Would it be possible to hold a webinar related to nocturnal txs using NxStage? The company is not permitted to respond to questions until they are finished with their nocturnal trial and get FDA approval, but I understand it is permissable to ask those outside the company for their expertise on the subject (i.e. those professionals in the trial, nephrologists who offer their patients nocturnal with NxStage as well as SDD, the home training nurses from these programs etc.).
I would like to have a webinar similar to others we have had where questions are sent in ahead of time, but a webinar specific to NxStage. I know I have at least a half dozen questions re my nocturnal txs with NxStage that no one has been able to give me an accurate, complete answer to yet. The technology is new to nephs who are just now branching out to offer their patients nocturnal. So, a neph, nurse or someone who has had more experience working with home patients using NxStage nocturnally is who is needed for a webinar of this type. I know patients who have used NxStage nocturnally for at least 4 yrs. so there has to be some professionals out there who can educate on this modality. Having general webinars on nocturnal has been great, but I think most of us U.S. patients use NxStage, thus need NxStage specific education.
I would suggest posting your questions here and then if someone knows a definite answer, they would be able to post it for you.
Remember, differetn clinics, people do things differently so the anwer to one questions may be different for different people. It is all individualized in many cases…
I have posted my NxStage nocturnal questions on this board and others, but get few or incomplete answers, because it really takes a professional experienced in NxStage technology, nocturnally, to educate on this subject. I am going to try making the same suggestion to other sites as well so hopefully a professional somewhere will surface to educate. The AAKP is now doing teleconference education with professionals and the Renal Support Network does Kidney Talk audio education programs, so hopefully someone will take a stab at it. I know NxStage has not completed the trial and is not able to address nocturnal issues with their machine, but surely there is a way that someone outside the co. can educate patients as I believe there are around 100 patients using Nxstage nocturnally and there has to be someone who can address nocturnal tx issues specific to NxStage.
I doubt if you’d find a person to talk about nocturnal on a specific machine today, but I can envision a time in the future after FDA approves nocturnal for NxStage that a person might become available. As a note, NxStageUsers is considering starting its own webinars that could be more specific to the system. We’re in the process of testing out different platforms, which are either free or very low cost. Since NxStageUsers doesn’t have or accept corporate sponsorship, money is an issue. Individuals can make a donation at www.nxstageusers.com.