[tri-med] FYI - Recruiting participants for a study about registries

A team of researchers at the Johns Hopkins Bloomberg School of Public
Health and the Johns Hopkins School of Medicine is teaming up with the
Genetic Alliance to conduct a study to learn more about the purposes of
genetic disease registries, and people's views of registries.  The
Hopkins researchers will be holding one or two evening focus groups in
the Baltimore-Washington area that will include people who are currently
enrolled in genetic disease registries. The focus groups will last for
two hours and will include discussion of why people join registries, and
their views of the risks and benefits of being included in a registry.

The Hopkins team is also interested in conducting 30-minute telephone
interviews with people who have been eligible to enroll in a genetic
disease registry, but who decided not to enroll.  All people who
participate in a focus group or a telephone interview will be paid for
their time.  If you, or your members, are interested in participating in
this study or if you have questions, please call Gail Geller
(Co-Principal Investigator) or Barbara Bernhardt at Johns Hopkins at
410-955-7894. If you would like information about this study from the
perspective of the Genetic Alliance, you may e-mail Sharon Terry at
sterry@xxxxxxxxxxxxxxxxxxxx

Please pass this on to your members or colleagues.  Understanding
registries will help all of us as we work to understand genetic
conditions.

Best,
Sharon Terry

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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