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International Lymphatic Disease and Lymphedema Registry

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ClinicalTrials.gov Identifier: NCT01336790
Recruitment Status : Recruiting
First Posted : April 18, 2011
Last Update Posted : August 5, 2022
Lymphatic Education & Research Network
Information provided by (Responsible Party):
Stanley Rockson, Stanford University

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.

Condition or disease

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.

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Study Type : Observational
Estimated Enrollment : 5000 participants
Observational Model: Case-Only
Time Perspective: Other
Official Title: The International Lymphatic Disease and Lymphedema Patient Registry and Biorepository
Study Start Date : March 2009
Estimated Primary Completion Date : December 2024
Estimated Study Completion Date : December 2025

Primary Outcome Measures :
  1. prevalence of lymphatic disease [ Time Frame: 15 years ]

Secondary Outcome Measures :
  1. 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.

Information from the National Library of Medicine

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Ages Eligible for Study:   Child, Adult, Older Adult
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Participants (national and international participants) with the presence of lymphatic disease.

Inclusion Criteria:

  • Presence of lymphatic disease

Exclusion Criteria:

  • None

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT01336790

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Contact: Leslie Roche, RN/BSN (650) 7231396 lesroche@stanford.edu

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United States, California
Stanford University School of Medicine Recruiting
Stanford, California, United States, 94305
Contact: Principal Investigator         
Principal Investigator: Stanley G Rockson         
Sponsors and Collaborators
Stanford University
Lymphatic Education & Research Network
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Principal Investigator: Stanley G Rockson Stanford University
Additional Information:
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Responsible Party: Stanley Rockson, Allan and Tina Neill Professor of Lymphatic Research and Medicine, Stanford University
ClinicalTrials.gov Identifier: NCT01336790    
Other Study ID Numbers: SU-04052011-7662
16384 ( Other Identifier: Stanford IRB )
First Posted: April 18, 2011    Key Record Dates
Last Update Posted: August 5, 2022
Last Verified: August 2022
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: Undecided
Plan Description: grouped data may be shared
Keywords provided by Stanley Rockson, Stanford University:
Lymphatic disease
Protein-losing enteropathy
Vascular Anomalies
Additional relevant MeSH terms:
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Lymphatic Diseases