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International Lymphatic Disease and Lymphedema Registry

This study is currently recruiting participants.
Verified October 2016 by Stanley Rockson, Stanford University
Sponsor:
ClinicalTrials.gov Identifier:
NCT01336790
First Posted: April 18, 2011
Last Update Posted: October 17, 2016
The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.
Collaborator:
Feinstein Institute for Medical Research
Information provided by (Responsible Party):
Stanley Rockson, Stanford University
April 7, 2011
April 18, 2011
October 17, 2016
March 2009
December 2024   (Final data collection date for primary outcome measure)
prevalence of lymphatic disease [ Time Frame: 15 years ]
Same as current
Complete list of historical versions of study NCT01336790 on ClinicalTrials.gov Archive Site
socioeconomic impact of lymphatic disease [ Time Frame: 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.
socioeconomic impact of lymphatic disease [ Time Frame: 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.
Not Provided
Not Provided
 
International Lymphatic Disease and Lymphedema Registry
The International Lymphatic Disease and Lymphedema Patient Registry and Tissue Bank
The purpose of the National Lymphatic Disease and Lymphedema Registry 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.
This project represents the inauguration of a National Patient Registry for Lymphatic Diseases. This project will be completed through an affiliation with the Lymphatic Research Foundation, 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 tissue bank, in which tissue and blood samples derived from patients will be made available for research into human disease states. A national 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.
Observational
Observational Model: Case-Only
Not Provided
Not Provided
Non-Probability Sample
Participants (national and international participants) with the presence of lymphatic disease.
Lymphedema
Not Provided
Not Provided
Not Provided

*   Includes publications given by the data provider as well as publications identified by ClinicalTrials.gov Identifier (NCT Number) in Medline.
 
Recruiting
5000
December 2025
December 2024   (Final data collection date for primary outcome measure)

Inclusion Criteria:

  • Presence of lymphatic disease

Exclusion Criteria:

Sexes Eligible for Study: All
Child, Adult, Senior
No
Contact: Leslie Roche, RN/BSN (650) 454-7276 lesroche@stanford.edu
United States
 
 
NCT01336790
SU-04052011-7662
16384 ( Other Identifier: Stanford IRB )
No
Not Provided
Plan to Share IPD: Undecided
Plan Description: grouped data may be shared
Stanley Rockson, Stanford University
Stanford University
Feinstein Institute for Medical Research
Principal Investigator: Stanley G Rockson Stanford University
Stanford University
October 2016