Radicava vs Nurown trial? Seeking perspectives

Michael_67

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Hi All,
I am seeking PALS perspectives since I am getting different opinions from different neurologists. I may have a chance to enroll in the Brainstorm clinical trial. My current thinking is that having only a 50% chance of getting NurOwn is not worth giving up the option of Radicava since I am newly diagnosed and never tried it. Also hoping the upcoming platform trials will provide better odds. If any of you think a 50% chance at NurOwn is better than a 100% chance at Radicava, I’d love to hear your reasoning. Or general opinions and experiences with Radicava or the Nurown trial also greatly appreciated Thanks!
- Michael
 

Nikki J

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That is a tough question.

How close are you to the trial site? How much of a burden would the visits be?

For Radicava do you have a sense of how closely you fit the characteristics of the group that benefited in the trial? Do you know if you can have home infusions or do you live close to an infusion center

Nurown is hopeful but as you say 50/50 and no open label extension either

The platform trial won’t be starting until 2020 sometime I was told. Yes your odds of placebo are lower and the drugs in the trial have been judged promising by a panel of ALS experts who chose them. They don’t have the clinical trial history that NurOwn does though.

If I were choosing Nur Own vs platform it would be Nurown if choosing today

Radicava is less clear as some people appear to benefit others don’t.

There are threads about both Nurown and radicava. You might want to search a browse those too
 

Michael_67

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Thank you Nikki for such a thoughtful and helpful reply! I will take all those questions into consideration and check out the threads you mentioned.
Take care,
Michael
 

lgelb

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The Canadian systematic review concluded that most newly dx'd PALS who are functionally independent should be offered Radicava, absent respiratory compromise and/or demonstrably slow progression.
 

Michael_67

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Thank you for this info lgelb! Very good to know!
 

Michael_67

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That is a tough question.

How close are you to the trial site? How much of a burden would the visits be?

For Radicava do you have a sense of how closely you fit the characteristics of the group that benefited in the trial? Do you know if you can have home infusions or do you live close to an infusion center

Nurown is hopeful but as you say 50/50 and no open label extension either

The platform trial won’t be starting until 2020 sometime I was told. Yes your odds of placebo are lower and the drugs in the trial have been judged promising by a panel of ALS experts who chose them. They don’t have the clinical trial history that NurOwn does though.

If I were choosing Nur Own vs platform it would be Nurown if choosing today

Radicava is less clear as some people appear to benefit others don’t.

There are threads about both Nurown and radicava. You might want to search a browse those too
Hi Nikki,
I had a question I am hoping you might know the answer to. I am still on the fence about the NurOwn trial, but the administrator called to confirm I’m coming to the initial screening next week. In truth I need more time to decide. Do you know if a person can drop out of a trial even if they at first agree to participate? Thanks for any info you have!
Best,
Michael
 

Nikki J

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Yes. You can always drop out at any point. It is in the consent of every single study. If you started the study and had the cells taken and then dropped out part way through I would hope it would be a compelling reason as you had taken a slot and used scarce resources ( expensive too). But to go to an initial screening read the consent and say no would be reasonable
 

lgelb

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If you are being screened, ask your questions, but also make it clear that if you sign on, you will do so with a full heart. If you look like a waffler, they will find a reason to reject you because everyone works to minimize missing data in a registration trial, as well as the waste that Nikki mentions.

Best,
Laurie
 

Michael_67

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Thank you Laurie! I hear what you’re saying.
 
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