Lymphedema
Conditions
Keywords
Lymphatic disease, Lymphedema, Lymphangiomatosis, Lymphangiectasia, Protein-losing enteropathy, Vascular Anomalies
Brief summary
The purpose of the International Lymphatic Disease and Lymphedema Patient Registry and Biorepository is to collect health information in order to study the disease classification, natural history, and impact of Lymphatic Disease, Lymphedema and Related Disorders and its treatments and medical outcomes.
Detailed description
This project represents the inauguration of an International Patient Registry for Lymphatic Diseases. This project will be completed through an affiliation with the Lymphatic Education & Research Network, a non-profit organization whose mission is to promote research and the development of new therapies for patients with lymphatic diseases, including lymphedema. The registry will provide researchers with much-needed clinical data to study the impact of diseases of the lymphatic system, in order to develop improved treatments and find a cure for lymphatic diseases, lymphedema, and related disorders. The establishment of this initiative is a major step forward in research for direct study of groups of patients with lymphatic disease. In the future, this project will be able to be linked with a biorepository, in which tissue and blood samples derived from patients will be made available for research into human disease states. An international patient registry and tissue/cell bank program paves the way for future clinical trials of experimental drugs and therapies designed to treat lymphatic disease in human subjects.
Interventions
None listed
Sponsors
Lymphatic Education & Research Network
Stanford University
Study design
Observational model
CASE_ONLY
Time perspective
OTHER
Eligibility
Sex/Gender
ALL
Healthy volunteers
No
Inclusion criteria
* Presence of lymphatic disease
Exclusion criteria
* None
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| prevalence of lymphatic disease | 15 years |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| socioeconomic impact of lymphatic disease | 15 years | The data in the registry will be utilized to determine the financial impact of requisite diagnostic and treatment interventions and will be analyzed to consider the relative contribution of third-party payer participation in the cost of care. The financial impact of disease and treatment will be addressed through the financial data entered by registry participants. |
Countries
United States
Contacts
Primary ContactStanley Rockson, MD
Outcome results
None listed