[BobbyB]

MS Patients Still Positive For Tysabri Following July Announcement Of PML Cases - PatientsLikeMe Report Indicates
Main Category: Multiple Sclerosis
Also Included In: Regulatory Affairs / Drug Approvals
Article Date: 04 Nov 2008 - 6:00 PST


PatientsLikeMe, the leading online community for patients with life-changing conditions, announces the release of its newest PatientsLikeMeListen(TM) report: "Did the July 2008 PML announcement affect the Tysabri brand?" Among its findings, the report reveals that patients retained an overall positive perception of the Tysabri brand despite the July 2008 announcement of two additional PML cases.

"In light of last week's announcement of an additional case of PML in a Tysabri patient, we felt it appropriate to release this report to give patients a voice in this discussion," states David S. Williams III, one of the founding executives at PatientsLikeMe and co-author of the report. "With patients becoming more influential in their treatment decisions, this report gives insight into how patients may interpret this newest PML announcement."

PatientsLikeMe performed a sentiment analysis on its community of more than 8,500 MS patients. The analysis compares the three weeks following the July PML announcement (August 1 through August 21, 2008) with the 33 weeks prior to the announcement (ending July 31, 2008). As part of the analysis, discussion posts on PatientsLikeMe's forum were designated positive, negative, both positive and negative, or neutral based on the subject of the post, efficacy, safety, or tolerability.

Some key findings of the report:

1. Patients retained an overall positive view of Tysabri in the three weeks following the announcement of PML cases
2. Open and honest communication of the PML cases by Biogen did not adversely affect patient perceptions of the Tysabri brand
3. Safety concerns dominated conversation following the announcement but didn't lead to a negative perception
4. The benefit/risk ratio of Tysabri continues to be a main part of patient discussions about the medication

The report includes full demographics on patients who discussed Tysabri including age, gender, length of time taking Tysabri, number of individuals currently taking Tysabri or discontinued, and other measures.

About PatientsLikeMe

PatientsLikeMe is the leading online health community for patients with life-changing conditions. PatientsLikeMe creates new knowledge by charting the real-world course of disease through the shared experiences of patients with ALS, Multiple Sclerosis, Parkinson's, HIV, and Mood conditions (including depression, bipolar, anxiety, OCD and PTSD). While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world. PatientsLikeMe endeavors to create the largest repository of real-world disease information to help accelerate the discovery of new, more effective treatments.

PatientsLikeMe


View drug information on Tysabri.

http://www.medicalnewstoday.com/articles/128087.php

[lady_express_44]

"MS Patients Still Positive For Tysabri Following July Announcement Of PML"

Interesting title for the article . . . it should probably be "MS Patients Still Positive ABOUT Tysabri ...."

It seems to be working for a lot of patients, and the risk is still below the 1:1000 which most people signed up for, so this probably isn't too surprising.

Thanks.

Cherie