nodakr144
10-21-2008, 10:30 PM
I came across a press release today announcing the start of a phase I clinical trial for ACE-031, a muscle building compound. It is hoped that ACE-031 will increase muscle mass and strength in those with age-related muscle loss, neuromuscular disease, cancer treatment-related muscle loss and others. The trial is set to take place in Canada, but no additional information on enrollment was included. Anyone else here heard anything about this?
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casinogal
10-22-2008, 11:10 AM
No, I haven't heard anything about it, but I would love to know more. I went to see my family doctor yesterday and so far, with what tests I have had, they have ruled out Lupus, but not MD. I am now waiting for a muscle biopsy. I wanted to start physical therapy, but my doctor advises against it until I get a diagnosis. She is right. I just wish there was something to strengthen my legs as they seem to be getting worse. If you get any more info, please post as I live in Canada.
splivalo
10-23-2008, 02:15 PM
Hi, I also heard about it and you can find more info on the Internet.
Here is some of the info that I found:
Official Title: A Randomized, Double-Blind, Placebo-Controlled, Single-Dose, Dose-Escalation Study to Evaluate the Safety, Tolerability, Pharmacokinetic and Pharmacodynamic Effects of ACE-031 (ActRIIB-IgG1) in Healthy, Postmenopausal Volunteers
Study Start Date: September 2008
Estimated Study Completion Date: April 2009
Here is some of the info that I found:
Official Title: A Randomized, Double-Blind, Placebo-Controlled, Single-Dose, Dose-Escalation Study to Evaluate the Safety, Tolerability, Pharmacokinetic and Pharmacodynamic Effects of ACE-031 (ActRIIB-IgG1) in Healthy, Postmenopausal Volunteers
Study Start Date: September 2008
Estimated Study Completion Date: April 2009
casinogal
10-23-2008, 10:05 PM
I found it on the internet, as well. I live in Canada, so I would like to know where the trials are. I e-mailed the company yesterday, but haven't had a reply yet.
casinogal
11-11-2008, 12:47 PM
Didn't get a reply from company, but the trials are being conducted in Montreal and they are recruiting at this time. I found this info on the net.
Allan1970
11-26-2008, 07:51 PM
any more news?
peachiemom
12-01-2008, 03:14 AM
Casino gal
With Miyoshi Miopathy, they can tell if you have it if your CK level in your blood is elevated. Elevated CK is a signature trait for certain types of MD that can be diagnosed with a simple blood draw. Do NOT fall for the "we need to see the muscle tissue to look for vaccules" line that I did 15 years ago. My Drs. really wanted a sample to send to Dr. Brown so they told me they NEEDED it. When I didn't want to do it, Dr. Brown himself called and I being young and uneducated about the disease participated in a study for Robert Brown, who is big into MM research. Gave tissue samples (2 inch scar on thigh), blood from me and all my family, etc. When I kept calling to see if the study was completed I got utterly blown off. I could not even get a copy of the study sent to me.
Jodie
With Miyoshi Miopathy, they can tell if you have it if your CK level in your blood is elevated. Elevated CK is a signature trait for certain types of MD that can be diagnosed with a simple blood draw. Do NOT fall for the "we need to see the muscle tissue to look for vaccules" line that I did 15 years ago. My Drs. really wanted a sample to send to Dr. Brown so they told me they NEEDED it. When I didn't want to do it, Dr. Brown himself called and I being young and uneducated about the disease participated in a study for Robert Brown, who is big into MM research. Gave tissue samples (2 inch scar on thigh), blood from me and all my family, etc. When I kept calling to see if the study was completed I got utterly blown off. I could not even get a copy of the study sent to me.
