Living with lipoedema can sometimes feel like being trapped in a medical no-man’s land. It’s a condition so often overlooked for adequate treatment options, yet too real to ignore as it reshapes our bodies and our lives. The frustration of limited care options leaves many of us feeling like passive passengers on this journey, rather than active participants in our own healing. The feeling of having no control over our own body is a hurdle that most of us are challenged with at some point in our journey.
Clinical Trials As A Way To Reclaim Control
Participating in a clinical trial potentially offers a way to reclaim a little of that control – instead of waiting for medical science to catch up, you can help drive it forward. It offers a way to contribute vital data that could unlock better treatments not just for ourselves, but for every woman struggling with the disproportionate pain and swelling that defines our condition.
There’s a number of direct benefits of participating in clinical trials:
- Access to specialists who have deeper expertise in lipoedema than most doctors
- Opportunity to expand your treatment options with potential new treatments and interventions before they’re widely available
- Having your condition closely assessed and monitored – likely more so than you would outside of a trial
- Connection with other lipoedema warriors
Weigh Up Both Sides
As with anything, there are pros and cons – participating in a trial isn’t for everyone. Participation means commitment—sometimes frequent appointments, travel, and uncertain outcomes. Some studies use placebos and breakthrough moments aren’t guaranteed and there are often tight eligibility criteria to meet.
Establish Your Own Criteria
It’s also important, I believe, to establish your personal ‘criteria’ for the types of studies you’d like to be involved in. For example, my own criteria is that I’ll only consider participation in trials / research that has a direct benefit to me (e.g. access to potential new treatment). Why? In Australia, women seeking lipoedema treatment are excluded from the financial support offered by our ‘free universal healthcare system’, which we’ve spent our working lives contributing to. And we’re excluded from accessing insurance coverage for lipoedema treatment, even though many of us have paid premiums our whole working lives. We have to pay privately for lipoedema treatment. So while the health system continues to exclude me financially, I won’t contribute my data for free. The organisations / researchers / doctors that use our data and tissue will benefit from career advancement, accolades and being published in a journal, access to more funding, advancement of their career and salary, and an increase in paying patients. I feel strongly that there also needs to be something in it for the women who are contributing their valuable data, tissue and DNA. This is just my personal criteria – yours might look different.
Where to Find a Lipoedema Clinical Trial?
1. Australian-Specific Resources
Finding a lipoedema clinical trial in Australia is a bit of a challenge, but these resources will point you in the right direction by connecting you with some of the key organisations conducting lipoedema research:
Lipoedema Australia: This organization actively supports lipoedema research and may have leads on local studies.
Lymphoedema Clinical Research Unit at Flinders Medical Centre in South Australia conducts research on both lymphoedema and lipoedema – contact details here.
MQ Health at Macquarie University in Sydney conduct lipoedema studies.
Your Healthcare Provider: Specialists in vascular medicine, lymphatic disorders, or endocrinology may have information on local trials or be able to refer you to researchers working on lipoedema.
2. Local and Global Clinical Trial Databases
These databases list active clinical trials around the world:
ClinTrial Refer: A unique website that provides access to a network of clinicians, patients and others looking for clinical trials and those seeking to recruit participants (Australia).
ClinicalTrials.gov: A comprehensive global database where you can search for “lipoedema” and filter by location.
LEGWORK Clinical Trial Finder: A tool run by the Lipedema Foundation, primarily focused on U.S. studies but useful for tracking global research efforts.
MediFind: Offers a search tool to locate currently recruiting lipoedema studies.
3. Notable Ongoing Studies
If you’re looking for something you can participate in straight away and you’re located in USA or Europe, these trials might be interesting to you:
Lipoedema Foundation
Objective: Build a lipoedema BioBank to ‘collect, store, and share biological samples and data to support scientific research, and they are a foundational tool to advance medical discoveries. These biological samples will support research into the causes, progression, and potential treatments for Lipedema’.
Eligibility: Females with or without lipoedema.
Study Details: ‘Collection of blood and urine samples, an exam for research purposes, and a survey’.
When? 20th-22nd of March in Atlanta, full details here.
Pennington Biomedical Research Center Study (U.S.)
Objective: Understand the distribution and function of fat tissue in lipoedema.
Eligibility: Pre-menopausal females aged 18-45 with a BMI ≤ 70 and a clinical diagnosis of lipoedema.
Study Details: MRI scans, DXA scans, and 3D imaging over three months.
Compensation: Up to $475
Learn more
LIPLEG Clinical Trial (Europe)
Objective: Assess the safety and effectiveness of liposuction for treating lipoedema.
Study Type: Randomized controlled multicenter trial.
Learn more
National Lipedema Study (Norway)
Objective: Evaluate the effects of surgical treatment for lipoedema.
Recruitment: Ongoing at multiple centers.
Learn more
Vanderbilt Lipedema Research Study (U.S.)
Objective: Investigate sodium accumulation in lipoedema tissue to develop a diagnostic test.
Conducted By: Vanderbilt University Medical Center in partnership with the Lipedema Foundation.
Learn more
Key Considerations Before Joining a Clinical Trial
Before enrolling in a study, make sure you discuss it with your doctor and consider these important factors:
- Eligibility criteria
Each trial has specific requirements such as age, diagnosis stage or prior treatments. - Location
Some studies require in-person visits, while others allow remote participation. - Potential risks and benefits
Make sure you understand what the trial involves, including possible side effects. - Your comfort level
Some studies require medical tests or lifestyle changes that may impact your daily routine.
Taking An Active Role
If you’ve ever felt like lipoedema research is moving too slowly, participating in a clinical trial could be a way to feel like (and be) part of solution. There’s no doubt that every women who joins a study is helpign to build the evidence needed to improve time-to-diagnosis, treatment, and awareness of lipoedema. It’s not just about finding answers – it’s about taking an active role in shaping the future of lipoedema care.
That being said, it’s also important to weigh up the pros and cons for your unique situation, discuss it with your doctor, and establish your own personal criteria to define the kinds of clinical trials you’ll be happy to participate in. While the process of finding a trial can be daunting, resources are available to help. Stay curious, ask questions, and don’t hesitate to reach out to researchers and support organisations for guidance.
Looking for existing research? Visit the Navigate Lipoedema Research Library for a comprehensive collection of research on nutrition and supplements, pathophysiology, lipoedema surgery and more.
