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There are no responsibilities associated with membership. The purpose of the Registry is to maintain an established group of Alphas and Alpha-1 carriers willing to participate in research. The Alpha-1 Research Registry was formed to facilitate research on Alpha-1 and ultimately find a cure.
Participation in a study is never required. It is important to realize every research effort is not appropriate for all participants. Some are excluded by distance, medical condition, or economics. However, everyone can make a contribution by filling out the enrollment application, which provides us with valuable demographic and medical information. Some studies are as easy as filling out a questionnaire in the comfort of your own home. Those members able to travel to a study site will have opportunities to participate in clinical trials for new medicines and treatments. Members should note that research studies promoted through the Registry will come in many forms with different levels of commitment.