Pulmonary Hypertension Research Registries

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Research Registries for Pulmonary Hypertension

This page was written by Shelley Ensz, and has not been medically edited. Scleroderma (SD) affects everyone differently. Just because something is listed here does not mean an individual patient will ever experience it. See Disclaimer

PH Registry of Scleroderma (PHAROS)
Co-Therix Registry
SureSteps Patient Support Program

Scleroderma Research Registries
Pulmonary Support Organizations

Pulmonary Hypertension Registry of Scleroderma (PHAROS)

Pulmonary Hypertension Registry of Scleroderma (PHAROS) is a multicenter study of systemic scleroderma (systemic sclerosis) patients in the United States who are at high risk for developing pulmonary hypertension as well as those with newly diagnosed with pulmonary hypertension, by members of the Scleroderma Clinical Trial Consortium (SCTC). Posted 04-10-06. (Also see: PHAROS)

Overview of Research Registries
Overview of PHAROS Registry

How to Enroll
Related Links

CoTherix Registry

CoTherix to Initiate Clinical Registry to Study Pulmonary Arterial Hypertension. CoTherix, Inc. plans to initiate a first-of-its-kind national disease registry that will retrospectively and prospectively collect observational data to track and study the natural history and medical management of pulmonary arterial hypertension (PAH). PR Newswire. 10/24/05. (Also see: Research Registries)

SureSteps Patient Support Program for Tracleer/Bosentan Patients

SureSteps™ is a free patient support program for people who are on Tracleer/Bosentan.

Actelion Pharmaceuticals US, Inc. is pleased to announce the launch of Sure StepsTM, a comprehensive support program for U.S. patients enrolled in the Tracleer Access Program (T.A.P.). Sure StepsTM free services include one-to-one attention from a Nurse Counselor. Posted 11-08-06.

Bosentan For The Treatment Of Scleroderma. Includes comments about SureSteps™ program. Discussion started 12-02-06. Sclero Forums.

Scleroderma Research Registries

Overview of Research Registries
Scleroderma Experts
Pulmonary Hypertension Registry

Twins/Close Siblings Autoimmune U.K. Scleroderma Registries
U.S./Canada Scleroderma Registries

Pulmonary Support Organizations

Pulmonary Support Resources ISN.

The American Lung Association and Myogen Announce Pulmonary Arterial Hypertension (PAH) Educational Partnership. They will collaborate on a new public awareness initiative to educate the public about PAH, a progressive and life-threatening disease that affects an estimated 200,000 patients worldwide. WebWire. American Lung Assoc. 09/06/06.