Phase 3 Study of Dexpramipexole iscurrently recruiting participants

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smwelder

Distinguished member
Joined
Dec 7, 2010
Messages
186
Reason
PALS
Diagnosis
11/2010
Country
US
State
CALIFORNIA
City
san diego
the trial is nocurrently recruiting participants
 
Its just about to get underway. Some forum members have been given the information. I spoke to a chap from Biogen Idec and he said it was about to start recruitment.
 
Recruitment is starting- I have made it through the phone screening at Mass General and go for the in-person screening next Friday. Fingers crossed!
Sue
 
Way to go Sue. Fingers crossed.
 
I find it so frustrating that most of the trials set a limit on how long you have had symptoms as criteria for getting in. Les has an onset of symptoms as 10-07, so the majority of trials are a no go for us. NOT FAIR!
 
Keep us posted!
 
what was asked and said during phone interview?
 
Good luck Sue! I hope you get in.

I've contacted the clinic in Minneapolis that will be participating in this study. I was told last week that they are still undergoing training on it, and that I will get a phone screen when they are ready. I'm hoping to hear back this week.

- S
 
Phone interview was mostly basic health history-- the stuff we've all been asked a million times-- have you had heart problems, high blood pressure, seizures, cancer, etc. etc; any prescription allergies; when were you diagnosed; can you swallow pills; pre-menopausal women have to be on good birth control; all very routine. Since my health until ALS was exemplary, it was a pretty boring interview!
Good luck, Steve, and others.

Sue
 
I started the study this week. So far I don't really feel any different, either positive or negative.

As other people join the study, I would like to make contact and compare notes. Is there anyone else taking the study now?
 
A lot of times on Patients like me, they track the studies.
 
I am trying to get in also. have made contact with a clinic and am being screened. Good luck to everyone and I hope it helps all in our shoes in the future.
 
Thanks for jogging my memory, I just called Mass General again to make an appointment. I did the pre-screen over the phone already, and they emailed me the forms to sign. Sue, what did they do at your first appointment last Friday?
 
The screening appointment at MGH was a lot of history questions (health history, ALS history, current meds & supplements, etc.), an ALS-FRS, a very basic physical exam, breathing test, and blood and urine samples. And reviewing and signing the consent forms. Took 2 1/2 hrs. I returned Tuesday and started the trial. Like John, I haven't noticed anything different, positive or negative. MGH is the first center to be enrolling subjects; I believe a couple of others have just started. Hoping for the best for all of us!
Sue
 
Hi All, I have an appointment for May 23 at Mass General, and hopefully will be starting the trial...
 
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