Why the Patient Registry and Tissue Bank are important to you
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 developmmental disorders that influence lymphatic competence.
The National Lymphatic Disease Patient Registry and Tissue Bank will include a representative and well-characterized population of patients, with associated biological materials (blood and tissue samples), to serve as a source for the clinical and laboratory study of lymphatic diseases. 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. The tissue bank will facilitate the availability of blood samples to lymphatic investigators for prospective research including genetic and proteomic studies.
We invite you to participate in this highly significant development for the patient community. A national patient registry paves the way for future clinical trials of experimental drugs and therapies designed to treat lymphatic diseases. We encourage all patients to participate in this important initiative. While this process may be time-consuming, please try to complete the questionnaires in their 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.
It is extremely important to this project that we are able to obtain information from your Health Care Professional. We strongly encourage you to speak to your Health Care Professional and sign a Medical Record release so that more information can be obtained about the natural history of your medical condition.
The Registry operates under the guidance and direction of the Lymphatic Education & Research Network Board of Directors, the Institutional Review Boards of North Shore-Long Island Jewish Health System and Stanford University.