Today, I’m going to talk about the International Lymphatic Disease and Lymphedema Patient Registry & Biorepository. It is a crucial vehicle for research and increasing awareness about lymphedema and lipedema. The information I’ll cover in this post has been taken directly from the Lymphatic Education & Research Network (LE&RN) website.
What is the Registry?
The registry is a confidential database that has information about people who are diagnosed with a lymphatic disease, such as lipedema, as well as a repository for blood and tissue samples. All of this data and tissue samples can then be used by researchers. The goal is to greatly enhance the future ability of health care professionals to accurately identify, categorize, treat, and prevent lymphatic diseases, including lipedema. The Registry operates under the guidance and direction of the LE&RN Board of Directors and the Institutional Review Board of Stanford University. Many of you know about clinician and researcher Dr. Stanley Rockson. He is part of both of these organizations and is promoting the initiative to build this Registry.
Why You Should Join
All people with a lymphatic disorder are strongly encouraged to participate in this project! It is especially important for women who have lipedema to participate, as we desperately need to increase the body of knowledge about this condition. Many of you have contacted the Lipedema Project asking about how you can participate in lipedema research – here is one way to do that.
Although it is a lengthy process and can be time-consuming, you will find your participation to be very gratifying! You will be able to save the form as you go, and you can return to finish later. You will also be able to print out your contribution for your own records. This is one place where you will be assured that everything you have to share will be heard and valued. You will be helping other women around the world who have lipedema.
How You Can Join
The process will involve you reading and signing several consent forms that talk about how your privacy and all of your information will be protected. This is the kind of information they are looking for:
- A description of your medical history
- What your experience has been with lipedema
- Lab tests, blood or tissue samples, or other imaging that has been done (but don’t worry if you don’t have any of this)
Your information, your story, is so important to our body of knowledge. Whatever you are able to contribute to this project will be protected and valued.
For more information and to participate, go to the link for the Registry on the LE&RN website that is provided here, or simply type in a search for “patient registry for lymphatic disorders.” If you need assistance, contact us here at the Lipedema Project. We are doing tutorials called “Registry Together.”
Listen to our mini-podcast at https://lipedema-simplified.org/flash_briefings/episode-52/