RESPONSIBILITIES

There are no responsibilities associated with membership. The purpose of the Registry is to maintain an established group of Alphas and Alpha-1 Carriers all over the world willing to participate in research.  The Alpha-1 Research Registry was formed to facilitate research aimed to learn more about Alpha-1 and ulitmately find a cure.

Participation in a study is never a requirement. 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 since filling out the enrollment application 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.