Registry for patients with lymphatic anomalies
Official title: Lymphatic Anomalies Registry for the Assessment of Outcome Data
Run by Boston Children's Hospital · NCT02399527 · Data updated 2026-11-12
This study is collecting information from people with lymphatic anomalies to see how these conditions affect their health and treatment over time.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 1000 (estimated) |
| Sponsor | Boston Children's Hospital Academic / other |
| Locations | 1 site (Boston, Massachusetts) |
| Status | Recruiting |
| Started | June 2013 |
| Main results expected | June 2035 |
| Study ends | June 2035 |
| Registry record updated | September 10, 2026 |
| Trial ID | NCT02399527 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include individuals diagnosed with complex vascular tumors, malformations, or overgrowth syndromes that have a significant lymphatic component.
✕Probably not a fit
Patients without a clinical diagnosis of a lymphatic anomaly or those with unrelated conditions may not benefit from this registry.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This registry aims to collect and analyze data on patients diagnosed with various lymphatic anomalies, including conditions like Gorham-Stout Disease and CLOVES Syndrome. Participants will undergo a brief interview and provide access to their medical records to help researchers understand the natural history, outcomes, and treatment responses associated with these rare conditions. The registry will facilitate annual follow-ups to gather ongoing data on patient health, treatments, and quality of life. By creating a comprehensive database, the project seeks to improve care and predict responses to therapies for patients with lymphatic anomalies.
Why it matters
Potential benefit: If successful, this registry could enhance understanding and management of lymphatic anomalies, leading to improved patient outcomes.
How similar studies have gone: While this registry approach is relatively novel for lymphatic anomalies, similar registries for other rare conditions have shown success in improving patient care and outcomes.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Clinical diagnosis of complex vascular tumor, malformation or overgrowth syndrome with significant lymphatic component
Where it's running
-
Boston Children's Hospital
Boston, Massachusetts, United States Recruiting
Study contacts
- Principal investigator: Marilyn Liang, M.D. — Boston Children's Hospital
- Study coordinator: Kelsey Deemer, BS
- Email: Lymphaticregistry@childrens.harvard.edu
- Phone: 617-355-5226
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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KP-001 vs placebo for vascular and lymphatic malformations in children and adults
This trial tests whether KP-001 helps reduce symptoms in people aged 2 and older with common venous or lymphatic malformations or KTS/CLOVES, compared with a placebo.
-
Treatment for PIK3CA-related overgrowth and malformations using RLY-2608
This study is testing a new treatment called RLY-2608 to see if it can help adults and children with PIK3CA-related overgrowth and malformations feel better.
-
Identifying biomarkers for vascular anomalies
This study is trying to find simple blood tests that can help doctors better diagnose and treat patients with rare blood vessel problems like Generalized Lymphatic Anomaly and Gorham-Stout Disease.
-
Registry and biobank for lymphatic malformations in Italy
This study is creating a registry and biobank to collect information and samples from people with lymphatic malformations in Italy to improve understanding and treatment of these rare conditions.
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Using sirolimus to treat cystic lymphatic malformations in children
This study is testing different doses of sirolimus to see if it can safely help children with cystic lymphatic malformations.
-
Using Bleomycin for treating lymphatic malformations in children
This study is testing whether different strengths of Bleomycin can safely treat lymphatic malformations in children under 14 that can't be removed with surgery.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.