Early Diagnosis Research

The Early Diagnosis Campaign was developed out of the need to eliminate delays in the diagnosis of pulmonary hypertension (PH) as identified by several PH registries established over the past decade.

NIH Registry

The National Institutes of Health-sponsored Patient Registry for the Characterization of Primary Pulmonary Hypertension (NIH-PPH) conducted in the early 1980s enrolled 187 primary pulmonary hypertension (PPH) patients. This registry reported a mean time from the onset of symptoms to diagnosis of 2.03 years ± 4.9 years (median 1.3 years). At the time of diagnosis, 71 percent of these patients were already suffering from advanced stages of the disease (functional class III or IV).

French Registry

In 2006, the French National Registry of Pulmonary Arterial Hypertension (PAH) published results, reporting that out of 674 patients seen from 2002-2003, the mean delay between the onset of symptoms and diagnosis was 2.25 years. Similar to the NIH study, 75 percent of patients were suffering from advanced stages of PAH (functional class III or IV) at the time of diagnosis.

REVEAL Registry

The Registry to Evaluate Early and Long-term Pulmonary Arterial Hypertension Disease Management (REVEAL Registry) is the largest registry of patients with PAH and is analyzing data of 2,525 adult PAH patients between 2006 and 2007. The mean time from symptom onset to diagnostic right-sided heart catheterization (RHC) was 2.8 years ± 1.2 months (median 1.1 years). Much like the previous two studies, 73.6 percent of patients whose PAH was confirmed had advanced PAH at the time of the diagnostic RHC.

Despite the growth in pulmonary hypertension research and treatments in the past decade, there remains an unacceptably long delay from the onset of symptoms to an accurate PH diagnosis. The Early Diagnosis Campaign aims to shorten this time from symptom onset to accurate diagnosis for the well-being of the PH community.

Source: The Early Diagnosis of Pulmonary Arterial Hypertension: Can We Do Better? (PDF) Harold I. Palevsky, MD, FCCP, (CHEST, 2011)

Recent Research on Early Diagnosis

PHA International White Paper: Pulmonary Arterial Hypertension: Recommendations for Improving Patient Outcomes (2011)

Delay in Recognition of Pulmonary Arterial Hypertension: Factors Identified From the REVEAL Registry (PDF)
Lynette M. Brown, MD, PhD, FCCP, et al (CHEST, 2011)

The Early Diagnosis of Pulmonary Arterial Hypertension: Can We Do Better? (PDF)
Harold I. Palevsky, MD, FCCP, (CHEST, 2011)

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.