Dear Alpha-1 Research Registry Member

Dear Alpha-1 Research Registry Member,

Below is some information about a research study funded by the Alpha-1 Foundation in which you may be eligible to participate.

A research team at National Jewish Health has developed a brief program that you can participate in by phone. The goal of the program is to help Alphas use their oxygen as prescribed. The research team is currently doing a pilot study to learn how they can improve this program before offering it to a larger group of Alphas.

Participants in the study must be prescribed oxygen 24 hours per day, and actually use their oxygen less than 24 hours per day.

Study participation involves:

• Participating in two 45-minute phone calls, approximately one week apart

• Completing questionnaires by mail and phone

• No travel is required—you do not need to come to National Jewish Health to

participate in this study

• Participants will be compensated for their time

If you would like to learn more about this study, please contact Kristen Holm at 303-398-1509. Kristen Holm, PhD, is an Assistant Professor at National Jewish Health in Denver, CO, and is the Principal Investigator of this study. Whether you decide to participate in this study is completely voluntary and your decision will not affect your participation in the Alpha-1 Foundation Research Registry in any way. Thank you for considering participation in this important study. If you have any questions you can call the Registry staff at 877-886-2383 or email them at .

Sincerely,

Charlie Strange, MD

Professor of Medicine, MUSC

Director, Alpha-1 Foundation Research Registry