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Natural History Study of Lymphatic Anomalies

This study is an observational study, meaning it doesn't test a new treatment but rather collects information to better understand lymphatic anomalies (problems with the body's fluid drainage system). Researchers want to learn more about why these conditions develop and how they progress over time. The goal is to improve future treatments and care for people with lymphatic anomalies. You may be able to join if you are between 1 day and 100 years old and have a current or suspected lymphatic anomaly. The study aims to follow participants over a long period, with primary goals of establishing a group of people with lymphatic anomalies and tracking when symptoms appear and how often they occur.

Study design
This is an observational study, not testing any specific intervention. It plans to enroll 1200 participants.
What's involved
Affected participants may be evaluated every 10 months to 2 years. You may remain in the study indefinitely.
Compensation
Not stated in the trial record.
Follow-up
The primary endpoints for this study are measured at 12/31/2028, indicating a long-term follow-up period.

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NCT05731141

A Prospective Natural History Study of Lymphatic Anomalies

Recruiting
Not specifiedAges 1+Observational
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
~1,200 participants
Updated 2026-08-06 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 2 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
To establish a longitudinal cohort of participants with lymphatic anomalies
Measured over 12/31/2028
+1 more outcome measured

Conditions

Lymphatic Diseases
Lymphatic Abnormalities

Explore related trials

Chylous effusionChylous Peritoneal EffusionComplex Lymphatic AnomalyDisorders of lymph node and lymphaticsGeneralized Lymphatic AnomalyGorham's diseaseKaposiform lymphangiomatosisLymphangiectasiaLYMPHATIC MALFORMATION 12LymphedemaProtein-losing enteropathy

Where it's being run

2 sites across 2 states
Maryland1
Pennsylvania1

Study leadership

  • Sarah E Sheppard, M.D. · PRINCIPAL_INVESTIGATOR · Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

Who to contact

Andrea I Bowling, C.R.N.P.
[email protected]
(301) 451-3824
Email the study team

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Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

Current or history of lymphatic anomaly or symptoms suggestive of a lymphatic disorder Or
An ill-defined vascular anomaly that is suspected to have an abnormal lymphatic component Or
A pathogenic, likely pathogenic, or VUS in a genetic disorder with a known lymphatic component Or
Clinical diagnosis of a syndrome with a known lymphatic component

Exclusion

Any condition, in the opinion of the investigator, that would increase risk of participation or impair their ability to comply with protocol requirements.
Any condition, in the opinion of the investigator, that would increase risk of participation or impair their ability to comply with protocol requirements.

What this trial measures

  • To establish a longitudinal cohort of participants with lymphatic anomalies12/31/2028

    We plan to enroll a group of participants willing to participate in the study over time.

  • To longitudinally determine the age at presentation and incidence of clinical features12/31/2028

    For each clinical feature or symptoms, the range of ages at the development of that feature/symptom and fraction of participants with that feature