More than 12 million people have been diagnosed with COPD, and Alpha-1 antitrypsin deficiency (Alpha-1) is the most common known genetic risk factor. Many COPD patients do not realize they have this genetic disorder, in fact, according to Robert A. Sandhaus, MD, PhD, division of pulmonary medicine, National Jewish Medical and Research Center, Denver, and the principal investigator of the study, there could be as many as 400,000 people in the United states who have lung disease due to Alpha-1 and do not know it.
The study is a major cooperative effort between the Alpha-1 Foundation and the American Association for Respiratory Care (AARC), which will test 5,000 COPD patients to determine the prevalence of Alpha-1. The study will also give RTs an opportunity to demonstrate their effectiveness in performing significant pulmonary clinical research.
"Respiratory therapists will have a critical role as more genetic factors are identified … ," says John W. Walsh, Alpha-1 Foundation president and CEO. "The expanding role of the RT in supporting the physician will accelerate early detection and access to appropriate care."
Thomas Kallstrom, AARC chief operating officer and study coordinator for AARC concurs: "The involvement of respiratory therapists in this process is a natural relationship. We’re proud to be part ot this monumental study."
The study will enroll 5,000 people at 15 academic sites around the United States. To meet eligibility requirements, patients must have been referred for pulmonary funciton testing at the site. Any patient meeting COPD criteria as defined by GOLD will be offered enrollment.
The study takes approximately 30 minutes, and participants will receive the results. If they are positive, they will receive educational information and encouraged to call a toll-free number to speak to an Alpha-1 genetic counselor.
For more information about Alpha-1 click here