About National Breast Cancer Lymphedema Registry
The National Breast Cancer Lymphedema Registry is an important research effort of Stanford University. The registry is housed at Stanford University under the direct supervision of Dr. Stanley G, Rockson, the Allan and Tina Neill Professor of Lymphatic Research and Medicine.
This registry is a confidential database that contains information about individuals who might be at risk of developing lymphedema (arm swelling) because of prior surgical lymph node removal and/or radiation therapy. Doctors are still trying to improve the diagnosis, treatment and possible prevention of lymphedema. You can help by joining in a research study that will address these questions.
What is a registry and what are its goals?
A registry is a well-organized collection of information, gathered from patients and physicians, about a specific medical condition, its treatment and the outcomes of treatment. By collecting information from lots of patients, researchers and physicians are able to better understand the disease, potential side effects, and the effect of various treatments.
How would I be involved?
If you would like to participate in this registry, you simply have to enroll within this website. You will have to give your consent to participate and to have your breast surgeon provide the Registry with clinical information about your breast cancer and its treatment. You will have to provide some personal information, but Stanford will ensure that it will be protected and secure.
Once you enroll, it will be important that you report to your physician and to the Registry any symptoms of possible lymphedema, such as heaviness or fullness in your arm, swelling, or tight fitting jewelry. Your surgeon will teach you about early signs that you may be developing lymphedema.
What is the commitment of my time and effort to participate?
Periodically after your breast cancer treatment has begun, you will be asked to return to this site to update information about any symptoms, test results or treatments, whether you develop lymphedema or not. It is as important to gather this information from the patients who don't develop lymphedema as it is from those who do.
You will be asked to log in about every three months. It should not take more than 15 minutes to enter this information each time you log into this secure website.