First Results From a National Registry for Pulmonary Hypertension in Russia

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PH registry in RussiaInitial results are now available from a national registry that has been established in Russia to track individuals with pulmonary hypertension (PH), including chronic thromboembolic pulmonary hypertension (CTEPH). The research was published in Russian in the journal Terapevticheskii Arkhiv (translated to Therapeutic Archive).

PH is a serious disease involving high blood pressure of the lungs due to capillary narrowing, which worsens over time and can be fatal. PH is not curable but it can be managed. CTEPH refers to PH lasting six months or longer and is characterized by lung blood clots.

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According to a translation from the recent report, researchers established the PH registry in Russia “to examine the demographic and clinical characteristics of patients with pulmonary hypertension (PH) and chronic thromboembolic pulmonary hypertension (CTEPH), regions of their residence, the specific features of diagnosis and drug therapy, and the patients’ survival within the framework of a multicenter open-label prospective study.”

Nine expert centers in Russia collected and analyzed data for the study. Information about patients with PH and CTEPH were collected at the website: Using this method, the registry obtained information from 242 patients (183 women and 59 men) from 44 regions within Russia.

The researchers identified different specific subtypes of PH. This included including 43.8% of the patients with idiopathic (unknown cause) PH, 28.5% with congenital heart disease-associated PH, 6.2% with diffuse connective tissue-associated PH, 0.8% with hereditary PH; and 20.7% with diagnosed with CTEPH.

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Additional valuable information was obtained using the registry including patients’ mean age (43) and the median PH duration, lasting 4.4 years. The researchers also determined the averages for several clinical measurements of walking and heart function.

Russian PH researcherOne of the most important pieces of information was the identification of commonly occurring conditions that tend to go along with PH. Erosive ulcerative lesion of the gastrointestinal tract was most frequently seen (23.5%), followed by hypertension (16.9%), and obesity (16.5%).

Many of the patients in the registry (66%) were taking medication for PH. These included sildenafil (51.6%), bosentan (20.9%), or iloprost (7%).

Some of the patients took combination therapy for PH (17.7%). In terms of broad drug classes, 55.8% were taking calcium antagonists, 61.4% diuretics, and 85.6% antithrombotic drugs.

The authors of this report concluded that “The formation of a national register of patients with PH and CTEPH makes it possible to introduce current approaches to diagnosing and treating the patients of this category and to evaluate the efficiency and quality of rendered medical care and will contribute to the estimation of required health care volumes and the expenditure of public health resources.”

This new registry and method for collecting data about PH will hopefully improve identification and treatment of PH in Russia, and could provide a model for similar data collection about PH in other countries.