Health TrialsbyHealthPanel

Lymphatic Anomalies Registry for the Assessment of Outcome Data

ConditionsLymphatic MalformationGeneralized Lymphatic Anomaly (GLA)Central Conducting Lymphatic AnomalyCLOVES SyndromeGorham-Stout Disease ("Disappearing Bone Disease")Blue Rubber Bleb Nevus SyndromeKaposiform LymphangiomatosisKaposiform Hemangioendothelioma/Tufted AngiomaKlippel-Trenaunay SyndromeLymphangiomatosis
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorBoston Children's Hospital

About this trial

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 criteria

This trial does not accept healthy volunteers

Qualifiers

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

Disqualifiers

None

Trial population

Both domestic and international patients with complex lymphatic anomalies, as described above, are eligible to participate. Travel to Boston is not required for participation. Eligible patients are identified through active referral in the Vascular Anomalies Center at Boston Children's Hospital. Physicians and patients may also refer eligible patients directly to the Lymphatic Anomalies Registry. Patients may indicate interest in participation themselves by contacting the registry team through the "Contact Us" link on www.lymphaticregistry.org.

Trial design

Design model

Cohort

Time perspective

Prospective

Treatments tested in this trial

Not listed

Trial groups

No trial groups listed

Trial outcomes

Primary outcomes

1

To characterize the heterogeneity of lymphatic disorders, including demographics, presentation, and complications.

Time frame
15 years
2

To identify factors that are prognostic of the occurrence of complications, including effusions, coagulopathy, ectatic draining veins, prior infections, visceral involvement, bone involvement, and development of cardiopulmonary symptoms.

Time frame
15 years
3

To identify factors prognostic of poor outcome and use them to develop "staging" of lymphatic anomalies.

Time frame
15 years
4

To describe the natural history of lymphatic anomalies, including morbidity and mortality.

Time frame
15 years

Secondary outcomes

1

To estimate the proportion of time that patients with lymphatic anomalies have affected offspring.

Time frame
15 years
2

To assess for correlations of pregnancy complications or medications taken during pregnancy with the development of lymphatic anomalies.

Time frame
15 years

Other outcomes

Sponsors and contacts

Click on the lead sponsor to view all of their trials.

Boston Children's Hospital

Lead sponsor

Lymphatic Malformation Institute

Collaborator

Source ClinicalTrials.gov
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