Jennifer Harris

Family Members of Persons with Celiac Disease Wanted for Research Study (STUDY IS CLOSED)

by Jennifer Harris on March 9th, 2012


Gluten Free Works Jennifer Harris

(Editor’s Note: This study is closed.)

I just learned of a new study being conducted by The National Foundation for Celiac Awareness (NFCA) and Beth Israel Deaconess Medical Center (BIDMC) in Boston, Massachusetts to better understand the attitudes and beliefs of family members of persons with celiac disease.

More information on the study and how you can get involved follows: 

Celiac disease occurs in 10% of first-degree family members, such as a parent or sibling, and up to 20% of second-degree family members, such as an aunt, uncle or

grandparent. It is clear that an opportunity to increase diagnosis lies within screening this critical population.

Despite this increased prevalence, I’m sure we all know one father, daughter or grandchild who remains reluctant to be tested. The reasons for this reluctance are poorly understood, though experts speculate that the burden of the gluten-free diet and an “I’d rather not know” attitude are often the reasoning.  Together, NFCA and BIDMC aim to learn why this remarkable imbalance exists by uncovering 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 group and personal interviews at phase one will impact and define the content of the on-line survey. This notice is for participation in phase one, telephone focus
groups and personal interviews, which is now open.

By spreading the word, you will help to facilitate the work of an important study that seeks to learn ways to increase diagnosis of celiac disease among an at-risk population.

Questions? Please contact: claudia_dolphin@emerson.edu.

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Author Information: Jennifer D. Harris, Atlanta, GA
Jennifer D. Harris, http://www.jenniferglutenfreeingeorgia.blogspot.com
Atlanta Gluten-Free Examiner
Gluten-Free Product Specialist, Return to Eden
Program Chair, Atlanta Metro CeliacsTwitter@jenniferGFinGA


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