I haven't participated in any studies. Have wanted to, but impractical due to the long distance to the clinic. All of the ones I would have considered would have had me on a DMD, or, a DMD + another med, or, DMD plus placebo. None would have had me on no DMD at all. I personally would not consider going off a DMD or having only a 50/50 shot (or whatever) of, say, DMD or placebo, just for a study.
Remember in a study, participants shouldn't enter with the expectation of personal benefit. Those who participate are contributing to the wider body of knowledge of MS, for which we all benefit and should be grateful, so while perhaps selfish, I wouldn't want to take the risk associated with no treatment no matter how useful my contribution might be to others in the future.
Certainly there is a benefit in the close monitoring and attention one receives as a study subject, but for me, that benefit doesn't outweigh the benefit of treatment. The clinic you attend runs many studies; perhaps there's another that is of interest to you that would allow you to remain on treatment?
By the way, what does your neuro think? She and your neuro-ophtha may have competing interests in terms of dealing with you as patient vs study subject.
I too agree that studies that put you at risk are not a good idea. Maybe if nothing else is working, you have nothing to lose, and so on, but otherwise, no.
I personally have never been asked to take part in a study, most likely because I'm outside the age parameters they often impose. The closest I ever got was several years ago, when my neuro told me about a new study he was planning to try. This one involved using a small amount of skin from MS patients to grow nerve cells, which presumably could be injected to replace damaged ones. He said he'd be asking me to participate, which I'd have been glad to do, though he was careful to point out that I personally wouldn't benefit.
Unfortunately that one never got off the ground, at least at Hopkins, because my neuro left to take a really big job at NINDS in DC.
Only you can decide if being part of this study makes sense for you. I'd join Sarah though in encouraging you to find out more and look at this with a critical eye.
What kind of result are they looking for? Are they trying to develop a standard for using eye health as an additional tool to diagnosis MS or measure its progression? In that case they are "watching you closely" for disease progression that would match specific measurements of eye health. They get their info when your MS progresses. By then a DMD could be less effective than it would be now. There is no turning back of the clock with MS. Once symptoms appear you may - or may not - return to a previous state of function.
It sounds like your doctor will also be the clinical investigator for this study. That can create a conflict. Your doctor's primary concern is your personal health whereas a clinical investigator's primary concern is the integrity of the study. What if there are two possible paths of action (even if both are probably OK)? Path A would be somewhat better for you. Path B would be better for the research study. If your doctor is also the clinical investigator which path will he recommend? And how will you know which role he is engaging in at a given moment?
I'm not aware that research volunteers are expected to enter studies with no expectations of personal benefit! There is nothing wrong with the desire to gain something that would be otherwise unavailable for years. In fact, desire for personal improvement is a natural and healthy motivation. But it is important to balance appropriate gain against appropriate risk. Medical research shouldn't ask you to place yourself at significantly greater risk by participating than if you chose NOT to participate.
It doesn’t seem to me that a list of general pros and cons is insufficient to test your decision here. You haven't mentioned any treatment alternative to existing DMDs that will be offered during this study. Was it your initial intent to forego disease modifying treatment? If not, it seems you are being asked to risk something greater than you had already decided on - in exchange for an unspecified, and possibly non-existent, gain.
Existing MS treatment is far from perfect. It does, however, offer a measured record of success. I'm not convinced this study is Mummy-worthy. You know Mummy so please consider carefully.
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