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Survey: Your chance to shape the treatment.

 
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peanutsk
New nutter


Joined: 02 Mar 2010
Posts: 2
Location: manchester

PostPosted: Fri Mar 05, 2010 12:04 am    Post subject: Survey: Your chance to shape the treatment. Reply with quote

Dear Parents,

We are a European pharmaceutical firm, developing a new preventative treatment for peanut allergy.

At present we are in the development phase and would greatly appriciate your opinion on what form you would like the product to be.

We invite you to fill out the survey "Peanut Allergy Survey.. your chance to shape the treatment.. "It is really short, so it will not take long at all. To fill it out, visit:

https://spreadsheets.google.com/viewform?formkey=dENLSlpkZGpWa3d6Q2p3MTBzeHc4bnc6MA

Thank you so much for your time.
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AlexG
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Joined: 12 Apr 2007
Posts: 121
Location: London

PostPosted: Fri Mar 05, 2010 11:23 am    Post subject: Reply with quote

Hi - please drop me a line and tell me a little bit more as I may be able to cover it in some form, but am certainly interested in the subject anyhow. You can get me through my website. Many thanks.
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Alex Gazzola

www.twitter.com/HealthJourno
http://foodallergyandintolerance.blogspot.com
www.alexgazzola.co.uk
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admin
Site Admin


Joined: 23 Mar 2007
Posts: 137

PostPosted: Fri Mar 05, 2010 6:55 pm    Post subject: Reply with quote

I have deleted the same post in other sub-forums and left this one.

Which company do you represent? This feels much more like a pure marketing study exercise than something I would expect from a pharmaceutical company. Why are you using Google as opposed to your own company's website, for example?
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peanutsk
New nutter


Joined: 02 Mar 2010
Posts: 2
Location: manchester

PostPosted: Sat Mar 06, 2010 9:50 pm    Post subject: Reply with quote

Dear All & Admin,

I am conducting this survey as part of a European(Spanish) pharmaceutical firm. The reason I have not disclosed the name of the company is that I am under confidentiality agreement with the company.I am also a student at The University of Manchester (ID 7317386).

As mentioned before our product is in the testing phase and we have filed for a Patent. The purpose of this study is to the better understand the requirements of our UK customers so that they can be accommodated into the product (as is evident from the survey).

As we all understand that it is difficult to conduct a survey of peanut allergy patients in the conventional manner, I am using this platform to conduct the survey and really appreciate your efforts.

If there is any further information you require please let me know. And if there is any way you can help we would really appreciate it.
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admin
Site Admin


Joined: 23 Mar 2007
Posts: 137

PostPosted: Sat Mar 06, 2010 10:27 pm    Post subject: Reply with quote

After I deleted the multiple postings, you have now started spamming every single user on the forum with the same thing as a private message. This is really unacceptable, and again not what I would expect from any professional company.

If you would like to contact me to discuss your bona fides I can be reached at admin@peanutallergyuk.co.uk.
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Storm
Stormzilla


Joined: 16 Apr 2007
Posts: 492
Location: South Cambridgeshire, UK / Canada

PostPosted: Sat Mar 06, 2010 11:19 pm    Post subject: Reply with quote

Sorry, but I won't be answering your survey. The pharmaceutical company you are representing is over-simplifying the entire issue of allergies. I don't trust that a pharmaceutical company will be able to develop a "product" to cure or prevent peanut allergies. Not after all the research that is going into the Addenbrooke's study and trials, for example. And what about other food allergies? Tree nuts, etc??? No mention of that! And it is inaccurate to state that periodic injections, tablets or liquids are preventative treatments for peanut allergy. This is not hay fever. As it stands, avoidance is the ONLY preventative treatment for the general public (i.e. those not taking part in the Addenbrooke's study). The Epipen is not a preventative treatment for peanut allergies. It is used to treat anaphylaxis.

