Alpha-1 Researchers Need Your Help
October 15, 2007
The Alpha-1 Foundation is calling on respiratory therapists to assist with a new research project aimed at assessing the ethical, legal, and social implications of testing children for alpha-1 antitrypsin deficiency (Alpha-1).
The study, which is being funded by the Foundation, will be conducted by investigators from the National Jewish Medical and Research Center in Denver, CO. As part of the pre-study phase, researchers are seeking parents of children who are at risk for Alpha-1, or adults who were tested for alpha-1 as children, to participate in focus groups in Denver and Orlando, FL.
The Alpha-1 Foundation is asking respiratory therapists to help identify parents and/or adults for the focus groups. The Denver group will meet on November 10. The Orlando session is scheduled for December 1.
The results from these focus groups will be used in the development of recommendations on what constitutes disclosure of risks and benefits in informed consent or assent by children being considered for Alpha-1 testing.
If you know of parents with at-risk children, or adults who were tested as children, please inform them of this study and direct them to: Dr. Marilyn E. Coors, 1-303-315-0203, for more information or to enroll.
The Foundation’s request for our assistance is another great example of the strong bonds that have developed between the AARC and the Alpha-1 Foundation over the past few years – bonds which will be tightened further this December at the AARC International Congress when Alpha-1 co-founder and CEO John Walsh delivers the keynote address.