RUS-registry of PH

NCT ID: NCT03707561

Last Updated: 2018-10-25

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

UNKNOWN

Total Enrollment

200 participants

Study Classification

OBSERVATIONAL

Study Start Date

2016-01-31

Study Completion Date

2021-01-31

Brief Summary

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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).

Detailed Description

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Russian National Registry of Patients With Pulmonary Arterial Hypertension and Chronic Thromboembolic Pulmonary Hypertension (RUS-registry of PH) will report current and comprehensive data on

* Demographics, clinical course of incident PAH and CTEPH, the hemodynamic and functional status of patients
* The main diagnostic approaches for the diagnosis of PAH and CTEPH.
* Patient outcomes including survival, by subgroup, by treatment strategy and other factors
* Clinical predictors of short-term and long-term clinical outcomes
* Relationship between PAH- treatment medications and patient outcomes
* Temporal trends in treatments and outcomes for newly diagnosed patients
* The state of implementation of current PAH guidelines
* To describe the status of operable or non-operable patients with PAH and CTEPH
* To identify the most important prognostic indicators in patients with PH.
* To study the basic principles of therapy of patients with PH.patients
* To evolve research needs of the PAH community

Conditions

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Pulmonary Hypertension

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Group 1 - IPAH and heritable PAH

Idiopathic pulmonary arterial hypertension (IPAH) and heritable PAH Diagnostic Test: Right Heart Catheterization (RHC)

Right Heart Catheterization (RHC)

Intervention Type DIAGNOSTIC_TEST

RHC at the enrollment and every 12 months

Group 2- PAH associated with CHD

Pulmonary arterial hypertension associated with congenital heart disease Diagnostic Test: Right Heart Catheterization (RHC)

Right Heart Catheterization (RHC)

Intervention Type DIAGNOSTIC_TEST

RHC at the enrollment and every 12 months

Group 3- PAH associated with CTD

Pulmonary Arterial Hypertension associated with Connective Tissue Diseases Diagnostic Test: Right Heart Catheterization (RHC)

Right Heart Catheterization (RHC)

Intervention Type DIAGNOSTIC_TEST

RHC at the enrollment and every 12 months

Group 4- portoPH

Portopulmonary hypertension

No interventions assigned to this group

group 5- PAH-HIV

Pulmonary arterial hypertension associated with HIV infection

No interventions assigned to this group

group 6- operable CTEPH

Operable chronic thromboembolic pulmonary hypertension Diagnostic Test: Right Heart Catheterization (RHC)

Right Heart Catheterization (RHC)

Intervention Type DIAGNOSTIC_TEST

RHC at the enrollment and every 12 months

group 7- non-operable CTEPH

Non operable chronic thromboembolic pulmonary hypertension Diagnostic Test: Right Heart Catheterization (RHC)

Right Heart Catheterization (RHC)

Intervention Type DIAGNOSTIC_TEST

RHC at the enrollment and every 12 months

Interventions

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Right Heart Catheterization (RHC)

RHC at the enrollment and every 12 months

Intervention Type DIAGNOSTIC_TEST

Eligibility Criteria

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Inclusion Criteria

Newly diagnosed PAH:

idiopathic form (IPAH) or PAH associated with connective tissue diseases (PAH-CTD), with congenital heart defects (PAH-CHD), with HIV infection (PAH-HIV), or portopulmonary hypertension Newly diagnosed CTEPH- operable and non-operable

Documentation of the following hemodynamic parameters by right heart catheterization, performed at the time of study enrollment:

Mean pulmonary arterial pressure (mPAP) ≥ 25 mm Hg at rest Pulmonary wedge pressure \< 15 mm Hg Pulmonary vascular resistance (PVR) ≥ 240 dynes.sec.cm-5 (i.e., ≥ 3.0 Wood units) Signed informed consent Previously naïve patients with newly initiated therapy with endothelin receptor antagonists (ERA), phoshodiesterase-5 (PDE-5) inhibitors, soluble guanylate cyclase (sGC) stimulators or prostacyclins in mono- or combination therapy.
Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Scientific Research Institute of Rheumatology

UNKNOWN

Sponsor Role collaborator

Russian Cardiology Research and Production Center

OTHER

Sponsor Role lead

Responsible Party

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Tamila V. Martynyuk, MD, PhD

Russian Cardiology Research and Production Center

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Tamila Martynyuk, MD, PhD

Role: PRINCIPAL_INVESTIGATOR

Russian Cardiology Research and Production Center

Irina Chazova, MD, PhD

Role: STUDY_CHAIR

Russian Cardiology Research and Production Center

Olga Arkhipova, PhD

Role: STUDY_DIRECTOR

Russian Cardiology Research and Production Center

Alexander Volkov, MD, PhD.