This pharmaceutical company either has a shocking ignorance of allergies, or you are merely a marketing student trying to put together a project to be graded. If you are going to approach a medical subject for your marketing research project, please do some research on the subject first.
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emmaj24
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Joined: 12 Sep 2008
Posts: 744

PostPosted: Sun Mar 07, 2010 7:11 am    Post subject: Reply with quote

Storm & Admin I totally agree. How dare this person trivialise the allergy. If you are a real student I agree get your facts sorted peanutsk. Without breaching any confidentiality you can read research papers and set up a survey with decent questions that may lead to accurate clinical research. May I suggest that you go and buy the book Bad Science by Dr Ben Goldacre and perhaps visit his website. Then if you are still sure that you are doing some quality research with proper outcomes then and only then come back and take up our time. Useless research which is biased (because its being done by the company with the 'solution') is no better than no research at all.

Stormzilla I'm with you, get zapping! Cool
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alexism
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Joined: 23 Mar 2007
Posts: 630
Location: Cardiff

PostPosted: Sun Mar 07, 2010 8:32 am    Post subject: Reply with quote

I would add that if you *were* just doing this as a marketing course exercise and wanted to canvass the opinions of people with peanut allergy, that would have been fine as long as you were honest about it.

(Yes, I know 'honest' and 'marketing' are a bit odd in the same sentence!)

Also, if anyone were to find a treatment for peanut allergy, then no one with a life-threatening allergy would care what form it was in, or what the cost was as long as it wasn't prohibitive, in much the same way as people with type I diabetes don't love having to self-inject with insulin daily but appreciate the treatment.
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tabbie
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Joined: 20 Feb 2009
Posts: 76

PostPosted: Sun Mar 07, 2010 6:02 pm    Post subject: Reply with quote

This is probably the most ill-informed survey I've ever seen! Smile
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firmpeanut
New nutter


Joined: 06 Mar 2010
Posts: 3

PostPosted: Sun Mar 07, 2010 11:38 pm    Post subject: Our apologies.. Reply with quote

Dear All,
I forwarded your concerns to my company’s technical guys. This survey was designed by me and you are right I don’t have a deep insight of the matter and I sincerely apologize if I hurt any bodies feeling but I meant to do no wrong. Here are some of the answers to your concerns. I will directly paste the reply..

“If you get technical about it, it’s all about the wording of the survey question. The person is technically correct that avoidance of peanuts is the only current recommended "preventative". The key word is preventative.

The auto injectors, antihistamines etc are for "treatment of a reaction”, and one could argue are not really preventatives. But I do know of people who self medicate themselves with antihistamines before eating what they know they have a reaction too, but that is not a recommended preventative.

Currently "allergy shots" using peanut extracts are not recommended. So the question on the survey needs to be changed to "for treatment of reactions" or dropped. The main current recommended reaction self-treatments for peanut are as follows: Liquid or tablet drugs (e.g. anti-histamines), epinephrine auto-injectors and asthma inhalers.

As for the point about trees nuts, tree nuts are not closely related to peanuts, peanuts are legumes, not trees. So an allergen specific therapy for peanuts will likely not work on tree nut allergy, the same as for any current extract based desensitization treatments. Only if cross-reactive allergens were present would there be an effect on sensitization by another species, the more the evolutionary difference the less the chance of cross-reactivity. Also, with purified or synthesized allergens, genomics allows one to predict this much better. If a drug works on an early common pathway for allergy development then one may expect affect on various types of allergies, but that is not the case for the Addenbrooke peanut trial they mention or for our treatment.

The other issue is the word "cure" or "prevent", I don't see where we used the word cure, so it must be the word "preventative", it depends on the definition of the words. One can use "decrease adverse reactions", "desensitization to peanut allergens" and many more. Preventative is a word that most people understand to mean, to prevent reactions, and that is what desensitization does. The Addenbrooke study reports in the press use the word “cure” many times, I don't see the study organizers publishing corrections on the use of it.

