Lipedema Research Studies: How to Participate and a New Paper

Listening to all the latest research on lipedema at the FDRS conference last month got me wondering how I can contribute to lipedema research as a patient. In this post I’ll share several lipedema clinical studies that are currently enrolling in the United States as well as a virtual opportunity open to anyone reading. I’ll also share an exciting new report that provides insight into the challenges women face receiving a lipedema diagnosis, treatments they have tried and whether they helped, and possible links with lipedema and family history. Watch or read more below.

Remember, I’m just a lipedema patient like you. Please consult your care team for advice on whether or not any of these opportunities are suitable for you. I have no affiliation with any of them.

Lipedema Research Studies Currently Enrolling

  1. Vanderbilt Lipedema Research with MRIs. Complete a short survey here to see if you are eligible and read more about their hypotheses here. Located in Nashville, Tennessee.
  2. Louisiana State University in Baton Rouge, Louisiana. Studies details and contact information here.
  3. Washington University in St. Louis, Missouri. This one is looking at weight loss and nutritional interventions. You can learn more and contact them here.
  4. Looking for something? The Lipedema Foundation maintains a list of worldwide clinical trials that you can search at anytime on their Legwork database. Love that name!

Virtual Opportunity to Participate in Lipedema Research

You can still contribute even if none of the currently enrolling lipedema studies are close to you or you are short on time. The Lipedema Foundation Patient Registry is open to anyone with an internet connection and the lipedema questionnaire takes 30-60 minutes to complete. (Mine took 45 minutes.) It will ask you about your symptoms, the treatments you’ve tried and if they helped, any family history, and more. If you want, you can upload photos, but that’s optional. You will also have an opportunity to choose whether to share your identifiable or unidentifiable data with other organizations, including researchers enrolling for studies. Notice a question or response option missing? You can also tell them that (like I did!) here.

The Registry was launched in 2019 and in 2022 they published preliminary findings based on the first 521 completed surveys. Learning by Listening: Early Findings from the Lipedema Patient Registry survey is a short, accessible, and fascinating read. Even if you choose not to participate in the Registry, I highly recommend you read the report. One of the findings that takes my breath away is that even though most women report first noticing symptoms as a teenager, on average it is 17 years before they seek medical help and an additional 10 years of seeking help to get a diagnosis. We deserve better than that! Sharing your information in the Patient Registry is one way to help researchers shorten that timeline for future generations.

One other finding that caught my attention is that 6-7% of respondents reported having a male family member with lipedema-like symptoms. When I was diagnosed, my doctor asked who in my family I looked like. When I responded that I looked like my younger brother, she shook her head and told me to think harder. It was true, though. He always had swelling and weight problems like me. Unfortunately, he passed away as a teenager so I can’t ask him any questions but reporting things like this might help give researchers clues about how lipedema passes through families and whether men are, in fact, also affected by lipedema. (The report notes 10 case studies of men being diagnosed with lipedema!)

Joining the Registry is an opportunity to share your unique journey with lipedema. Not surprisingly, the current sample of patients is heavily skewed toward white women in the United States but it is critical to capture the true diversity of backgrounds and experiences impacted by this disease.

If you are aware of other new lipedema research studies or opportunities to participate, please share links in the comments below so we can learn from each other.

Author: Rebekah

Vibrant, creative, thirty-something living life to the fullest with chronic disease.

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