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Priya S. Kishnani, MD
(Pediatrics)
James H. Heller, MA, MS,
CCC (Surgery)
Duke University Medical
Center
Title of Project:
Down Syndrome Registry Program
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Title of
Project: Down Syndrome Registry Program
Summary Of Project:
The Down Syndrome Registry Program is an 18 month planning grant to
establish a Down syndrome disease registry at
Duke University
Medical Center. The plan is a project to establish a
longitudinal, national, observational database that will track
outcomes of clinical practice for individuals with Down syndrome.
All physicians participating in the Registry are considered
participants of the Down syndrome Registry Program. Data
collected from these physicians will represent Down syndrome disease
practice patterns under common clinical conditions. The data
collected by this national collaborative Registry will provide
information to better characterize the natural history,
developmental progression and treatment outcomes associated with
individuals with Down syndrome.
Lay Summary Of
Project:
The Down syndrome registry is a database of medical information
on patients with Down syndrome that can be analyzed and used by
physicians treating patients with the same condition. The collective
information from the registry is used to increase the understanding
of the disease and to monitor patients over time, with the ultimate
goal of improving the clinical outcomes of patients. The
Registry Program is a project to establish a longitudinal, national,
observational database that will track outcomes of clinical practice
for individuals with Down syndrome. All physicians
participating in the Registry are considered participants of the
Down syndrome Registry Program. Data collected from these
physicians will represent Down syndrome disease practice patterns
under common clinical conditions. The data collected by this
national collaborative Registry will provide information to better
characterize the natural history, developmental progression and
treatment outcomes associated with individuals with Down syndrome.
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