Role: STUDY_DIRECTOR

Institute of Rheumatology named after VA Nasonova, Moscow, Russia

Vera Lukyantchikova, MD, PhD

Role: STUDY_DIRECTOR

Regional Clinical Hospital №1, Khabarovsk, Russia

Elena Vetrova, PhD

Role: STUDY_DIRECTOR

Belgorod Regional Clinical Hospital, Belgorod, Russia

Elena Devitiyarova, MD, PhD

Role: STUDY_DIRECTOR

Rostov Regional State CLINICAL HOSPITAL, Russia

Olga Korolkova, MD, PhD

Role: STUDY_DIRECTOR

Department of Hospital Therapy of the Voronezh State Medical Academy. N. N. Burdenko, Voronezh, Russia

Olga Andreyeva

Role: STUDY_DIRECTOR

State Healthcare Institution Regional Cardiology Dispensary, Ulyanovsk, Russia

Svetlana Martynenko

Role: STUDY_DIRECTOR

Regional Budget Cardiology Dispensary, Astrakhan, Russia

Elena Milovanova, PhD

Role: STUDY_DIRECTOR

District Cardiology Dispensary "Center for Diagnostic and Cardiovascular Surgery", Surgut, Russia

Anna Rogacheva

Role: STUDY_DIRECTOR

State Future Health Care Institution "Primorskaya Regional Clinical Hospital № 1", Vladivostok, Russia

Svetlana Kharitonova

Role: STUDY_DIRECTOR

State budgetary health care institution "Bryansk Regional Cardiology Dispensary", Bryansk, Russia

Elena Shutemova, MD, PhD

Role: STUDY_DIRECTOR

IVANOVO STATE MEDICAL ACADEMY Department of Therapy and General Practice, Ivanovo, Russia

References

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Chazova IE, Martynyuk TV. [Clinical guidelines for the diagnosis and treatment of chronic thromboembolic pulmonary hypertension (Part 1)]. Ter Arkh. 2016;88(9):90-101. doi: 10.17116/terarkh201688990-101. Russian.

Reference Type BACKGROUND
PMID: 27735920 (View on PubMed)

Chazova IE, Martynyuk TV. [Clinical guidelines for the diagnosis and treatment of chronic thromboembolic pulmonary hypertension (Part 2)]. Ter Arkh. 2016;88(10):63-73. doi: 10.17116/terarkh201688663-73. Russian.

Reference Type BACKGROUND
PMID: 27801422 (View on PubMed)

Chazova IE, Avdeev SN, Tsareva NA, Volkov AV, Martyniuk TV, Nakonechnikov SN. [Clinical guidelines for the diagnosis and treatment of pulmonary hypertension]. Ter Arkh. 2014;86(9):4-23. Russian.

Reference Type BACKGROUND
PMID: 25518501 (View on PubMed)

Taran IN, Belevskaya AA, Saidova MA, Martynyuk TV, Chazova IE. Initial Riociguat Monotherapy and Transition from Sildenafil to Riociguat in Patients with Idiopathic Pulmonary Arterial Hypertension: Influence on Right Heart Remodeling and Right Ventricular-Pulmonary Arterial Coupling. Lung. 2018 Dec;196(6):745-753. doi: 10.1007/s00408-018-0160-4. Epub 2018 Sep 4.

Reference Type RESULT
PMID: 30182153 (View on PubMed)

Chazova IE, Arkhipova OA, Valieva ZS, Nakonechnikov SN, Martyniuk TV. [Pulmonary hypertension in Russia: the first results of the national register]. Ter Arkh. 2014;86(9):56-64. Russian.

Reference Type RESULT
PMID: 25518507 (View on PubMed)

Related Links

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https://doi.org/10.1097/01.hjh.0000467958.52984.9f

First date of Russian national registry of pulmonary arterial hypertension

Other Identifiers

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NMIC for Cardiology

Identifier Type: -

Identifier Source: org_study_id

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