Peanut Threshold Study

[twinturbo]

I'm sorta wondering in which journal they're aiming to publish in assuming of course the goal is to publish for peer review. At least it could provide some insight where they're going with it. Unless this is more a private side deal. I'm also worried about it being a one-off in the sense that IRB won't sign off on many threshold investigations for obvious ethical concerns.

In other words highly filtered and controlled sample becomes entire population which becomes "truth" because we have primitive math modeling to prove it. This does have me biting my nails a bit for the future of labeling laws.

[twinturbo]

We all want to read this. All credit to Links being on top of it, very much obliged.

[CMdeux]

The Taylor reference in that link is particularly interesting/telling-- because these values are based upon those patients who are deemed a safe-enough risk to challenge.

What of those whose reaction history is suggestive of not being safe to challenge?  Individual patient risk-benefit plays a role in these studies, and automatically limits who participates if you're doing informed consent.  (Which any reputable study MUST do.)  Catch-22, that.

Literature over the past 20 years seems to strongly suggest that there are some serious structural problems with conclusions in that link; the eliciting doses indicated in the table are really bass-ackwards given what clinicians know/suspect-- and what patients report being the case re: thresholds that are typical. 

XC reactions that are life-threatening seem to be reported most frequently from peanut, cashew, and sesame, for one thing-- and the few studies that have attempted to tease apart a lower eliciting dose can't seem to go low enough with those three.  It makes no sense to me that egg would be an order of magnitude LOWER than peanut there.

So why is it that most people with egg allergy seem to tolerate cleaned lines quite well-- and so many with peanut allergy do not? Is it heat lability of the allergen?  I seriously do not know.  But it DOES seem crazy to me that the thresholds for those three allergens in particular are that low.  So wheat needs a lower threshold than pn?  Really??    I mean-- hey, maybe it does-- but I'd be shocked if that were borne out by a full population analysis of that group.  It suggests that those who react to ultra-trace amounts of WHEAT are more "usual" among those with that allergy than they are among peanut-allergic patients. 



I mean, these aren't necessarily formal criticisms of that data-- but they are disquieting to me personally in that when a data set doesn't seem to match broad anecdote, I have to wonder what the heck is up with that. 

[twinturbo]

I'd be satisfied if there was some platform for a consumer driven counterpoint to include the self-represented voice of those at higher/highest risk threshold throughout study and legislation. It's a little disturbing to have a horrible double-whammy of low transparency and zero representation where these decisions are being made in our stead with increasingly diminishing recourse.

[DrummersMom]

Will have to take time to read through the last few posts.

As part of this study, there is a questionnaire for those who are invited to participate but opt out. I'd imagine there are families who have similar concerns as those addressed in this thread and are not comfortable allowing their child to eat a dose of peanut. Per the abstract, the questionnaire is a "a set of questions intended to permit comparison of basic demographic and clinical allergy data in those choosing not to participate and in study participants."

[twinturbo]

A true opt out is the right to not participate at all meaning no questionnaire, no nothing. How they end up qualifying and quantifying the questionnaire-only and true opt out would be how I would need to come at it. I appreciate as a subject you would like to provide information but two things. 1. For me to try to tinker with someone else's subject is a low blow I'd prefer not to 2. It's how the data and data like this will be presented ultimately, concluded and used that is my concern, in other words during the peer review portion of the process.

If the subjects are controlling the experiment something is extremely borked. The only thing under subject control is participation. Additionally there should be noted the difference between exclusion and opting out. Exclusion one has no control over and it will never be directly included with the data. I should also note that although I realize this is a study it feels a little more on the experimental side to me. In the way that a challenge isn't really a study as gold standard is double-blind. This one is merely open.