Lymphatic Anomalies Registry for the Assessment of Outcome Data

Part of paid clinical trials in Boston, Massachusetts.

Sponsor
Boston Children's Hospital
Study ID
NCT02399527
Status
Recruiting
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Conditions

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

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

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.

Key Dates

Start date
Jun 30, 2013
Status verified
Apr 2026
Primary completion
Jun 30, 2035
Completion
Jun 30, 2035

Study Design

Enrollment
1,000 participants (estimated)

Primary Outcome Measure

To characterize the heterogeneity of lymphatic disorders, including demographics, presentation, and complications. [ Time Frame: 15 years ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
Boston Children's HospitalBostonMassachusetts02115
Meghan O'Hare, CPNP
[email protected]
617-355-5226
Kelsey Deemer
[email protected]
617-355-5226
Melisa Ruiz-Gutierrez, M.D. (PRINCIPAL_INVESTIGATOR)

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