SCLERO.ORG
Search

PHAROS: Pulmonary Hypertension Registry of Systemic Scleroderma (SSc) Patients in the U.S.

Author: Shelley Ensz. Scleroderma is highly variable. See Types of Scleroderma. Read Disclaimer
Overview
PHAROS Registry
PHAROS Outcomes
How to Enroll
Related Links

Overview of Research Registries

Join as many research registries as you possibly can!

You may join all of the research registries and quality of life studies that you are eligible for. It's not like clinical trials, where you are limited to just one. (Also see Scleroderma Research Registries)

Overview of PHAROS Registry

By Dr. Virginia Steen

I would like to tell you about a very important registy that members of the Scleroderma Clinical Trial Consortium (SCTC) are doing.

PHAROS: Pulmonary Hypertension Registry of Scleroderma, 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.

This is being coordinated by Dr. Virginia Steen at Georgetown University (in Washington, DC).

This is an extremely important study since pulmonary hypertension (PAH) is the most common cause of scleroderma deaths. It is looking specifically at patients who are at high risk for PAH, those who have specific abnormalities on pulmonary function tests (PFTs) or echocardiograms (ECGs) as well as those who are newly diagnosed with PAH.

Patients only need to see the study investigator yearly and they fill out questionnaires twice a year.

Outcomes of PHAROS Registry

Association between Initial Oral Therapy and Outcomes in Systemic Sclerosis-related Pulmonary Arterial Hypertension (SSc-PAH): Observations from PHAROS. Compared to phosphodiesterase-5 inhibitor (PDE5i) or combination endothelin-receptor antagonist (ERA)/PDE5i, initial therapy with an ERA in SSc-PAH patients was associated with a significantly worse time to clinical worsening. PubMed, Arthritis Rheumatol, 10/19/2015.

Development of pulmonary hypertension (PH) in a high risk population with systemic sclerosis in the Pulmonary Hypertension Assessment and Recognition of Outcomes in Scleroderma (PHAROS) cohort study. A low DLco, high FVC/DLco, exercise-induced hypoxia and entry echo sPAP arrow 40 were strongly associated with future PH. Seminars in Arthritis and Rheumatism, 03/07/2014. (Also see Pulmonary Hypertension Diagnosis)

How to Enroll

Patients are encouraged to contact Dr. Steen at [email protected] if they have pulmonary hypertension and would like to participate in this registry.

ISN Scleroderma Research Fund. Support research conducted by the Scleroderma Clinical Trials Consortium through this special fund, in conjunction with the nonprofit International Scleroderma Network! ISN.

Pulmonary Hypertension. ISN.

Scleroderma Clinical Trial Consortium (SCTC). SCTC.

Scleroderma Experts. ISN.

Scleroderma Research Registries. ISN.

What is Scleroderma? ISN.

Page Notes

This page was first posted 04-10-06 at the request of Dr. Virginia Steen. SLE.

Go to UK Scleroderma Registry
 
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including memorials for
Frances Maude Baldwin Watson, Rubye Mai Blocker Westmoreland.
Thanks to Tamika Forteau and Paul and Margaret Phifer for raising scleroderma awareness!
Donate or Shop Now
 

TOLL FREE HOTLINE, U.S. and Canada: 1-800-564-7099
Ask for our Free Info Packet by email or postal mail!

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
Email [email protected] to request our Welcome email, or to report bad links or to update this page content. Privacy Policy.
 

The most important thing in the world to know about scleroderma is sclero.org!

Donate Now
Copyright 1998-2017, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.