Lymphatic & Venous Disorders

The National Lymphatic Disease and Lymphedema Registry

The National Lymphatic Disease and Lymphedema Registry is an important research effort of the Lymphatic Research Foundation and Stanford University. The Registry operates under the guidance and direction of the Lymphatic Research Foundation Board of Directors and the  Institutional Review Boards of North Shore-Long Island Jewish Health System and Stanford University. The registry is housed at Stanford University under the direct supervision of Dr. Rockson.

This registry is a confidential database that contains information about individuals who carry the diagnosis of a lymphatic disease or of lymphedema. This comprehensive registry will serve as a repository of information that will enhance the future ability of health care professionals to accurately identify, categorize, treat and prevent these diseases.

Lymphatic diseases take a variety of forms, but, in general, they have the capacity to affect virtually every organ in the body. These lymphatic diseases include, but are not limited to, primary and secondary lymphedemas, lymphangiomas, cystic hygromas, lymphangiectasias, lymphangiomatosis, and syndromes of mixed lymphatic and vascular anomalies, along with a variety of other developmental disorders that influence lymphatic competence.

The goal of the registry is to acquire information about the characteristics of people affected by lymphatic diseases and lymphedema; to gain information on the natural history of lymphatic diseases and lymphedema; and to quantitate and characterize the impact of these diseases on those affected by them (and their families.) It is only through obtaining this information that we can hope to stimulate research interest and encourage the development of clinical trials that will benefit those individuals affected by the various lymphatic diseases.

In an effort to get the information required for a project such as this, much information needs to be obtained from you, the patient, our most important resource. Please understand that while this process may be time-consuming on your part, it is extremely necessary to try to complete the questionnaire in its entirety. Multiple consents may be required of you in order to assure both the confidentiality and integrity of this program. You will be able to log off this program and log on at a later date if you so require. You will also be able to save a hard copy of your responses at any time. We thank you in advance for your patience and appreciate your time commitment so essential to complete this important registry.

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