but still walks, i sent an email to ABBVIE to enquire about the possibility to take part in their clinical trial in France, the medical cordinator told me on the phone to tell my Dr. to get in touch with the Lab,
Have you been through the ABBVIE/ABBV-8E12 trials ,is it recommended to be part of it ??
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Research studies for PSP
Results of the CoQ10 study
A very involved checkup at UCSF about BMS study drug.
Update on prospect study
New study just out (3/31/23) on natural therapies for tau aggregation (PSP included)
