PHA Pathlight Winter 2015 - (Page 1)
A newsletter of the Pulmonary Hypertension Association
0 Winter 2015 0 Volume 24 No. 1
Ask a PH Specialist
PH Care Centers reviewers conduct the first Pilot Site visit at Inova
Fairfax Hospital in February 2014.
Advancing the Cause 15
Advocacy in Action
Community Classroom 33
New PHCC Patient Registry Will Boost
Value of Accreditation Initiative
s interest in the PHA-accredited
Pulmonary Hypertension Care
Centers (PHCC) initiative grows
within the medical community, a new
element - the PHCC Patient Registry
- has been conceived to further
strengthen the value of the PHCC
Recently approved by PHA's
Board of Trustees, the PHCC Patient
Registry is designed to collect data
that point to best practices in the
treatment of pulmonary hypertension.
The expectation is that data collected
through the registry will lead to
improved quality of life for PH patients
as well as prolonged survival.
Still in the planning stage,
when launched, the registry will track
diagnostic and treatment patterns at
a national level, and the data should
lead to a better understanding of the
impact of evidence-based guidelines
on health outcomes. Patients from
accredited PHCCs will be asked for
their informed consent before their
data is included in the PHCC Patient
Registry. Only patients who are new to
a PH Care Center will be included as
a means of accruing more concrete,
meaningful longitudinal data.
The value of this initiative is
clearly seen by Diane Ramirez, a PH
patient and representative serving
on the PHCC Oversight Committee.
According to Diane, "It is very
important for newly diagnosed patients
to enter into research like the PHCC
Patient Registry as soon as possible.
The PHCC Registry will promote
uniformity of care, improve a patient's
quality of life, and foster research
that could lead to a cure. As a patient
myself, I couldn't ask for more."
PHCC ARTICLE CONTINUED ON PAGE 10
Table of Contents for the Digital Edition of PHA Pathlight Winter 2015
PHA Pathlight Winter 2015