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International Lymphatic Disease and Lymphedema Registry

NCT ID: NCT01336790

Last Updated: 2023-11-22

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

5000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2009-03-31

Study Completion Date

2025-12-31

Brief Summary

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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

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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.

Conditions

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Lymphedema

Study Design

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Observational Model Type

CASE_ONLY

Study Time Perspective

OTHER

Eligibility Criteria

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Inclusion Criteria

* Presence of lymphatic disease

Exclusion Criteria

* None
Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Lymphatic Education & Research Network

UNKNOWN

Sponsor Role collaborator

Stanford University

OTHER

Sponsor Role lead

Responsible Party

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Stanley Rockson

Allan and Tina Neill Professor of Lymphatic Research and Medicine

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Stanley G Rockson

Role: PRINCIPAL_INVESTIGATOR

Stanford University

Locations

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Stanford University School of Medicine

Stanford, California, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Stanley Rockson, MD

Role: CONTACT

(650) 7231396

Facility Contacts

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Principal Investigator

Role: primary

Related Links

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https://lernregistry.stanford.edu/

The International Lymphatic Disease Patient 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 lymphatic disease.

Other Identifiers

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16384

Identifier Type: OTHER

Identifier Source: secondary_id

SU-04052011-7662

Identifier Type: -

Identifier Source: org_study_id