Hi Don, I never turned down any requests for testing or procedures mostly because they were all related to the study and the coordinators kept me in the loop to make sure I understood what was expected or needed for my participation in the studies. They always left the decision up to me and they did a great job to inform me what the purpose of the study was and how my data could be helpful. I'm hoping you get the answers you need when you talk to the study coordinator. Medical research is a hot topic for a lot of us with chronic or rare conditions and we are all wishing there was more being done but the silver lining that makes it work is us as patients with the conditions. As long as it's not painful or costly to me and I can fit it into my life schedule, I'm game to help but I know it's easier to say than do so I'm just hoping it works out for you.