Lipedema Foundation Registry
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.
See Also
Copy of LFR Informed Consent …………………… Copy of: Explanation of potential benefits and risks of joining the LFR
Frequently Asked Questions ………………………… Frequently Asked Questions related to LFR
Sign Up Instructions ……………………………………… Step-by-step instructions of creating an account through submitting surveys
LFR Flier ………………………………………………………. Informational hand-out for printing and distribution
Video “How to Signup” ………………………………… Step-by-step video of creating an account, signing in, submitting completed surveys
Video “Introduction to LFR” …………………………. Introductory video
Video “Frontiers of Lipedema Research“……... Erik’s full presentation at FDRS 2019
Staging ………………………………………………………… Page describing staging for the purposes of Initial Survey
Measurements Image PDF ………………………… Image depicting body measurement areas
REDCap Cloud’s Terms of Use ……………………… REDCap Cloud’s Terms of Use
REDCap Cloud’s Privacy Policy ……………………… REDCap Cloud’s Privacy Policy
REDCap Cloud’s Website ………………………………. REDCap Cloud’s Website
“You have the power to make a difference.
No one should have to face Lipedema on their own. By joining the registry you will become part of a global community working to improve outcomes and quality of life for Lipedema patients. The data you share will be anonymously and securely combined with others, enabling powerful analysis and discovery. Participation is simple, and enables you to contribute to real scientific research from the comfort of your own home.”
LFR products, including associated webpages and questionnaire are copyright © 2019 - 2022
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