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Wednesday, March 7, 2012
Family members of persons with Celiac wanted for research study
The National Foundation for Celiac Awareness (NFCA), in collaboration with Beth Israel Deaconess Medical Center in Boston, is conducting research on the perceptions of celiac disease among families where a member has been medically diagnosed. This research seeks to uncover the attitudes and beliefs of at-risk family members who have not been tested for the disease.

The study will have two phases: telephone focus groups and personal interviews, and an on-line survey. The telephone focus groups and personal interviews at phase one will impact and define the content of the on-line survey. This notice is for participation in phase 1, the telephone focus groups and personal interviews, which is now open.

All telephone focus group participants will receive a gift pack of coupons and/or healthy mainstream nutritional products with a gluten-free label valued at $15.

Results from the focus groups and personal interviews will guide the development of an online survey. The online survey will not open up until early March 2012, after the first phase of this study is completed.

If you wish to participate only in phase two, the online survey, please see instructions below entitled “Taking Part in Stage Two: the Survey.”

To be eligible, participants must:

  • Be 21 years or older
  • Speak fluent English
  • Have a biological relative (parent, sibling, child, aunt, uncle, niece, nephew, grandparent, grandchild or half-sibling) who has been diagnosed with celiac disease.
  • NOT have been tested for celiac disease.

Are you eligible for the telephone focus groups or personal interviews?
If not, do you know of someone who is?

To express interest in participation or to refer someone potentially eligible, please email the researcher at Make sure to include an email address where you or your referral can be reached. Indicate your preference for either a focus group or personal interview (which can be done over the phone). You or your referral may be sent a short 6-item questionnaire to confirm eligibility. If you do not hear from us, you can assume that phase one has been closed.

Taking Part in Stage Two: The Survey
If you are only interested in completing the survey, or know someone who might be interested in taking the survey, please email the researcher Make sure to include an email address where you or your referral can be reached. Also, include “Survey” in the subject line. Study investigators estimate that the survey will be available in early March 2012. The survey will be available for 2 weeks.

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