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Kathleen Smith

Fda Survey For Celiacs Regarding Labeling

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Hi Everyone,

I got this thru The National Foundation for Celiac Awareness.

The U.S. Food and Drug

Administration (FDA) is seeking adults diagnosed withceliac

disease or gluten-intolerance or caregivers to such individuals

toparticipate in a research study on their grocery shopping

habits.Participants will be asked to take an Internet survey, which will

take appr...oximately 10 minutes to complete.

Here's the link:

www.synovate.net

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I just took this and was going to post. It's not too long, and there is an opportunity to comment at the end.

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(EDIT: THE SURVEY HAS BEEN CLOSED FOR NOW, NEITHER OF THE LINKS IN THIS THREAD WORK, YOU DON'T NEED TO SIGN UP FOR ANYTHING)

Being a natural sceptic on the net, I have to ask. Wasn't the FDA planning on using a different format for collecting the data? I had read all their planning a while ago and they stated they were only going to be collecting data from people who specifically had a formal diagnosis and were registered through official Celiac foundations. Additionally this Synovate company requires you to consent to unlimited future communications of "offers" from them to sign up. I've set up official survey forms for programs run through state governments before and we used companies that were A LOT more professional than this site seems to be.

Edit: Guess it might be valid, but you have to use the correct link for it:

www.synovate.net/forgluten

The correct link doesn't require you to sign up to synovate's marketing system.

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Thank you for alerting us to that, it was quite cathartic.

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Being a natural sceptic on the net, I have to ask. Wasn't the FDA planning on using a different format for collecting the data? I had read all their planning a while ago and they stated they were only going to be collecting data from people who specifically had a formal diagnosis and were registered through official Celiac foundations. Additionally this Synovate company requires you to consent to unlimited future communications of "offers" from them to sign up. I've set up official survey forms for programs run through state governments before and we used companies that were A LOT more professional than this site seems to be.

Edit: Guess it might be valid, but you have to use the correct link for it:

www.synovate.net/forgluten

The correct link doesn't require you to sign up to synovate's marketing system.

Thanks so much for providing the correct link. I refuse to sign up with the company and the other link only lead to the sign up page.

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I tried to call the FDA. One section didn't know about this, but transferred me to another area regarding food safety which has such a long wait time I finally gave up. I looked at the FDA site and didn't see it, but I did not do a really extensive search.

This is all over the internet. Since the synovate.net site goes to a globalopinionpanels.com website which is commercial, "World Class Brands Need Your Help" I was suspicious.

FAQ Page https://www.globalopinionpanels.com/web/synovate/faq

What do you do with the personal information I provide?

Personal information provided is used to identify you for appropriate surveys to receive and group your answers with other panelists. All personal information is secured and used for analysis only. Your individual identity is always kept confidential and is never provided to a third party. Additional information regarding your privacy can be found in our Privacy Policy section.

from their privacy policy section, which link does not have its own url, but can be linked to above:

They SAY they protect your privacy, but read the details, because they are a MARKETING Research group:

4. ABOUT THE SECURITY AND ACCURACY OF THE DATA

We maintain the security of the personally identifiable information we hold about you. We store the personal details we hold about you only for as long as needed for the purposes indicated in this policy. Email addresses of persons who opted out or requested to be removed from the Panel will be retained only to ensure we conform to such wish. Where a Panelist has been found to be in breach of the terms and conditions and has been removed, we might retain relevant data to ensure conformity with that decision.

We have in place appropriate security measures, including secure transfer technologies (SSL) as well as encryption methods, to protect the security and confidentiality of personal data whilst controlled by us. We will maintain and improve these measures over time in line with legal and technological developments. However, although we go to lengths to protect your personal data from unauthorized disclosure, you should be aware that electronic communications via the Internet are not always completely secure.

To ensure the accuracy of Synovate

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I just followed the link and it says the survey is closed. Bummer.

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Yeah, it appears the survey was quite popular!

"Thank you for responding to the invitation to participate in the FDA research study on gluten-free statements on the food label. We have had an overwhelming response from the celiac community and have reached our quota much faster than we anticipated. Thanks to consumers like you, we have received over 4,000 completed surveys and, thus, have to close the survey. We apologize for this inconvenience. Thank you again for your interest."

For those wondering what the tone of it was, I must say it actually made me hopeful for once. When I first read the FDA's stance on this issue they were only recognizing biopsy-related celiac disorder as being a problem with no mention of NCGS. Then last year they seemed to open up to the possibility that some people with negative biopsies might also experience some problems. In the survey they treated them like exactly the same thing! To them it didn't matter whether your doctor told you that you actually had villi blunting or systemic gluten problems, which in my mind at least means they potentially aren't just considering it some 1% of the population thing.

The questions asked involved how long since you've been diagnosed, what sort of symptoms you had before diagnosis, if you follow a gluten-free diet, what sort of symptoms you get after either accidental or purposeful ingestion of gluten products, how long it takes for these to set in, how difficult it is for you to follow the gluten-free diet, what are the causes of this difficulty (labeling, amount of choices, expense), how your diet has affected your purchasing habits, what sort of claims you look for on packaging, whether you prefer "gluten-free" or an actual ppm or mg per gram listing, how intense/often you read labels and ingredients lists, what sort of emotions gluten-free shopping can cause, what were the last items that triggered a gluten response, and general demographics.

In addition they provided a number of different visual label claims examples and had you pick which one you would prefer, which one was the most informative and whether you would buy a product that claimed to be both "gluten-free" and "manufactured in a plant that processes wheat products".

So far it seems that both of their survey attempts have filled up within 3 days which is great news because it certainly lets them know what kind of a large need there is for this work!

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