Study: how family members perceive celiac disease

The issue of getting tested for celiac disease can be tricky for a family. Once someone has been medically diagnosed, doctors recommend that close relatives also be tested even if they don’t have any symptoms.Close is defined as first-degree relatives — sibling, parent or offspring  and second-degree — grandparent, aunt, uncle or grandchild.

But many family members are reluctant. Now researchers want to look into the attitudes and perceptions these un-tested, at-risk family members have about celiac disease.

The National Foundation for Celiac Awareness, in collaboration with Beth Israel Deaconess Medical Center in Boston, is conducting the research.

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  after the first phase of this study is completed.

Taking Part in Stage One: Focus Group or Interview
To be eligible, participants must:

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

To express interest in participation or to refer someone potentially eligible, please email the researcher at [email protected].  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 [email protected]. 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 for two weeks sometime this month.

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