Angel Flights Now Available for GDMCC Study
Participation
Rare Diseases Clinical Research Network
(RDCRN) Contracts with Travel Provider
Phoenix, AZ- June 16, 2007
RDCRN ANNOUNCEMENT:
"Angel Flight" service has been extended to
include all of the medical and research
facilities in the Rare Diseases Clinical
Research Network so that no patient is denied
medical access to ongoing research projects due
to lack of air transportation. About Angel
Flight: In 2003, the Office of Rare Diseases
(ORD) and the National Human Genome Research
Institute (NHGRI) joined with Angel Flight and
Mercy Medical Airlift to provide on-site travel
assistance at the National Institutes of Health
Clinical Center so more patients could
participate in leading-edge research and
treatment studies. Angel Flight is a free
service. Application forms for this service are
available on the PCD Foundation website
(www.pcdfoundation.org). Hard copies of the
forms may be obtained by contacting the PCD
Foundation at 623-215-2032.
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Study Details
What is the GDMCC?
The Genetic Disorders Of Mucociliary
Clearance Consortium is one of ten rare
disease research consortia (group with similar
goals) funded by the Office of Rare Diseases
(ORD) and the National Institutes of Health
(NIH). The GDMCC is a network of six North
American centers (University of North Carolina
at Chapel Hill, Washington University in St.
Louis, University of Washington, University of
Colorado, National Institute of Allergy and
Infectious Disease and The Hospital for Sick
Childen in Toronto) that are collaborating in
the diagnostic testing, genetic studies, and
clinical trials in patients with impairments in
mucociliary clearance, focusing on primary
ciliary dyskinesia, cystic fibrosis, and
pseudohypoaldosteronism. Ultimately, we hope to
better define the clinical pathogenesis of these
important airway diseases, improve or expand
diagnostic testing, and develop new and
effective treatments.
What is the
RDCRN?
The
Rare Diseases Clinical Research Network
is a collaborative
effort by the ORD; NCRR; National Heart, Lung
and Blood Institute; National Institute of Child
Health and Human Development; National Institute of
Neurological Disorders and Stroke; National
Institute of Arthritis and Musculoskeletal and Skin
Diseases; and National Institute of Diabetes and
Digestive and Kidney Diseases - all components of
NIH -- to devloped improved diagnostic methods and
treatments for rare diseases by facilitating the
translational research and collaboration between
investigators, patient support groups,and the NIH.
For More Information or to Enroll in a Study:
1. Check the RDCRN website (click on the link to
Genetic Disorders of
Mucociliary Clearance): http://rarediseasesnetwork.epi.usf.edu/.
2. Contact the PCD Foundation for more information.
3. Contact the University of North Carolina, Chapel
Hill:
godwine@med.unc.edu
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