Tracking Outcomes and Practice in Pediatric Pulmonary Hypertension

NCT ID: NCT02610660

Last Updated: 2023-04-13

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

Get a concise snapshot of the trial, including recruitment status, study phase, enrollment targets, and key timeline milestones.

Recruitment Status

COMPLETED

Total Enrollment

388 participants

Study Classification

OBSERVATIONAL

Study Start Date

2015-08-31

Study Completion Date

2022-12-31

Brief Summary

Review the sponsor-provided synopsis that highlights what the study is about and why it is being conducted.

The TOPP-2 registry is an international, non-interventional, prospective registry including children and adolescents newly diagnosed with pulmonary hypertension (PH) to gain further insights in the disease course and long-term outcome of PH in childhood.

Patients will undergo clinical assessments and receive standard medical care, as determined by treating physicians in their daily clinical practice. The TOPP-2 registry is specifically designed to capture the variables that have been proposed as treatment goals in PePH and the reasons for changes in treatment strategy.

The TOPP-2 registry uses the new clinical classification of PH as outlined at the 5th World Symposium for Pulmonary Hypertension (WSPH) in Nice 2013 and includes new characterizations for children with PH.

The registry is planned and implemented under the scientific leadership of the Association for Pediatric Pulmonary Hypertension (PePH), independently from the financial sponsors.

All enrolled patients will have a follow-up period of 18 months.

Detailed Description

Dive into the extended narrative that explains the scientific background, objectives, and procedures in greater depth.

Conditions

See the medical conditions and disease areas that this research is targeting or investigating.

Hypertension, Pulmonary

Study Design

Understand how the trial is structured, including allocation methods, masking strategies, primary purpose, and other design elements.

Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Eligibility Criteria

Check the participation requirements, including inclusion and exclusion rules, age limits, and whether healthy volunteers are accepted.

Inclusion Criteria

* Patient must be an incident patient, i.e.newly diagnosed with PH
* Age at time of diagnosis is at least 3 months and less than 18 years
* Patients must present with PH belonging to one of the following categories

* Group 1 according to updated Nice clinical classification
* Group 3 according to updated Nice clinical classification
* Group 4 according to updated Nice clinical classification
* Group 5 according to updated Nice clinical classification
* PH confirmed by heart catheterisation (HC)
* At HC, the patient must present with mean pulmonary arterial pressure (PAP) of at least 25 mmHg at rest, a pulmonary vascular resistance index (PVRi) equal to or below 3 Wood units\*m\^2 and mean pulmonary arterial wedge pressure (PAWP) below or equal to 15 mmHg
* In case of congenital heart disease (CHD) patients who had undergone palliative procedure or repair to close systemic to pulmonary shunt, the diagnosis of PH must have been confirmed by HC at least 6 months after surgery/palliative procedure took place
* For patients with PAH-CHD open shunt, only those considered not operable due to advanced pulmonary vascular disease are eligible
* Patients to be included into the registry, and/or their legal guardians, must give informed consent. Where applicable patients will be asked for their written assent
* Participating sites must agree to adhere to the recommendations of the WSPH 2015 Nice, Pediatric Taskforce.

Exclusion Criteria

* Patients belonging to Group 2 according to updated Nice clinical classification
Minimum Eligible Age

3 Months

Maximum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

Meet the organizations funding or collaborating on the study and learn about their roles.

Association for Pediatric Pulmonary Hypertension

OTHER

Sponsor Role lead

Responsible Party

Identify the individual or organization who holds primary responsibility for the study information submitted to regulators.

Responsibility Role SPONSOR

Principal Investigators

Learn about the lead researchers overseeing the trial and their institutional affiliations.

Dunbar Ivy, Prof

Role: STUDY_CHAIR

Association for Pediatric Pulmonary Hypertension

Locations

Explore where the study is taking place and check the recruitment status at each participating site.

Stanford Children's Hospital

Palo Alto, California, United States

Site Status

University of Colorado Denver School of Medicine, Children's Hospital Colorado

Aurora, Colorado, United States

Site Status

Children's National Medical Center

Washington D.C., District of Columbia, United States

Site Status

Emory University

Atlanta, Georgia, United States

Site Status

Boston Children's Hospital

Boston, Massachusetts, United States

Site Status

St Louis Children's Hospital

St Louis, Missouri, United States

Site Status

University of Nebraska Medical Center

Omaha, Nebraska, United States

Site Status

Columbia University Medical Center

New York, New York, United States

Site Status

Cincinnati Children's Hospital Medical Center

Cincinnati, Ohio, United States

Site Status

Vanderbilt University Children's Hospital

Nashville, Tennessee, United States

Site Status

Texas Children's Hospital

Houston, Texas, United States

Site Status

Primary Children's Hospital

Salt Lake City, Utah, United States

Site Status

Seattle Children's Hospital

Seattle, Washington, United States

Site Status

Royal Children's Hospital

Melbourne, , Australia

Site Status

University of São Paulo

São Paulo, , Brazil

Site Status

The Hospital for Sick Children

Toronto, Ontario, Canada

Site Status

Fu Wai Hospital

Beijing, , China

Site Status

Hospital Pediátrico La Misericordia

Bogotá, , Colombia

Site Status

Université Paris Descartes

Paris, , France

Site Status

University Children's Hospital Ulm

Ulm, , Germany

Site Status

Institute of Cardiology

Budapest, , Hungary

Site Status

Hadassah, Hebrew University Medical Center

Jerusalem, , Israel

Site Status

University of Padova

Padua, , Italy

Site Status

Toho Universit Omori Medical Center

Tokyo, , Japan

Site Status

Keio University

Tokyo, , Japan

Site Status

National Heart Institute

Mexico City, , Mexico

Site Status

Beatrix Children's Hospital, University Medical Center Groningen

Groningen, , Netherlands

Site Status

Children's Memorial

Warsaw, , Poland

Site Status

King Fahd Armed Forces Hospital

Jeddah, , Saudi Arabia

Site Status

The Queen Silvia's Children's Hospital

Gothenburg, , Sweden

Site Status

Hôpital des Enfants

Geneva, , Switzerland

Site Status

University Children's Hospital

Zurich, , Switzerland

Site Status

Countries

Review the countries where the study has at least one active or historical site.

United States Australia Brazil Canada China Colombia France Germany Hungary Israel Italy Japan Mexico Netherlands Poland Saudi Arabia Sweden Switzerland

Related Links

Access external resources that provide additional context or updates about the study.

https://www.peph-association.org/

Webpage of the Association for Pediatric Pulmonary Hypertension

Other Identifiers

Review additional registry numbers or institutional identifiers associated with this trial.

TOPP-2

Identifier Type: -

Identifier Source: org_study_id

More Related Trials

Additional clinical trials that may be relevant based on similarity analysis.