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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:
Stanford University
Collaborator:
Feinstein Institute for Medical Research
Information provided by (Responsible Party):
Stanley Rockson, Stanford University
ClinicalTrials.gov Identifier:
NCT01336790
First received: April 7, 2011
Last updated: October 13, 2016
Last verified: October 2016
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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: | The International Lymphatic Disease and Lymphedema Patient Registry and Tissue Bank |
Resource links provided by NLM:
Further study details as provided by Stanley Rockson, Stanford University:
Primary Outcome Measures:
- prevalence of lymphatic disease [ Time Frame: 15 years ]
Secondary Outcome Measures:
- 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.
| 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| Ages Eligible for Study: | Child, Adult, Senior |
| 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.
Criteria
Inclusion Criteria:
- Presence of lymphatic disease
Exclusion Criteria:
Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study.
To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below.
For general information, see Learn About Clinical Studies.
Please refer to this study by its ClinicalTrials.gov identifier: NCT01336790
Please refer to this study by its ClinicalTrials.gov identifier: NCT01336790
Contacts
| Contact: Leslie Roche, RN/BSN | (650) 454-7276 | lesroche@stanford.edu |
Locations
| 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 | |
Sponsors and Collaborators
Stanford University
Feinstein Institute for Medical Research
Investigators
| Principal Investigator: | Stanley G Rockson | Stanford University |
More Information
Additional Information:
| 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 ( Other Identifier: Stanford IRB ) |
| Study First Received: | April 7, 2011 |
| Last Updated: | October 13, 2016 |
| 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 Lymphedema Lymphangiomatosis |
Lymphangiectasia Protein-losing enteropathy Vascular Anomalies |
Additional relevant MeSH terms:
|
Lymphedema Lymphatic Diseases |
ClinicalTrials.gov processed this record on July 25, 2017