Tuesday, April 29, 2008

Clinical Trial Looks at Emotional Side of ALS

Clinical Trial Looks at Emotional Side of ALS

A research study is being conducted by Avanir Pharmaceuticals at 30 national study sites, including some of The ALS Association’s Certified Centers of Excellence to test drugs on people with ALS who frequently become overly emotional. People with pseudobulbar affect (unfortunately I have this, evidenced by my speech and I'm in this trial at Columbia-starts on may 9th) are being sought for approximately 30 U.S. study sites testing the efficacy and safety of a targeted investigational treatment known as Zenvia™ or AVP-923. The enrollment has started and is expected to end by the end of this year. In medical terms, the condition is referred to as pseudobulbar affect (PBA), which is characterized by uncontrollable laughing and/or crying. According to the Avanir Pharmaceuticals Web site, PBA affects more than one million people in the United States, including those who have been diagnosed with other neurological diseases such as multiple sclerosis, Parkinson’s disease, and dementias ranging from Alzheimer’s disease to stroke as well as traumatic brain injury. “People who suffer from PBA in many cases will curtail their social activities because they are embarrassed when they have these uncontrollable outbursts. By taking themselves out of social situations it could result in a change in their quality of life,” said Miriam Brodkin, program manager of patient services for The Association. Avanir Pharmaceuticals also states on its Web site that from 10% to 50% of people with neurological disorders suffer from PBA. The Web site states that PSA may occur when disease or injury damages the area of the brain that controls normal expression of emotion and that this damage can disrupt brain signaling causing a “short circuit,” triggering episodes of involuntary emotional expression. “This information may be extremely helpful to ALS patients suffering from the uncontrollable emotional outbursts associated with PBA,” said Ryan Arnold, associate director, clinical research, Avanir Pharmaceuticals.

1 comment:

Anonymous said...

Hello Drew,
I often frequent your blog because I find your strength uplifting. My husband Andrew 41 also has bulbar ALS. I was wondering if you have participated in any other clinical trials. We are trying to decide which trials to participate. We have had skin biopsies taken for a local study (saratoga springs, NY) and were looking into the rocefin study. My husband has been taking rocefin IM for approx a year. Prior to that he received IV rocefin. Do I know if it has helped....not sure. Anyways, just want you to know that I read..and appreciate all your work on your blog. Hope today was a good day..or at least some good moments. Also, you seem at the same point as my husband, saw the picture of you with the walker. We just bought a recumbent trike...it has been a godsend. He needs total assist getting on and off..but is able to pedal independently...it is amazing. Able to pedal in the hood with our kiddos 4 and 6. Anyways..thinking of you. Fondly, KR