Alpha-1
Foundation Focus Group and Member Survey
Alpha-1 Antitrypsin Deficiency is a hereditary
condition which affects 100,000 Americans, may result in
serious lung disease in adults and/or liver disease in
infants, children & adults. The Alpha-1 Foundation
(http://www.alphaone.org), based in Miami, is dedicated to
providing the leadership and resources that will result in
increased research, improved health, worldwide detection,
and a cure for Alpha-1 Antitrypsin Deficiency.
Groeneman Research & Consulting lead a focus group
discussion with attendees at the Foundation’s annual
national conference in Alexandria, VA in June to learn (1)
how well the Foundation is serving the national Alpha-1
community’s needs, (2) what improvements and other changes
are desired, and (3) how it might get persons diagnosed
with A1AD and their families and friends more involved in
the organization’s programs and initiatives. A report was
then prepared which summarized the key results of the
discussion.
In the Fall of 2007, GR&C developed and conducted an
online survey of 787 diagnosed Alphas, family, and friends,
using the Foundation’s mailing list as the sampling frame.
The survey covered the current health status and practices
of persons with the deficiency, familiarity with related
health issues, knowledge of the Foundation and usage of
Foundation resources, awareness of and participation in
health testing and research, future priorities and overall
evaluation of the Foundation’s performance. A survey report
was prepared to complete the study.
