What are the circumstances in which you would try a clinical trial? It would be a Phase I.
Well, it would depend on the drug, possible side effects, possible benefits, and impact on existing drugs and treatments. I would be asking my rheumy and neurologist for clearance.
FYI I tried to get into a trial, I didn't qualify.
Phase 1 trials are usually focused on safety rather than efficacy, and often don't even require the participants to have the condition that is being treated. They tend to be shorter than phase 2 or 3 trials. I wrote a blog post (https://goo.gl/GZsCtx) on this topic last year. As a patient, I would prefer to participate in a phase 2 or 3 trial, as some degree of safety has already been proven in previous phase 1 trials.
Such a decision would also depend on the trial itself. Some trials are purely observational, with little risk or reward for a participant (though findings could eventually lead to treatments). For trials that involve treatments, some are of drugs that have already been approved for other conditions, such as Orencia (currently in phase 3 trials). These drugs already have a considerable body of research, which makes it easier to decide whether to participate in a trial. New drugs generally have more unknowns since they are not available to prescribe for any conditions. Regardless, I recommend speaking with your doctor to get their opinion before participating.
At the end of the day, trials carry a risk of side effects, which has to be balanced against the possibility of getting early access to an effective treatment. Of course, someone needs to participate in trials so that treatments can be approved for patients, so participation gives back to other SS patients who could eventually benefit from new treatments. Personally, as I am seronegative, I am generally ineligible to participate in trials.
Because I have MCAS, I'm very sensitive to drugs, so I would pass on trials .. unless I get worse and I am desperate.
Would you let your family members weigh in?
Whether I'd participate in a trial very much a "it depends on the details" decision. Things to consider- how much time involved, how far to go to participate, level of risks described, possibility of receiving something that might help me, how easily one can come off the treatment. The last one is particularly important. Some meds you can just stop if you have a reaction, others are designed so you have to taper, or are a single large dose (like biologics).
As to family member input. Ultimately, you're the boss of your own body. But it may have impact on others - need time to recover from treatments, or bad side effects, or even in theory, your death. So a discussion probably makes sense to outline what you think you are getting into, and how people feel about is probably a sensible thing to do. They may have questions you haven't considered. However, if you have some family members who tend to be alarmists, you may get some pushback.