The clinic my wife goes to is doing a research program on home dialysis.
She was excepted for HD, however she had some heart problems and had to have a pace maker put in. Due to patients in the research program having to have an MRI once a month she was told she could not be a part of the program. My question is, os it legal for the center to refuse her the right to HD solely because she cannot take the MRI?
[quote=ray clem;11811]The clinic my wife goes to is doing a research program on home dialysis.
She was excepted for HD, however she had some heart problems and had to have a pace maker put in. Due to patients in the research program having to have an MRI once a month she was told she could not be a part of the program. My question is, os it legal for the center to refuse her the right to HD solely because she cannot take the MRI?[/quote]
An MRI is required each month? I don’t quite understand, I am doing home diaysis a little over two years and I don’t do MRIs every month. If that’s exactly what you meant I think there’s something wrong. I don’t think monthly MRIs are required for home dialysis. Am sure others agree.
Perhaps it was suggested that she’s not a good cnadidate for home dialysis?
[QUOTE=ray clem;11811]The clinic my wife goes to is doing a research program on home dialysis.
She was excepted for HD, however she had some heart problems and had to have a pace maker put in. Due to patients in the research program having to have an MRI once a month she was told she could not be a part of the program. My question is, os it legal for the center to refuse her the right to HD solely because she cannot take the MRI?[/QUOTE]
Ray, if I understand correctly, your wife is a candidate for home hemo–but not for the study because she can’t have MRI’s with her pacemaker. I assume you are talking about the NIH more frequent dialysis study, but it could be another one. Have you asked whether that center permit her to do home hemo without being in the study? I suspect that they may not because of the time it takes to train people, and the number of folks they need to recruit for the study. If not, you may want to see if there is another center that could support her in home hemo but is not taking part in the study. We can help you with that–check out the “Find a Center Database” on this site.
[QUOTE=Dori Schatell;11814]Ray, if I understand correctly, your wife is a candidate for home hemo–but not for the study because she can’t have MRI’s with her pacemaker. I assume you are talking about the NIH more frequent dialysis study, but it could be another one. Have you asked whether that center permit her to do home hemo without being in the study? I suspect that they may not because of the time it takes to train people, and the number of folks they need to recruit for the study. If not, you may want to see if there is another center that could support her in home hemo but is not taking part in the study. We can help you with that–check out the “Find a Center Database” on this site.[/QUOTE] Hi Dori , as you may know Jessie and I are in Canada what can you tell me about the NIH study… or could you point me in the right direction… I’m determined to get Jessie in this study… actually I just want him on Nocturnal period… The more info I pick up can only help Richard C/O Jessie
[QUOTE=Jessie St Amour;11821]Hi Dori , as you may know Jessie and I are in Canada what can you tell me about the NIH study… or could you point me in the right direction… I’m determined to get Jessie in this study… actually I just want him on Nocturnal period… The more info I pick up can only help Richard C/O Jessie[/QUOTE] Gee Dori I found them
3 Canadian centers are taking part in the Nocturnal “arm” of this study. We have an article about it that you can read at: http://www.homedialysis.org/v1/rotating/1105topicofthemonth.shtml. The participating centers are listed in the article. We wrote this just over a year ago, and I’ve been meaning to call one of the PI’s and get an update on how recruitment is going…
[QUOTE=Dori Schatell;11824]3 Canadian centers are taking part in the Nocturnal “arm” of this study. We have an article about it that you can read at: http://www.homedialysis.org/v1/rotating/1105topicofthemonth.shtml. The participating centers are listed in the article. We wrote this just over a year ago, and I’ve been meaning to call one of the PI’s and get an update on how recruitment is going…[/QUOTE] Yes we are aware of the study being done in Canada… been in contact with Humber ( Pierratos ) and T.O. General ( Dr Chan ) to my understanding it’s a $3.3 million study, hell of a lot of $ that could have went to purchasing dialysis machines could have went well towards jump starting several clinics.
