Lymphatic Anomalies Registry for the Assessment of Outcome Data

Status: Recruiting
Location: See location...
Study Type: Observational
SUMMARY

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.

Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:

• Clinical diagnosis of complex vascular tumor, malformation or overgrowth syndrome with significant lymphatic component

Locations
United States
Massachusetts
Boston Children's Hospital
RECRUITING
Boston
Contact Information
Primary
Kelsey Deemer, BS
Lymphaticregistry@childrens.harvard.edu
617-355-5226
Backup
Meghan O'Hare, CPNP
Lymphaticregistry@childrens.harvard.edu
617-355-5226
Time Frame
Start Date: 2013-06
Estimated Completion Date: 2035-06
Participants
Target number of participants: 1000
Authors
Cameron Trenor, Denise Adams
Sponsors
Collaborators: Lymphatic Malformation Institute
Leads: Boston Children's Hospital

This content was sourced from clinicaltrials.gov