Post-procedure inquiry of Dr. Sclafani's patients

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Cece » Tue Jun 08, 2010 10:12 am

thanks bestadmom...so it looks like while some are nonscientists, most are MDs, I was wrong!! I was getting my information from my apparently garbled memory of a discussion here, probably on DrS's thread. So they are mostly MDs of other specialties...and they still don't get paid for being on IRB, other than their salary for being university-hospital-employed in the first place?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby bestadmom » Tue Jun 08, 2010 10:26 am

I don't know the economics of being on an IRB but I do know that Dr. Sclafani is an employee of Downstate and Kings County Hospital so he is salaried and doesn't get paid per procedure.

My gut tells me it is just part of the job. As soon as people are paid extra for doing things, their motivations can become tainted based on where the $$ comes from.

I noticed one community member of each IRB group. I suspect that most of the paticipants in trials are from the community. These are city hospitals where the bulk of patients are local.
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Postby patientx » Tue Jun 08, 2010 10:29 am

Cece wrote:and they still don't get paid for being on IRB, other than their salary for being university-hospital-employed in the first place?


That would probably depend on their salary arrangements with the hospital. But the IRB does charge a fee for its work (how they charge for a study or trial internal to the hospital would depend, I guess, on the hospital and the relationships among departments). In any event, the charter of the IRB is supposedly to look after patient safety, and secondarily the interests of the hospital. The legal protection of the hospital and its reputation would depend on patient safety.

This applies for hospital IRBs. I was told, in the case of an individual doctor's office that wants to participate in a clinical trial, independent IRB services exist that the doctor can hire. The IRB's motivation in this case would seem to be a little murky, but ethics should still apply.

Here is another example of a hospital IRB (which came under some scrutiny a few years ago):

http://irb.jhmi.edu/GeneralInformation/ ... rship.html


EDITED TO ADD:
Cece, it looks like you aren't entirely incorrect. In the case of the Hopkins IRBs, at least, one member is a non-healthcare person from the community (not necessarily working for the hospital). I've asked someone the rationale behind this, and how such a person is selected.
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Independant panel member

Postby silverbirch » Wed Jun 09, 2010 9:46 am

Panel members is a mixture of bodies some are from back rounds that link in with the association that is being assessed , some are independent from the association although they are screened and come from a knowledgeable educated back round e.g business acumen. A good member of the public be able to make informed judgements ....

All follow the same protocols, government guide lines etc that are laid down. I adhere to a section of Code of Practice (Police Reform act 2002) of an Independent Visitor. Criminal Justice Act 1991 there are a number of Acts I need to comply with.

Payment -some are paid but others are not they play an independent role therefore payment can not be made only that of expenses.

I form part of a group and as a panel member (Police) my role is to ensure protocols have been followed and fair play had been adhered to. If I am not happy it would have to be looked into and it would affect the outcome. ONE of the corrective measures can be to change the panel and start over again its dependent on what the disagreement is .

MS Society - I am thinking of looking into how the panel is made up here in the UK and if they have a slot for pro CCSVI on the panel.
I was recently DX MS 2009 I’ve never gone to the MS except for the CCSVI demo…..

Hope this is of help.....
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Postby 1eye » Wed Jun 09, 2010 2:04 pm

IRBs are a red herring. While there could be payoffs happening at that level, it is more likely to be these "unrestricted grants" that support the CMSC and sometimes directly the neurologists. Some of us have seen them passed in unmarked brown envelopes. See facebook for an interesting video on Pharma support for research... I would like to know who is actually starting these shutdowns.

Once somebody turns on the IRB, the damage is done. Physicians are being deliberately hindered and harrassed and prevented from doing what needs to be done. With consequent harm.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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