I also don't see why we so pessimistic about treatment for peanut allergy. Desensitization therapy is used for insect venom currently and can be very successful in reducing reactions to insect stings. The peanut feeding trial they refer to is peanut specific desensitization using peanut extract taken orally. That is only one potential version of allegen-specifc therapies that could be produced and tested by all the routes we list in the ranking question. The Addenbrooke study does two things, it proves the allergen specific desensitization can prevent reactions to peanut and that better products need to be made. The current Addenbrooke protocol requires expensive measures in case of reactions during the dose increase phase of the treatment and careful maintenance by the patient. It is a peanut flour based therapy and is not molecular based as ours is. All allergists we have talked to have no problem with our form of therapy.”

I hope this reply answers your reservations regarding the survey. I am currently working on making the survey more technically correct and once again my apologies to the admin and the members. If there is any further clarification you require we'll be more than pleased to answer it.

Apologies,
The firm
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admin
Site Admin


Joined: 23 Mar 2007
Posts: 137

PostPosted: Mon Mar 08, 2010 7:38 am    Post subject: Reply with quote

Hmm! If you actually have something that can be used to prevent reactions or reduce the severity of reactions down from anaphylaxis then you will find that people will bite your hands off no matter what form it is in, unless there are any issues that make it unusable such as intolerable side effects.

While minor reactions can be treated with antihistamine (although this is not recommended since reactions can still progress to anaphylaxis), the current sole recommended treatment is adrenaline. Asthma inhalers are NOT a recommended treatment for the same reason; if the reaction has progressed to the point where it affects your breathing, then you need adrenaline and hospital treatment. Everything else is adjunctive - you can use nebulised salbutamol, hydrocortisone IV, etc after initial treatment but adrenaline is first-line for any severe reaction.

I would be happy for you to post an updated version of your survey whenever you're ready. You've got a captive audience here!
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Storm
Stormzilla


Joined: 16 Apr 2007
Posts: 492
Location: South Cambridgeshire, UK / Canada

PostPosted: Mon Mar 08, 2010 10:05 pm    Post subject: Reply with quote

firmpeanut wrote:

The auto injectors, antihistamines etc are for "treatment of a reaction”, and one could argue are not really preventatives. But I do know of people who self medicate themselves with antihistamines before eating what they know they have a reaction too, but that is not a recommended preventative.



Taking antihistamines before willfully eating a food that the person knows will give them a reaction is NOT recommended. This is a dangerous practice and should not be encouraged as the antihistamines will mask symptoms of anaphylaxis and it might be too late to administer the Epipen. It is also not recommended to eat any food that the person knows they are allergic to, as the severity of the allergic reaction can vary... so I don't see how this could be considered a form of preventative treatment. It doesn't belong on the survey.

I appreciate your posting the company's responses but I'm wondering why the company did not verify the accuracy of your survey before you went ahead and posted it all over the 'net. I've seen it in other allergy forums as well. This lack of quality control, as well as ignorance about peanut allergies in the survey, does not inspire confidence. This is the root of my pessimistic reaction to the company's product. I am not "pessimistic about treatment for peanut allergy" and that is an unfair comment to make just because I objected to the quality of your survey.

Granted, I am the one who used the world "cure", but that is because the over-simplified survey makes it sound like people can just pop a pill or get an injection... or even buy treatment over the counter. It gives the impression that there is some easy miracle cure. I have been hearing about a peanut vaccine for years... and it still hasn't been approved. Same for Xolair.... the clinical trials were halted in 2006 due to anaphylactic reactions during oral challenges, although some companies are continuing the trials without the challenges. I'm not pessimistic that some sort of solution will be found, but these things take a lot of time, research and effort, as well as going through a lot of bureaucracy. This pharmaceutical company is coming across as saying, "we have found the solution, so what form would you like it in? Pill, injection? Just choose and we'll make it!"

I don't understand the company's comment "if you get technical about it...". I thought that's what research / pharmaceutical companies were supposed to do... be technical! There shouldn't be room for misinterpretation of any kind.

And I wholeheartedly agree with emmaj24's post above. "Useless research which is biased (because its being done by the company with the 'solution') is no better than no research at all. "
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12-year-old son: allergic to peanuts, nuts and raw egg whites
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