Understanding lymphatic anomalies over time

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to collect and analyze data on individuals with lymphatic anomalies to better understand the development and long-term outcomes of these conditions. Participants, including those affected and their unaffected family members, will undergo evaluations and provide biological specimens over an extended period. The study seeks to establish a longitudinal cohort, identify clinical features, and explore genetic factors associated with lymphatic diseases. By systematically documenting these anomalies, the research aims to improve prognostication and inform future treatment strategies.

Why it matters

Who can join: the full rules

* INCLUSION CRITERIA:

Affected (Proband)

In order to be eligible to participate in this study, an individual must meet one of the following criteria as determined after review of medical history:

* 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

Unaffected (First Degree Relatives: Parents and Siblings)

Genetic variants underlying complex lymphatic anomalies can be passed down through parents or be new in a child (de novo). Inclusion of first-degree relatives will assist in genetic analysis to delineate whether the variant is inherited or de novo.

To be eligible to participate as a first degree relative in this study, an individual must be a first-degree family member of an affected participants

EXCLUSION CRITERIA:

Affected Proband

An individual who meets any of the following criteria will be excluded from participation in this study after review of medical history, concomitant medication and allergy review, anthropometrics, and performance status:

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

Lymphatic anomalies that are definitively determined to be secondary by the principal investigator will be excluded from this study. For example, participants who develop a lymphedema after breast cancer surgery.

Unaffected (First Degree Relatives)

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

Where it's running

• National Institutes of Health Clinical Center
  Bethesda, Maryland, United States Recruiting
• Children's Hospital of Philadelphia
  Philadelphia, Pennsylvania, United States Not yet recruiting

Study contacts

• Principal investigator: Sarah E Sheppard, M.D. — Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
• Study coordinator: Andrea I Bowling, C.R.N.P.
• Email: nichd_lymphaticanoma@mail.nih.gov
• Phone: (301) 451-3824

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• European registry of lymphatic interventions for people with congenital heart disease or primary lymphatic disorders

  This registry will collect how lymphatic imaging and procedures like embolization are used and see if earlier targeted treatment helps people with congenital heart disease or primary lymphatic disorders.

  Recruiting Copenhagen University Hospital, Rigshospitalet · Copenhagen · NCT07131293

• 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.

  Recruiting Fondazione Policlinico Universitario Agostino Gemelli IRCCS · Roma · NCT06892964

• Infusion of unlicensed umbilical cord blood cells for treatment

  This study is testing whether infusing unlicensed umbilical cord blood cells can help people with lymphatic diseases or blood cancers recover after their treatment.

  Recruiting Masonic Cancer Center, University of Minnesota · Minneapolis, Minnesota · NCT01451502

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.