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Research Registries for Pulmonary Hypertension

Author: Shelley Ensz. Scleroderma is highly variable. See Types of Scleroderma. Read Disclaimer
PH Research Panel (by WWMR)
PH Registry of Scleroderma (PHAROS)
REVEAL Registry for PH
SureSteps Patient Support Program
Scleroderma Research Registries

Pulmonary Support Organizations

Pulmonary Hypertension Research Panel in U.S. — Qualified participants will earn $50.00, plus opportunity to earn more!

WWMR a Division of IntrisiQ, LLC logoWWMR, a division of IntrinsiQ, is searching for patients diagnosed with PAH or their caregivers to serve on their research panel. Qualified participants will earn $50.00, plus the opportunity to earn more money by participating in future research studies. Participants must either be diagnosed with PAH, or be a caregiver for someone living with PAH. To learn more, and to see if you qualify, call WWMR toll free at 1-888-947-2339 and select option 4, or email PAH_Panel@wwmr.com.

Pulmonary Hypertension Registry of Scleroderma (PHAROS)

pharosPulmonary 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
Outcomes of PHAROS
How to Enroll
Related Links

REVEAL (Registry to Evaluate Early And Long-term PAH Disease Management)

Demographics and Outcomes of Patients Diagnosed With Pulmonary Hypertension (PAH) With Pulmonary Capillary Wedge Pressures (PCWP) 16 to 18 mm Hg. Insights from the REVEAL Registry. Patients with PCWP 16 to 18 mm Hg who were diagnosed and treated for PAH were older, heavier, and more likely to have comorbidities associated with left ventricular diastolic dysfunction. Five-year survival rates were similarly low for all PCWP subgroups. CHEST,January 2013, Vol 143, No. 1 (Also see: Pulmonary Hypertension Prognosis)
REVEAL Registry™: Registry to Evaluate Early And Long-term PAH (Pulmonary Arterial Hypertension) Disease Management. The REVEAL Registry will provide investigators with descriptive data regarding the clinical course and treatment outcomes in patients with WHO (World Health Organization) Group I PAH. Data derived from the study may offer important tools for assessing current management practices of treating investigators, as well as changes over time. This study is ongoing, but not recruiting participants. December 2009.

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.
Sclero Forums by the International Scleroderma NetworkBosentan For The Treatment Of Scleroderma. Includes comments about SureSteps™ program. Sclero Forums.

Scleroderma Research Registries

Overview of Research Registries
Registries for Rheumatic Diseases
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.
 
Go to Pulmonary Hypertension Research
 

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