RECRUITING

Lymphatic Anomalies Registry for the Assessment of Outcome Data

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

Lymphatic anomalies are a rare subset of vascular anomalies that are poorly understood. the understanding of the natural history, long-term outcomes, risk factors for morbidity and mortality, and the relative benefit of medical therapies and procedures is limited.The goal of this project is to better understand these diseases and improve the care of theses rare patients. To do this, the investigators are conducting an observational study of patients with lymphatic anomalies, including an annual follow-up questionnaire to gather prospective data on mortality, morbidity, treatments, and functionality as well as quality of life.

Official Title

Lymphatic Anomalies Registry for the Assessment of Outcome Data

Quick Facts

Study Start:2013-06
Study Completion:2035-06
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT02399527

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:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Clinical diagnosis of complex vascular tumor, malformation or overgrowth syndrome with significant lymphatic component
  1. Pregnancy or breastfeeding
  2. Severe psychiatric disorders
  3. Active substance abuse
  4. Unstable medical conditions
  5. Inability to comply with study requirements

Contacts and Locations

Study Contact

Kelsey Deemer, BS
CONTACT
617-355-5226
Lymphaticregistry@childrens.harvard.edu
Meghan O'Hare, CPNP
CONTACT
617-355-5226
Lymphaticregistry@childrens.harvard.edu

Principal Investigator

Melisa Ruiz-Gutierrez, M.D.
PRINCIPAL_INVESTIGATOR
Boston Children's Hospital

Study Locations (Sites)

Boston Children's Hospital
Boston, Massachusetts, 02115
United States

Collaborators and Investigators

Sponsor: Boston Children's Hospital

  • Melisa Ruiz-Gutierrez, M.D., PRINCIPAL_INVESTIGATOR, Boston Children's Hospital

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 Date2013-06
Study Completion Date2035-06

Study Record Updates

Study Start Date2013-06
Study Completion Date2035-06

Terms related to this study

Keywords Provided by Researchers

  • Vascular Anomalies
  • Lymphatic Anomalies
  • Lymphatic Malformation

Additional Relevant MeSH Terms

  • Lymphatic Malformation
  • Generalized Lymphatic Anomaly (GLA)
  • Central Conducting Lymphatic Anomaly
  • CLOVES Syndrome
  • Gorham-Stout Disease ("Disappearing Bone Disease")
  • Blue Rubber Bleb Nevus Syndrome
  • Kaposiform Lymphangiomatosis
  • Kaposiform Hemangioendothelioma/Tufted Angioma
  • Klippel-Trenaunay Syndrome
  • Lymphangiomatosis