Abstract
Background: Pulmonary Hypertension (PH) has been defined as an increase in mean pulmonary arterial pressure (PAP) ≥ 25 mmHg at rest as assessed by right heart catheterization.
The idiopathic form so called idiopathic pulmonary arterial hypertension iPAH is a fatal disorder with a prevalence of 8.6 per million of population.
In the current report we introduced a registry site for iPAH patients, named www.pah.ir for better delivery of subsidized antihypertensive medications (now only Bosentan).
Methods: The registry was opened since November 2009. The first step of this action is to add iPAH patient's information with a username and password in the site. Data entry is only available to the physicians and healthcare organizations via internet that are given a personalized username & password for entry. Following the patient's profile submission in the site, a scientific committee composed of a cardiologist and a pulmonologist who are selected by Ministry of Health (MOH), would then evaluate the data. The eligibility of the patient to receive the medications is announced in the site after evaluation. If a patient is eligible, 82% of bosentan cost is paid by MOH.
Results: Till now, one hundred and sixteen patients (82 females, 34 males) are registered. Measured mean pulmonary artery pressure by right heart catheterization was 69.24±17 mmHg (ranging from 35 to 110 mmHg).
Conclusion: The first online Iranian registry program for iPAH patients has recently been started and it is believed that this national program will supply essential information for health care providers in the field.
- © 2012 ERS