Message from the Editor
Choosing to participate in a treatment study is a personal decision that will require lots of information and time to determine if this is something you want to do. The purpose of the Treatment Studies section is to inform you about the process of research studies, while at the same time to protect your rights and respect your need for privacy.
Why is it essential that your privacy be protected? Once you give out your personal information by filling in a form on a website or leaving it on a voice mail answering machine, you have absolutely no control over how it will be used. Do you really need the hassle of being called or e-mailed by marketing or local sales representatives? Yet, while inquiring you still would not have a clue as to whether the research company will be recruiting study participants in your area or if you even meet the study qualifications. Some, but certainly not all drug companies, operate in such a manner that they collect everything about you before you can find out more information about their study.
One credible site for patient registry is researchmatch.org. It’s run by the National Institutes of Health.
As a patient, I want you to have the ability to check out the treatment studies without any obligations or invasion of your privacy. Even if you do not want to participate in a trial at this point, please review the study summaries so that you can remain current and optimistic about the exciting progress that is being made in the field of fibromyalgia.
Fibromyalgia Network is providing a link to Research Match to bring to your attention trials in your area. Hopefully many of you will be able to meet the strict study entrance criteria for some of these trials so that new and better therapies will be available for all of us in the near future.
If you are enrolled in a study and wish to provide feedback (good or bad), please send an e-mail to firstname.lastname@example.org with “Treatment Study” in the subject line.
I want to thank all of you who expressed an interest or who have participated in treatment studies. Even if you cannot participate, your support of this effort is very much appreciated.
Kristin Thorson, Editor