Registry for patients with lymphatic anomalies
Lymphatic Anomalies Registry for the Assessment of Outcome Data
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 |
|---|---|
| Enrollment | 1000 (estimated) |
| Sex | All |
| Sponsor | Boston Children's Hospital Academic / other |
| Locations | 1 site (Boston, Massachusetts) |
| Trial ID | NCT02399527 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates include individuals diagnosed with complex vascular tumors, malformations, or overgrowth syndromes that have a significant lymphatic component.
Not a fit: Patients without a clinical diagnosis of a lymphatic anomaly or those with unrelated conditions may not benefit from this registry.
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 performed: 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.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Clinical diagnosis of complex vascular tumor, malformation or overgrowth syndrome with significant lymphatic component
Where this trial is running
Boston, Massachusetts
- Boston Children's Hospital — Boston, Massachusetts, United States (Recruiting)
Study contacts
- Principal investigator: Melisa Ruiz-Gutierrez, M.D. — Boston Children's Hospital
- Study coordinator: Kelsey Deemer, BS
- Email: Lymphaticregistry@childrens.harvard.edu
- Phone: 617-355-5226
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.