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I thought we'd do a little of administrative stuff which is if you're not on the registry let's make sure you know how to get on and if you are in the registry then what we need to do just as a community in the registry, so Lee gave me this wonderful title of how it works and make it work for you and the way it works for you is your data coming in adding it to other folks, and we learn I always tell everyone I learn from every individual I learn from every group, so you can be part of the registry one of two ways you can have a physician who is interested and has an IRB the internal review board that allows him to send data, or you can do it yourself, so you can call me and get started, and you can have an appointment, and we can talk, and we can get going on a consent your doctor with the IRB will do the same thing, so it's either way you do not have to stay in one place you can go from Doctor to doctor you can do this yourself but if you happen to be at a bigger institution the University of Washington University of Michigan these bigger institutions they will have a way for the physicians to put your data into the registry has paperwork as everybody has there been checklists I will always hear me say send me the data send me the hard copy it's the first thing out of my mouth generally so that paperwork content comes in whether it's from you coming in and sending it directly to me or whether it's your physician either way it's about the information is what helps us to understand what's going on for you as a person most people will be accepted there is some people that will not be very few if it's a physician who has sent the paperwork in we will tell them they will tell you if it's yourself we will tell you directly there are some reasons someone who might have lupus that is a difficult situation and it's confusing and it would not be a reason to be in the neutropenia registry that's one of the main reasons they can also have been neutropenia so it's a disappointment but we want to be sure we understand this group very well and by having people really making sure we know the diagnosis for people in the United States where we can ship medication we will actually send the medication from a pharmacy we will get the prescription from your doctor or the doctor who is registering you will send that it is a shame that we cannot send the medication outside the United States, but it has to do with how fragile the medication is it cannot travel that far it has to maintain cold, and it has to be delivered within a 24-hour time period so for people in the States we're glad we can share and for people not in the States we wish we could so part of what registration is what the type of paperwork that I'm going to want to see so CBC's everybody knows that's everybody's got CBC's done we're going to want people to do bone marrows if a bone density has been done genetic testing is becoming very common now we absolutely want you to share that with us so let us...
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