Pediatric Pulmonary Hypertension Network (PPHNet) Informatics Registry

Description

Patients are being asked to be in this research study because medical researchers hope that by gathering information about a large number of children with pulmonary hypertension over time, their understanding of the disease process will increase and lead to better treatment. Investigators believe that pulmonary hypertension in children is different than pulmonary hypertension in adults and this study will help us understand those differences.

Conditions

Pulmonary Vascular Disease, Pulmonary Arterial Hypertension

Study Overview

Study Details

Study overview

Patients are being asked to be in this research study because medical researchers hope that by gathering information about a large number of children with pulmonary hypertension over time, their understanding of the disease process will increase and lead to better treatment. Investigators believe that pulmonary hypertension in children is different than pulmonary hypertension in adults and this study will help us understand those differences.

Pediatric Pulmonary Hypertension Network (PPHNet) Informatics Registry

Pediatric Pulmonary Hypertension Network (PPHNet) Informatics Registry

Condition
Pulmonary Vascular Disease
Intervention / Treatment

-

Contacts and Locations

Palo Alto

Stanford University Medical center, Palo Alto, California, United States,

San Francisco

University California San Francisco, San Francisco, California, United States,

Aurora

Children's Hospital Colorado, Aurora, Colorado, United States, 80045

Boston

Boston Children's Hospital, Boston, Massachusetts, United States,

New York

Columbia University Medical Center, New York, New York, United States,

Philadelphia

Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States,

Nashville

Vanderbilt University Medical Center, Nashville, Tennessee, United States,

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • * The subject's age of onset of pulmonary hypertension must be prior to age 18 years
  • * The person providing consent must be able to read either Spanish or English.
  • * The subject (and/or parent/legal guardian) must be able to provide informed consent
  • * Diagnosed with pulmonary hypertension after age 18
  • * Refusal to sign informed consent

Ages Eligible for Study

1 Day to 21 Years

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

University of Colorado, Denver,

Steven H Abman, MD, PRINCIPAL_INVESTIGATOR, Children's Hospital Colorado

David D Ivy, MD, PRINCIPAL_INVESTIGATOR, Children's Hospital Colorado

Kenneth D Mandl, MD, PRINCIPAL_INVESTIGATOR, Boston Children's Hospital, Harvard School of Medicine

Jeffrey Fineman, MD, PRINCIPAL_INVESTIGATOR, University California San Francisco

Jeffrey Feinstein, MD, PRINCIPAL_INVESTIGATOR, Stanford University

Ian Adatia, MD, PRINCIPAL_INVESTIGATOR, University of Alberta Edmonton

Catherine Avitabile, MD, PRINCIPAL_INVESTIGATOR, Children's Hospital of Philadelphia

Mary Mullen, MD, PRINCIPAL_INVESTIGATOR, Boston Children's Hospital

Eric Austin, MD, PRINCIPAL_INVESTIGATOR, Vanderbilt University Medical Center

Marc Natter, MD, PRINCIPAL_INVESTIGATOR, Boston Children's Hospital

Erika Rosenzweig, MD, PRINCIPAL_INVESTIGATOR, Columbia University

Study Record Dates

2031-12