The Lipedema Foundation Registry (LFR) is an online registry established to help the Lipoedema community, including affected individuals, families, clinicians and researchers. Its goals are to learn more about Lipoedema; understand barriers to diagnosis; better manage symptoms; assess quality of life impact; and develop new treatment approaches.
The LFR has developed an ‘Initial Survey’ that should take approximately 60 minutes to complete. It will help provide direction for what types of research should be funded next. It will ask for basic health information as well as specific information related to current research (such as ‘Are you allergic to iodine?’). The ‘Initial Survey’ also requests information that may involve more work than just answering questions (such as ‘What is your hip circumference?’), but you do not have to answer all questions.
