National Lymphatic Disease and Lymphedema Registry
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Purpose
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.
| Condition |
|---|
|
Lymphedema |
| Study Type: | Observational |
| Study Design: | Observational Model: Case-Only |
| Official Title: | National Lymphatic Disease and Lymphedema Registry |
- prevalence of lymphatic disease [ Time Frame: 15 years ] [ Designated as safety issue: No ]
- socioeconomic impact of lymphatic disease [ Time Frame: 15 years ] [ Designated as safety issue: No ]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.
| Estimated Enrollment: | 5000 |
| Study Start Date: | March 2009 |
| Estimated Study Completion Date: | December 2025 |
| Estimated Primary Completion Date: | December 2024 (Final data collection date for primary outcome measure) |
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.
Eligibility| Genders Eligible for Study: | Both |
| Accepts Healthy Volunteers: | No |
| Sampling Method: | Non-Probability Sample |
Participants (national and international participants) with the presence of lymphatic disease.
Inclusion Criteria:
- Presence of lymphatic disease
Exclusion Criteria:
- None
Contacts and LocationsPlease refer to this study by its ClinicalTrials.gov identifier: NCT01336790
| Contact: Leslie Roche, RN/BSN | (650) 454-7276 | lesroche@stanford.edu |
| United States, California | |
| Stanford University School of Medicine | Recruiting |
| Stanford, California, United States, 94305 | |
| Contact: Leslie Roche, RN/BSN 650-454-7276 lesroche@stanford.edu | |
| Principal Investigator: Stanley G Rockson | |
| Principal Investigator: | Stanley G Rockson | Stanford University |
More Information
Additional Information:
No publications provided
| Responsible Party: | Stanley Rockson, Allan and Tina Neill Professor of Lymphatic Research and Medicine, Stanford University |
| ClinicalTrials.gov Identifier: | NCT01336790 History of Changes |
| Other Study ID Numbers: | SU-04052011-7662, 16384 |
| Study First Received: | April 7, 2011 |
| Last Updated: | September 30, 2014 |
| Health Authority: | United States: Institutional Review Board |
Keywords provided by Stanford University:
|
Lymphatic disease Lymphedema Lymphangiomatosis |
Lymphangiectasia Protein-losing enteropathy Vascular Anomalies |
Additional relevant MeSH terms:
|
Lymphatic Diseases Lymphedema |
ClinicalTrials.gov processed this record on February 27, 2015