Tuesday, October 09, 2007

Research into the Impact of Testing Children for Alpha-1

I think I may investigate this opportunity to contribute to the Alpha-1 community.

Hey all you Alpha parents out there, please consider participating in this
important study within our community. To be clear, this is for the parents not
the kids. Or, if you were diagnosed as a child, this study is for you, too.

Alpha-1 Genetic Testing of at Risk Children

The objective of this study is to investigate the ethical, legal, and social
impact of testing at risk children for Alpha-1. The results will inform the
development of recommendations for health care professionals on what
constitutes disclosure of risks and benefits in informed consent or assent by
children who are considering testing for Alpha-1.

As a pre-study, we will conduct 2 focus groups: one in Denver, Colorado on
November 10, 2007 and one in Orlando, Florida on December 1, 2007. To
participate in a focus group, you must be a parent who has made a decision
to test or not to test your at risk child for Alpha-1 or an adult who was tested
for Alpha-1 as a child. To enroll in the focus group or for more information
please email marilyn.coors@uchsc.edu or call 1-303-315-0203. To participate
in the study survey, please enroll in the Alpha-1 Research Registry. The study
is funded by the Alpha-1 Foundation.

To enroll in the Alpha-1 Research Registry at the Medical University of South
Carolina, read the following information:

The Alpha-1 Research Registry is a confidential database of individuals
diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1) and persons identified
as Alpha-1 carriers. It serves as a resource for investigators seeking
individuals with Alpha-1 to participate in clinical trials, surveys, and other
scientific and medical data collection activities. The Registry’s Family Linkage
Program facilitates genetic research and other studies requiring family member
participation while protecting the privacy and autonomy of each family
member. The Registry is also a vital component to other Alpha-1 research
endeavors such as the Alpha-1 Coded Testing (ACT) Study and Genetic
Modifiers Study. The Registry is conducted under the direction of Charlie
Strange, M.D. at the Medical University of South Carolina. For more
information about the Registry Program, you may visit the website at
www.alphaoneregistry.org, email at alphaone@musc.edu or call toll free at 1-

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