<<Disclaimer: Verify this information before applying it to your situation.>>

PHYLLIS & MANNY STRUMPF <[log in to unmask]>  wrote:

>The March issue of the Denver Metro mentioned the CEDAR study for
>family incidence of CS. I am interested in learning more about this
>study and whether it is feasible for any of my family members to
>participate on the east coast. Thank you.   Phyllis (Connecticut)

The following was written by one of the CEDAR staff,  Stephanie Tudor
<[log in to unmask]> .  She is NOT a subscriber to the CELIAC list, so
anyone with further questions should contact her directly. If you live in
Denver and are biopsy-confirmed, they would love to hear from you.

-----forwarded email begins -----

   The Celiac Disease Autoimmunity Research (CEDAR) project is
affiliated with the Department of Preventive Medicine and Biometrics
in the School of Medicine of the University of Colorado, Health
Sciences Center.  It is a project supported by a grant from the
National Institutes of Health (NIH), and will collect data for a
total of five years.   The principal investigator is Marian J.
Rewers, MD, MPH, PhD.  Other coinvestigators include:  Jill Norris,
PhD; George Eisenbarth, MD, PhD; Ronald J. Sokol, MD; and Edward
Hoffenberg, MD.

   The goals of this study are primarily to investigate the genetic
and environmental causes of celiac disease, through the determination
of the prevalence of anti-endomysial antibodies (EMA) in children
considered to be at risk based on their family history (first degree
relative) of either  diabetes mellitus (Type I) or celiac disease or based
on their HLA genotype (DR3) that is suspected to put them at an
increased risk. The study is anticipating an enrollment of approximately
3,000 eligible children under the age of ten years.  Most of the children
reside in the Denver metro area, and a large proportion
(approximately 40%) of the children involved with this research are
concurrently enrolled in the Diabetes Autoimmunity Study in the Young
(DAISY), which is run by the same principal investigator.  The DAISY
project is evaluating the presence of autoimmunity in relation to a
prediabetic (insulin dependent diabetes mellitus) condition.

   The enrolled subjects are screened initially between the ages of
two and five years of age with a serum sample tested using an
IgA-based anti-endomysial antibody assay.  The serum samples are also
screened for IgA levels in order to rule out the potential for false
negative results in IgA deficient children.  For the subjects who are
tested at a positive titration, follow-up includes a clinic
evaluation and small bowel biopsy at the Pediatric Gastroenterology
Department at the Children's Hospital of Denver, Colorado.  If a
diagnosis of celiac is made, the subject is referred for nutritional
counseling and follow-up serum testing is done six months after the
diagnosis to confirm effective treatment.   Dietary factors are
also collected upon enrollment  of the subjects, reflecting dietary
changes that are made between the ages of one and two years of age,
as the introduction of gluten into the diet usually occurs in this
time frame. Information on family history of other autoimmune
conditions is also collected.   Subjects who test negative for the
presence of anti-endomysial antibodies will be rescreened two years
after their initial testing, to verify their immune status with respect
to the anti-endomysial antibodies.

    By the end of the study period, we hope to have data that more
accurately defines the prevalence of celiac disease in a United
States population.  The children recruited based on their HLA type
are from a general population screening, and their data  should be able to
provide more accurate statistics on prevalence, and perhaps
incidence, as some of these children have been followed since birth.
We also hope to have identify associations with potential
environmental exposures which may increase susceptibility to celiac
disease.

-----end of forwarded email ----

Bill Elkus
Los Angeles