Jodie
michigani
12-01-2008, 11:52 AM
Casino gal
With Miyoshi Miopathy, they can tell if you have it if your CK level in your blood is elevated. Elevated CK is a signature trait for certain types of MD that can be diagnosed with a simple blood draw. Do NOT fall for the "we need to see the muscle tissue to look for vaccules" line that I did 15 years ago. My Drs. really wanted a sample to send to Dr. Brown so they told me they NEEDED it. When I didn't want to do it, Dr. Brown himself called and I being young and uneducated about the disease participated in a study for Robert Brown, who is big into MM research. Gave tissue samples (2 inch scar on thigh), blood from me and all my family, etc. When I kept calling to see if the study was completed I got utterly blown off. I could not even get a copy of the study sent to me.
Jodie
Jodie, I'm sorry you had such a negative experience with your biopsy. I actually had a very negative experience with my first neurologist. He was an MS expert and could not deal with my MD. However, I finally had a needle biopsy in 2002 and found out lots. We did 5-6 microscopy tests and 7-8 tissue stains. One revealed a non-miyoshi dysferlin deficiency. (It's not LGMD2B either!) Unfortunately, all tests have been negative for the MD's we suspected but it did show cell necrosis and ragged fibers, etc. And my MD doctor sent me every pathology report. I have a thick notebook with every test result.
I read your other posts. Welcome to the board and keep in touch!
Mark
With Miyoshi Miopathy, they can tell if you have it if your CK level in your blood is elevated. Elevated CK is a signature trait for certain types of MD that can be diagnosed with a simple blood draw. Do NOT fall for the "we need to see the muscle tissue to look for vaccules" line that I did 15 years ago. My Drs. really wanted a sample to send to Dr. Brown so they told me they NEEDED it. When I didn't want to do it, Dr. Brown himself called and I being young and uneducated about the disease participated in a study for Robert Brown, who is big into MM research. Gave tissue samples (2 inch scar on thigh), blood from me and all my family, etc. When I kept calling to see if the study was completed I got utterly blown off. I could not even get a copy of the study sent to me.
Jodie
Jodie, I'm sorry you had such a negative experience with your biopsy. I actually had a very negative experience with my first neurologist. He was an MS expert and could not deal with my MD. However, I finally had a needle biopsy in 2002 and found out lots. We did 5-6 microscopy tests and 7-8 tissue stains. One revealed a non-miyoshi dysferlin deficiency. (It's not LGMD2B either!) Unfortunately, all tests have been negative for the MD's we suspected but it did show cell necrosis and ragged fibers, etc. And my MD doctor sent me every pathology report. I have a thick notebook with every test result.
I read your other posts. Welcome to the board and keep in touch!
Mark
Allan1970
12-01-2008, 06:47 PM
Does anyone know of anyone on the trial, has it started? would be great to know something..
casinogal
12-01-2008, 08:47 PM
Allan, the last I read, they were still recruiting and were expecting to complete phase I in April. That's not very far off; guess it will depend how soon they get started. They were looking for healthy individuals and listed what recruits should not have to participate. Seemed to me it would take awhile to find subjects that healthy.
Jodie, that was interesting. I had blood tests, etc. but am scheduled to go for a muscle biopsy on Dec. 11. Apparently, all my tests were in the normal range, so they want to do further testing, including some tests I already had. Doesn't leave me with much choice if I want to get a handle on this. Sorry you had a bad experience. They should be obligated to share results.
Jodie, that was interesting. I had blood tests, etc. but am scheduled to go for a muscle biopsy on Dec. 11. Apparently, all my tests were in the normal range, so they want to do further testing, including some tests I already had. Doesn't leave me with much choice if I want to get a handle on this. Sorry you had a bad experience. They should be obligated to share results.
nodakr144
12-01-2008, 09:40 PM
More information on the trial can be found at www.clinicaltrials.gov. As Casino Gal mentioned, there are quite a few restrictions on the volunteers they are accepting for the trial. In addition to a whole host of things you cannot have, you must be a female between the ages of 45-75 to participate.
Allan1970
09-04-2009, 05:10 PM
Hi everyone, just to let you all know the first phase is complete, and the results look OK! second phase trial to be done check out the acceleron web site. keep the hope!
cheers
Al
cheers
Al