The International Lymphatic Disease and Lymphedema Patient Registry & Biorepository
What is the patient registry and what are its goals?
The International Lymphatic Disease and Lymphedema Patient Registry & Biorepository is a confidential database that contains information about individuals with lymphatic disease, including lymphedema and lipedema. This comprehensive registry will provide data for lymphatic researchers to identify and categorize lymphatic diseases, to evaluate treatments, and to design clinical trials to prevent and treat these diseases. The tissue biorepository is a tissue bank for medical research purposes.
The International Lymphatic Disease and Lymphedema Patient Registry & Biorepository is sponsored by the Lymphatic Education & Research Network Board of Directors. Oversight is provided by Institutional Review Board of Stanford University.
How will participating in this registry help me and others in the lymphatic disease community?
Lymphatic diseases can affect virtually every organ in the body. Lymphatic diseases include, but are not limited to, primary and secondary lymphedemas, lipedema, lymphangiomas, cystic hygromas, lymphangiectasias, lymphangiomatosis, and mixed lymphatic and vascular abnormalities.
By sharing your information, you are providing researchers with invaluable data that may lead to new discoveries and treatments, which may improve the lives of patients with lymphatic disease. We hope that with time, we will obtain thousands of records that can be made available to researchers. If you are someone with a lymphatic disease or caring for someone with lymphatic disease, this is your opportunity to collaborate with researchers, to contribute to and advance research.
How would I be involved?
To participate in this registry, you simply enroll within this website. After providing your consent to participate, there are baseline survey forms to complete, which can be done at your own pace. Information about your diagnosis, medical history, treatments, quality of life, and demographics are collected. Completing the forms may be time-consuming but your information is vital to researchers, providing much-needed information on lymphatic diseases and their impact on patients and their families.
Your information will be de-identified, complying with the Health Insurance Portability and Accountability ACT (HIPAA) Privacy Rule, and stored in a secure Stanford web-based database.
Google Cloud Project hosts this front page. Researchers requesting information from the registry will not receive any identifying information, including name, date of birth, and contact information.
What is the commitment of my time and effort to participate?
It will take approximately 90-120 minutes to complete the initial survey forms. Follow-up emails, sent every 6 months, will ask you to update your information, which will take approximately 30-45 minutes to complete.
If you are a returning member of the LE&RN Lymphatic Disease & Lymphedema Registry (enrolled prior to January 2016), please register as a new user. The data you previously provided to the registry will be added to your account.