Launch of the new voluntary Lipoedema Registry, in support of Lipoedema UK

1 Aug 2019

Lipedema Foundation Registry (LFR) is an online registry established to help our lipedema community, including affected individuals, families, clinicians, and researchers. Its goals are to: learn more about lipedema; understand barriers to diagnosis; better manage symptoms; assess quality of life impact; and develop new treatment approaches.

The Lipedema Foundation (LF) has developed an “Initial Survey” that should take approximately 60 minutes to complete. It will help provide direction for what types of research we should fund next. It will ask for basic health information (such as “Have you been diagnosed with lipedema by a physician?”) and for 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?”). You do not have to answer all questions.

The registry platform works best on computers or laptops. For added security, you may wish to access the Registry using the Google Chrome browser and registering with a Gmail address.

In the future, LF will develop additional surveys that will include more detailed questions around topics such as: Treatments, Family History, Path to Diagnosis, Symptoms, and Co-morbidities. Over time, the registry may grow to include integrations with clinical teams, research teams, biobanks and/or genetics repositories.

LFR is a program of the Lipedema Foundation (LF) and has been developed with the help of patients, consultants at RTI, clinicians, researchers, lawyers, and people who work at the platform’s company, REDCap Cloud. We especially want to thank people and teams whose surveys came before ours: LipoedemaUK, Dr Karen Herbst, Tilly Smidt, Vanderbilt UMC, Joanna Dudek, and others.