|PH Research Panel (by WWMR)
PH Registry of Scleroderma (PHAROS)
REVEAL Registry for PH
| Scleroderma Research Registries
Pulmonary Support Organizations
WWMR, 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 [email protected].
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)
|How to Enroll
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. (Also see Pulmonary Hypertension Prognosis)
Bosentan For The Treatment Of Scleroderma. Includes comments about SureSteps™ program. Sclero Forums.
Pulmonary Hypertension Registry
|Twins/Close Siblings Autoimmune
U.K. Scleroderma Registries
U.S./Canada Scleroderma Registries
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.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
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