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The National Foundation for Celiac Awareness (NFCA) and Beth Israel
Deaconess Medical Center (BIDMC) in Boston, Massachusetts are conducting
research to better understand the attitudes and beliefs of family members
of persons with celiac disease, a population that is at an increased risk
for developing the autoimmune condition.


Celiac disease occurs in 11% of first-degree family members, such as a
parent or sibling. In fact, siblings are truly at an increased risk, with
their chances being double that estimate. The autoimmune condition also
occurs in 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. But first, we must reach them.


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.


NFCA encourages you to learn more by visiting:

www.celiaccentral.org/researchstudy/


Not interested but know someone who might be? 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: [log in to unmask]


Thanks in advance for your support!

NFCA & BIDMC Team


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whitney ehret
*communications director
national foundation for celiac awareness (nfca)
p.o. box 544
ambler, pa 19002
215-325-1306 ext. 103
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www.CeliacCentral.org <http://www.celiaccentral.org/>**
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*The information above is not intended nor suited to be a replacement or
substitute for professional medical treatment or for professional medical
advice relative to a specific medical question or condition. The above
information is not intended to establish a doctor/patient relationship with
any physician. There is no replacement for personal medical treatment and
advice from your personal physician.*

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