Lipedema Foundation LEGWORK
Clinical Study Finder - Engaging in Research. Partnering for Progress.
Become a part of discovery
Congratulations! You decided to explore how you can work with researchers to get the best care for you and other people too! This is the first step in becoming part of a very small group of people we call heroes. We know finding and understanding research studies can be difficult. So we are pleased to offer the Lipedema Foundation LEGWORK service to make finding those studies easier.
Finding a Study in the US or Around the WOrld
LEGWORK is designed to help people with Lipedema and related conditions find studies to support their own care and advance the care of others. Use LEGWORK to:
Access simple search filters that quickly search several clinical research databases.
Click through the results to learn more about each study.
Discuss specific candidate studies with your healthcare provider by sharing the study URL with your care team.
Get in direct contact with the study’s coordinator.
+ Understanding the Clinical Research Process
What goes into being in a clinical study? What questions should you ask? How will the study work with your regular care? The award winning non-profit Center for Information and Study on Clinical. Research Participation (CISCRP) has some outstanding information that covers these questions and more.
+ Are we missing a study?
Have you heard of a study that isn’t here?
- The most likely reason is that the study is not listed in the clinical research databases that LEGWORK accesses. We recommend studies register with clinicaltrials.gov in order to be included in LEGWORK. Once registered, it usually takes 24 hours for the study to appear here. All Lipedema Foundation supported studies are required to register in this database.
- In some cases, a study may be registered but may no longer be accepting new participants. When its status changes, it is automatically removed from our database.
- Similarly, if a study does not use the term 'Lipedema' or 'Lipoedema' it may not be reported in LEGWORK. This may occur if a study only uses an older or uncommon synonym for Lipedema. This can also occur if a study focuses on a symptom of lipedema (eg, nodules) without mentioning lipedema explicitly
- In rare cases, the Lipedema Foundation reserves the right to remove studies that we believe may not be in the best interest of our community. The reasons may not just be safety. Studies that charge patients for participation, or that may have other ethical issues may be removed as part of our obligations to our patient community.
+ Other ways to find out about active studies around the world
- Registrants in the Lipedema Foundation Registry and subscribers to our newsletter and social media periodically receive notices of launch or progress on various research studies.
- Although LEGWORK derives its data from the the main international database used by pharmaceutical and device manufactures, other databases exist throughout the world and may report availability of Lipedema studies. Databases known by the Lipedema Foundation to have currently or previously reported Lipedema studies include:
- A list of other clinical trial registries can be found through the World Health Organization or even on Wikipedia.
+ Other Questions?
- The Lipedema Foundation can be reached at info@lipedema.org
+ Share your experience!
- The world needs more heroes like you. Consider sharing your experiences with clinical research on your social media platforms or in the comments of ours! If you don’t want to share your own experience, help people know what opportunities exist by sharing the LEGWORK site.
The content provided in the Lipedema Foundation Legwork program is for informational purposes and does not, under any circumstance, constitute medical advice. Consult with your healthcare provider regarding any changes to your lipedema treatment including participation in any study. Information provided here is maintained by the TrialScope vendor and supplied by the individual study teams. Use of the TrialScope service requires acceptance of the TrialScope privacy policy and terms of service. Some features of the service may require registration of the user's contact information with TrialScope through the TrialScope website. Do not register if you do not consent to providing such information. The Lipedema Foundation does not guarantee that the contents are accurate or complete, or that any given study will be available for participation or applicable to your condition. The listing of a study on the site does not constitute an endorsement or recommendation of that study by the Lipedema Foundation. As such, you hereby waive claims and liability against the Lipedema Foundation for any harm, including bodily injury and death, that may result in connection with the use of this service. The Lipedema Foundation reserves the right, at its discretion, to omit studies or add studies to the service without notice. The Lipedema Foundation does not represent that the list of studies presented through the service is complete.