" Is more dialysis better “is the key question of the study… M. Rocco M.D. the national principal investigator said " the study will help determine if removal of more toxin is beneficial to patients on dialysis” he goes on to add and I quote " This six-times-per-week hemodialysis will remove more toxins than the standard three-times-per-week therapy,but less than the amount of toxins removed by home hemodialysis done six nights per week"
Nothing like answering the question before the study begins… They already know that the removal of toxins is the jest of doing dialysis to begin with !
I feel sorry for Dr’s like Pierratos and Chan who for what 13 plus years now have been saying all along that the frequancy of dialysis is directly responsible for the inprovement of quality of life… the more the better. Look at the Tassin group France and Seattle they have answered the studies question over and over again for what 30 years.
This study is BS period.
To me this study is a repeat of the repeat of the same question only different words that repeated before the intial repeat.
The results for this study that ends in March will not be out until 09 and before that I’d bet their will be a study to review the study itself and by the time that study is reviewed they will implement the results of 09 …but then again I’D not hold my breath unless we have another study on how to do just that. Follow… In the meantime diabetease has been designated epedemic…how many of these people will end up on dialysis oh oh …and I really am sorry to have to say that… but that’s fact. Kidney disease is starting to run away on the system. For one …I do not like what I see… just here in this community of 165,000 the unit just can’t be adding more patient’s and that’s not counting the number of people walking around with some sort of kidney failure and are not aware of it. So much for studies.
Richard C/O Jessie… and yes I am becoming increasingly pro-active
[QUOTE=Jessie St Amour;11918]Nothing like answering the question before the study begins… They already know that the removal of toxins is the jest of doing dialysis to begin with !
I feel sorry for Dr’s like Pierratos and Chan who for what 13 plus years now have been saying all along that the frequancy of dialysis is directly responsible for the inprovement of quality of life… the more the better. Look at the Tassin group France and Seattle they have answered the studies question over and over again for what 30 years.
This study is BS period.
Richard C/O Jessie… and yes I am becoming increasingly pro-active[/QUOTE]
I know that the idea that a randomized, controlled trial of longer and/or more frequent dialysis is frustrating. Nobody did such a study 40 years ago when chronic dialysis first started to be done, and was done 3 times per week because too many people died on once or twice a week, and 3 times allowed machines to be used by two people (trading off days) in a center. Back then, though, treatments tended to be about 8 hours long. When Medicare started paying for dialysis in the US in 1973, they went with the current standard of 3x/week–but never said how long the treatments had to be. Over time, “improvements” in technology led to shorter treatments, but not to longer survival.
At any rate, Dr. Rocco has a set of slides that give the reasons why the National Institutes of Health believed this study was needed. You can see them at: http://www.homedialysis.org/v1/resources/ppt-files/NocturnalHDNKF3a.ppt.htm.
[QUOTE=ray clem;11811]The clinic my wife goes to is doing a research program on home dialysis.
She was excepted for HD, however she had some heart problems and had to have a pace maker put in. Due to patients in the research program having to have an MRI once a month she was told she could not be a part of the program. My question is, os it legal for the center to refuse her the right to HD solely because she cannot take the MRI?[/QUOTE]
I emailed Dr. Rocco to ask about the MRI and how a patient who can’t do an MRI and can’t participate in the study can still do home hemo. He emailed me that the cardiac MRI is one of the two primary outcomes for the study, so if the patient cannot have the cardiac MRI done, then the patient is not eligible to enroll in the nocturnal study. He did say that the MRI is required once at baseline, then again at 12 months (not every month as noted in the thread). If your wife was selected for home HD, then she was enrolled in the nocturnal study, which compares 3 times per week home HD (standard time of 3 - 4 hours) with nocturnal home HD 6 nights per week. Each center has a different policy of how they handle patients not eligible for the study. She should talk with the doctor at her dialysis center who is in charge of the study to see what other options for home HD are available at that center since she now has the pacemaker.
So far as Canadian centers, there now are 4 Canadian centers in the study:
– Western Ontario (Dr. Lindsay)
– Univ of Toronto (Dr. Chan)
– Humber River (Dr. Pierratos)
– Univ of British Columbia at Vancouver (Dr. Copland)