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Contact Us
Please mail photos, text, audio cassette or video as applicable to |
PPH Cure Foundation
1735 Connecticut Ave., NW
3rd. Floor
Washington, DC 20009 |
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International Patient Database |
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During 1995 and 1996, the Foundation supported the organizational meetings of a
new collective group called the International Pulmonary Hypertension Research Consortium
(IPHRC). The purpose of the IPHRC is to develop an international database of diagnostic
data on PPH patients, including their tissue, fluid and DNA samples. Once completed,
researchers anywhere in the world can perform worthwhile research using samples
that are assuredly from patients with PPH. This would be a major development because
lung tissue samples are in particular difficult to obtain, and there is always difficulty
in ensuring that any sample is from a patient diagnosed with PPH as opposed to secondary
pulmonary hypertension.
With the Foundation's financial support, Dr. William Clarke, M.D., of the University
of Washington's Children's Hospital, has done a superb job of recruiting leading
PPH clinicians, pathologists and informatics experts. There is today the first version
of the IPHRC patient database entry form on the worldwide web, supported by the
Italian bioinformatics organization Cineca. Registration into the database of European
patients is scheduled to begin by November 1996.
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