RECRUITING

Pediatric Pulmonary Hypertension Network (PPHNet) Informatics Registry

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Conditions

Pulmonary Vascular DiseasePulmonary Arterial HypertensionPulmonary Arterial Hypertension (PAH)Pulmonary Vascular Disease (PVD)RegistryPediatric

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Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

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.

Official Title

Pediatric Pulmonary Hypertension Network (PPHNet) Informatics Registry

Quick Facts

Study Start:2014-10
Study Completion:2031-12
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT02249923

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.

Ages Eligible for Study:1 Day to 21 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT
Inclusion CriteriaExclusion Criteria
  1. * The subject's age of onset of pulmonary hypertension must be prior to age 18 years
  2. * The person providing consent must be able to read either Spanish or English.
  3. * The subject (and/or parent/legal guardian) must be able to provide informed consent
  1. * Diagnosed with pulmonary hypertension after age 18
  2. * Refusal to sign informed consent

Contacts and Locations

Study Contact

Steven Abman, MD
CONTACT
303-881-9765
steven.abman@uanschutz.org
Robin Mascotti
CONTACT
303-724-6513
robin.mascotti@childrenscolorado.org

Principal Investigator

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 Locations (Sites)

Stanford University Medical center
Palo Alto, California
United States
University California San Francisco
San Francisco, California
United States
Children's Hospital Colorado
Aurora, Colorado, 80045
United States
Boston Children's Hospital
Boston, Massachusetts
United States
Columbia University Medical Center
New York, New York
United States
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania
United States
Vanderbilt University Medical Center
Nashville, Tennessee
United States

Collaborators and Investigators

Sponsor: 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

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2014-10
Study Completion Date2031-12

Study Record Updates

Study Start Date2014-10
Study Completion Date2031-12

Terms related to this study

Keywords Provided by Researchers

  • Pulmonary Arterial Hypertension (PAH)
  • Pulmonary Vascular Disease (PVD)
  • Registry
  • Pediatric

Additional Relevant MeSH Terms

  • Pulmonary Vascular Disease
  • Pulmonary Arterial Hypertension