PCD Foundation Announces
Excellent New PCD Review from GeneTests
Phoenix, AZ
Jan 25, 2007 GeneTests, an organization funded by
the National Institutes of Health, is a medical genetics
information resource developed for physicians, other
healthcare providers, and researchers, available at no
cost to all interested persons. By providing current,
authoritative information on genetic testing and its use
in diagnosis, management, and genetic counseling,
GeneTests promotes the appropriate use of genetic
services in patient care and personal decision making
(text provided by the GeneTests website).
A comprehensive review of primary ciliary dyskinesia,
including up-to-date information on genetics, diagnosis
and best treatment practices is now available on the
Genetests website. This document has passed a rigorous
peer-review process and represents the body of
verifiable information about PCD to date. Information
will be updated on the site as it becomes available.
A Valuable Resource for Patients
With no written "best practices" guidelines, the
standard of care for PCD varies greatly. The GeneTests
PCD review is comprehensive, clearly written and
provides enough supporting evidence for its conclusions
to satisfy even the most skeptical care provider. As a
patient group, we recognize the need for aggressive
airway clearance therapy, culture-based antibiotic
intervention, etc., as do most of our physicians.
However, these needs are not necessarily recognized by
all care providers. The GeneTests PCD review will be
helpful in encouraging a consistent and appropriate
level of care for all PCD patients. I encourage you to
share this review with your personal physicians.
Click here for the review
About the PCD Foundation
The PCD (Primary Ciliary Dyskinesia) Foundation seeks
to promote research, increase public awareness, and
provide information and support services for individuals
with inherited ciliary disorders and their caregivers.
Website: http://www.pcdfoundation.org
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PCD Foundation
Michele Manion
Job Title
623-215-2032 612-396-1179
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