I’m not sure why it would need names? If it would be used for research, including tracking treatments and outcomes, surely the patient’s name would irrelevant? A unique identification number, similar to those used for exams, should be sufficient. And of course they would need some basic information such as age and gender, as this might be significant in determining what works best for which groups - a 20 year old girl and a 60 year old man might not respond the same way.
I voluntarily joined the MS Society one, but withdrew after a time. Not over confidentiality issues, but because the research seemed to consist of repeatedly trying to gauge whether I’m depressed, and not to be interested in much else. I don’t believe I’m depressed, but it is a tad depressing if someone keeps asking! I am interested in research into the causes of MS, and factors that influence severity and progression - not repeated probing into my psychological state. If I ever thought they were going to do a mass analysis of lifestyle, medical history, and environmental factors in a quest to spot previously unknown patterns in the development of MS, I’d participate gladly, but if all they’re going to come up with is conclusions like: “The prevalence of depression is underestimated in MS” - sorry, I don’t really care! Maybe the not caring is a sign of a depressed person talking, but honestly, I only want to participate in research that strikes at the very core of MS: What causes it? Who is most at risk? Are there early predictors? That sort of thing. I’m really not interested in completing a self-assessment for depression every few months. I’m not saying depression is trivial, BUT I’d be far more willing to participate in research that probes underlying causes of MS, rather than focusing on one specific problem. I’ve already taken part in a genetic study (as have many here, I’m sure), and think that is of much higher scientific value than attempting to measure depression.