Talk to your doctor before enrolling a clinical trial. He or she knows your condition best.
If you find a trial that interests you, learn more.
Check out the official trial protocol for full details on the trial.
Contact a trial coordinator to find out more about the trial.
Create a list of questions that you can bring in to your visit that covers everything from basics like What do they know about this treatment already? and What tests will I have to undergo? to How will the study results be used and will insurance cover medical costs if any arise?
Knowledge Is Power
Find Out What's Going On in Lupus Research
Lupus research is on the cusp of explosive growth. As with any disorder—especially a complex one like lupus that tends to show up in different parts of the body—it’s smart to stay up-to-date on the findings of clinical trials and other research in lupus.
Researchers around the world are studying lupus. To explore their findings, search PubMED.org a National Institutes of Health (NIH) site that compiles biomedical literature citations and abstracts.
On the PubMED.org site, try searching such general terms as lupus, systemic lupus erythematosus, and discoid lupus, as well as more specific ones for a lupus complication (lupus nephritis, lupus central nervous system, lupus anemia, lupus ophthalmology, lupus pregnancy).
What Does That Mean?
Even advanced immunologists need to pause and ponder when it comes to understanding a complex autoimmune disorder. For a better handle on the terms commonly used in lupus research, see Science Made Simple.
You can also add the phrase clinical trial to the search terms. Doing this tends to generate more accessible, easy-to-read abstracts. For example, a PubMED.org search for lupus nephritis clinical trial resulted in more than 230 citations. This was one of them:
Houssiau FA, Vasconcelos C, D'Cruz D, et al. Early response to immunosuppressive therapy predicts good renal outcome in lupus nephritis: lessons from long-term follow-up of patients in the Euro-Lupus Nephritis Trial.Arthritis Rheum. 2004;50(12):3934-40.
Typically, PubMED provides abstracts but not full text stories. While this is hardly ideal, the abstract does usually capture the essence of the study’s finding. If you want to see the whole article, try getting a copy at a university medical library or ordering the relevant journal issue online (there’s usually a link from the abstract).
Tips from Trial Veterans
Bring a tape recorder when you go to talk to the trial coordinator.
Have someone come with you on your visits.
Make sure you can still see your regular doctor.
Ask if you will get follow-up care and for how long.
If you need flexibility in your visit schedule, ask what can be worked out.