Wednesday, September 3, 2008

Clinical Trials: A Hot Topic

At my last Lupus Support group meeting, one of the members mentioned that his doctor suggested he participate in a clinical trial. While we all agreed the trials are important, we were each a little reluctant to dive right in and participate. I wish I felt more confident in taking part, because as we all know, that's the only way proven treatments make their way to patients like you and me. I try to remind myself that someone stepped up to the plate before me, paving the way for the drugs that are currently keeping me so well. I guess I'm just a wimp - as the unknown outcome of a trial seems like such a deterrent!

In the summer issue of Lupus Now, there was a great article on the subject, and there was also a mention in the most current newsletter from the Lupus Foundation, Greater Washington area. Here's the gist of the newsletter article - perhaps once Baby Bun arrives and things settle back down, I'll have the guts to look into the subject further.

LFA Launches Center for Clinical Trials Education

The Lupus Foundation of America (LFA) has announced the launch of the Center for Clinical Trials Education (CCTE), a resource for people interested in learning about and joining lupus clinical trials.

The initial programs of the CCTE include a Website (www.lupus.org/clinicaltrials) and a series of grassroots community education programs on clinical research offered through the LFA's network of 38 chapters around the country.

The CCTE Website (www.lupus.org/clinicaltrials ) has extensive information about clinical trials and clinical trial participation. It includes information on the rights and responsibilities of study volunteers and a list of important questions for someone with lupus to consider before joining a study. A trial-locating service on the Website has links to existing lupus clinical trials. Visitors can find details about individual studies, whether they are seeking volunteers, and the medical centers where the trial is being conducted. Future enhancements to the Website include a registry where individuals with lupus can volunteer

Anyone out there have any good experiences to share on the subject of clinical trials? Do tell!

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