๐ฌIn plain words
What the trial is, and whether it could suit you
Background:
The lymphatic system is a network of vessels that carry a clear fluid called lymph through the body. Problems in the lymphatic system can cause pain, fluid buildup, and issues with immunity. There is much researchers do not understand about lymphatic anomalies. In this natural history study, they will collect data from a lot of people over a long time.
Objective:
To better understand why lymphatic anomalies develop. The goal is to improve future treatments.
Eligibility:
People aged 0 days and older with a suspected or confirmed lymphatic anomaly. Their unaffected parents or siblings aged 7 years or older are also needed.
Design:
Participants may remain in the study indefinitely. Affected participants may be evaluated every 10 months to 2 years. Some participants will be seen over telemedicine. Others will be seen at the NIH Clinical Center for 2-5 days.
All participan
Sign in to get the eligibility rules as simple questions to take to your doctor.
๐ Eligibility rules (as published)
* 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.
National Institutes of Health Clinical Center
Bethesda, United States
Children's Hospital of Philadelphia
Philadelphia, United States
๐ค Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible โ always decide together with your own doctor.