Alpha-1-antitrypsin deficiency

As of 2019, there are ongoing research studies to learn more about alpha-1 antitrypsin deficiency (AATD) and develop better treatments. People with genetically confirmed AATD are invited to join the Alpha-1 Research Registry at www.alphaoneregistry.org. The Research Registry is a contact registry for people affected by AATD, and invites members to participate in trials as they come up. You can also view ongoing studies on that site, or at the ClinicalTrials.gov website at www.clinicaltrials.gov.

If you have not had genetic testing, as of 2017 the Alpha-1 Foundation and Medical University of South Carolina also make free and confidential testing available for alpha-1 antitrypsin deficiency. This free testing is part of a research study called the Alpha-1 Coded Testing (ACT) Study. Participants receive a free, at-home test kit after completing an informed consent form and research questionnaire. Results are returned directly to the participant several weeks later. For more information, or to join the ACT Study for a free test kit, visit www.alphaoneregistry.org.