RUS-registry of PH

Summary

Russian National Registry of Patients With Pulmonary Arterial Hypertension (PAH) and Chronic Thromboembolic Pulmonary Hypertension (CTEPH) is a multicenter, observational study of the clinical course and disease management of PAH and CTEPH patients. designed to gather demographic, clinical and prognostic data of routine medical care in prospective manner for newly initiated treatment since Jan 2016.

The internet-based registry (www.medibase.pro) fulfills high quality standards through several measures (planned minimum centre contribution of at least 10 patients per year, automated plausibility checks of data at entry, queries, monitoring with source data verification in \>50% of participating centers).

All consecutive patients diagnosed with World Health Organization Pulmonary Hypertension Groups (WHO Group I) PAH according to specific hemodynamic criteria will be enrolled in participating centers after signing the informed consents. Participating patients will be followed for a minimum of five years from the time of enrollment.

It can be applied, among further purposes, for quality assurance: individual centers can confidentially compare their results with the combined outcome of the other centers. It is expected that the registry contributes to optimization of specific drug therapy for PAH and Pulmonary Hypertension (PH).

Conditions

• Pulmonary Hypertension

Interventions

DIAGNOSTIC_TEST

Right Heart Catheterization (RHC)

RHC at the enrollment and every 12 months

Sponsors & Collaborators

• Scientific Research Institute of Rheumatology

  collaborator UNKNOWN

• Russian Cardiology Research and Production Center

  lead OTHER

Principal Investigators

• Tamila Martynyuk, MD, PhD · Russian Cardiology Research and Production Center

• Irina Chazova, MD, PhD · Russian Cardiology Research and Production Center

• Olga Arkhipova, PhD · Russian Cardiology Research and Production Center

• Alexander Volkov, MD, PhD. · Institute of Rheumatology named after VA Nasonova, Moscow, Russia

• Vera Lukyantchikova, MD, PhD · Regional Clinical Hospital №1, Khabarovsk, Russia

• Elena Vetrova, PhD · Belgorod Regional Clinical Hospital, Belgorod, Russia

• Elena Devitiyarova, MD, PhD · Rostov Regional State CLINICAL HOSPITAL, Russia

• Olga Korolkova, MD, PhD · Department of Hospital Therapy of the Voronezh State Medical Academy. N. N. Burdenko, Voronezh, Russia

• Olga Andreyeva · State Healthcare Institution Regional Cardiology Dispensary, Ulyanovsk, Russia

• Svetlana Martynenko · Regional Budget Cardiology Dispensary, Astrakhan, Russia

• Elena Milovanova, PhD · District Cardiology Dispensary "Center for Diagnostic and Cardiovascular Surgery", Surgut, Russia

• Anna Rogacheva · State Future Health Care Institution "Primorskaya Regional Clinical Hospital № 1", Vladivostok, Russia

• Svetlana Kharitonova · State budgetary health care institution "Bryansk Regional Cardiology Dispensary", Bryansk, Russia

• Elena Shutemova, MD, PhD · IVANOVO STATE MEDICAL ACADEMY Department of Therapy and General Practice, Ivanovo, Russia

Eligibility

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2016-01-31

Primary Completion

2020-12-31

Completion

2021-01-31