More Lipedema Research to Participate In

By June 22, 2023 July 7th, 2024 No Comments

Today I would like to tell you about some more opportunities to participate in lipedema research. 

Like before, these studies are what is called asynchronous, meaning that participants can start and end at all different times, as long as they have completed their participation by the time the study ends. Some of the studies are testing an intervention, and some are just collecting data. The link to each study will also be provided so you can find out more information.  

Here is a brief summary of several valuable lipedema research opportunities:

The Effects of Endurance Training in Women With Lipedema

This study is located at the Institute for Circulation and Medical Imaging at the Norwegian University of Science and Technology in Trondheim, Norway. The Principal Investigator is Øivind Rognmo, PhD. 

The purpose of this study is to determine the potential therapeutic effects of high-intensity interval training (HIIT) on pain, quality of life, body composition, cardio fitness, and blood biomarkers in women with lipedema. 

They hope to recruit 30 participants for the study which is ending on December 31, 2024. 

Participants in the intervention group will undergo eight (8) weeks of supervised high-intensity interval training (HIIT) as well as perform exercises on their own once a week for the duration of the study. On the other hand, the control group will carry on with normal activities. 

The participants will fill out several self-report surveys on pain, health status, and quality of life. They will also undergo blood draws and various measures of weight, body composition, and metabolism. 

Requirements to participate in this study include: 18 to 65 years of age, female, diagnosed with lipedema, and able to meet for supervised exercise training in Trondheim, Norway. 

Some of the things that would exclude you from participation would be eating disorders and/or orthopedic limitations for exercise training. 

Click here to find more information about this study.

Surgical Treatment of Lipedema in Norway – a National Multicenter Study

This study takes place in several hospital centers in Norway as a national multi-center study to compare and document liposuction and various treatment regimes for lipedema over a period of 5 years.  The Principal Investigator is Hildur Skuladottir, PhD. 

They hope to recruit 220 participants for the study, which is ending on December 31, 2025. 

Eligible patients are randomized to two different conservative treatment protocols (either standard conservative treatment or standard treatment plus pneumatic pump). After six (6) months, the effects of the conservative treatment are evaluated. Patients who still want surgery and fulfill the inclusion criteria are randomized to either early or late liposuction surgery. Randomization to the surgical group is stratified by a conservative treatment arm. 

Conservative Therapy Group
Physical therapy, including compression garment and exercise program
Self-care program
Individual counseling from a clinical dietician

Conservative Therapy + Pump Group
All of the above + pump

Early Liposuction Group
Has liposuction within 6-9 months after inclusion in the study

Late Liposuction Group
Has liposuction 18-21 months after inclusion in the study

In order to participate in the study, one has to be female, 20-65 years old, have significant pain from lipedema, and considered to be in lipedema stage 1-2 or localized stage 3. 

Issues that would exclude someone from this study are: not fluent in Norwegian language, pregnancy, a current malignancy, previous surgical treatment for lipedema, smoking, a BMI greater than 28, serious comorbidities such as heart, lung, or kidney disease, and not willing to wear compression garments. 

Click here to learn more about this study. 

Vascular Lab Resource (VLR) Biorepository Study

This study is located at the Cleveland Clinic in Cleveland, Ohio, USA. The Principal Investigator is Scott Cameron, MD, PhD, The Cleveland Clinic. 

Its purpose is to study biomarkers obtained from prospectively collected subject samples and their correlation with cardiovascular and metabolic diseases. This study also aims to develop an enduring tool to allow for collaborative research between clinicians at Cleveland Clinic Main Campus and basic scientists at the Lerner Research Institute. This collaboration will allow resources to be available to clinical and basic researchers alike. They also want to collect blood, urine, and/or stool samples and clinical data from subjects for a biorepository. Samples with DNA will be collected for genetic testing as well. 

This is an observational study, meaning that there is no intervention. The researchers are looking for associations between different lab values and various conditions. They hope to recruit 500 participants for the study which is ending on December 31, 2030. 

Some of the conditions they will be looking at in addition to lipedema and lymphedema will include (many more were listed):

  • Cardiovascular Diseases
  • Metabolic Disease
  • Peripheral Artery Disease
  • Venous Disease
  • Thrombosis
  • May-Thurner Syndrome
  • Thoracic Outlet Syndrome 

If you wish to participate in this study, you should be at least 18 years old. Both men and women are eligible to participate and they are specifically looking for people that have been diagnosed with or at risk for cardiovascular and metabolic diseases. You are not eligible to participate in this study if you have a life expectancy of less than or equal to 6 months at the time of enrollment, are currently pregnant, and/or have severe anemia. 

If you are interested, you may click here to find more information about this study.

Visualizing Vascular Mechanisms of Lipedema

This study takes place at Vanderbilt University Medical Center in Nashville, Tennessee, USA, with Rachelle Crescenzi, PhD as the Principal Investigator. 

Knowing that lipedema is commonly misdiagnosed as simple obesity and that noninvasive lymphatic imaging strategies are underdeveloped, this study applies MRI tools together with standard clinical tools to test the following hypotheses:

Hypothesis 1A: Ultrasound can be used as an accessible alternative to MRI for measuring subcutaneous fat deposition to distinguish lipedema from obesity. 

Hypothesis 1B: Ultrasound measurement of fat deposition together with bedside tools for measuring water deposition has an improved ability over ultrasound alone for distinguishing lipedema from controls. 

Hypothesis 2: Tissue sodium is reduced following CDT in the lower extremities, but not in the untreated upper extremities of patients with lipedema consistent with improved patient-reported outcomes. 

Hypothesis 3: Lymphatic flow is reduced, while arterial blood flow is elevated, in the legs of patients with lipedema compared to controls. 

Although this is an observational study, meaning that there is no intervention, the participants will be measured and assessed prior to and after receiving complete decongestive therapy (CDT). The researchers are looking for associations found in participants with lipedema that can help with diagnosis and possibly guide treatment. They hope to recruit 110 participants for the study which is ending on January 1, 2027. 

Participant Groups:

Participants pre-CDT
Participants with lipedema
Biologically Female
Age range: 18 – 80 years
BMI range: 18 – 40 kg/m2

Participants without lipedema
Biologically Female
Age range: 18 – 80 years
BMI range: 18 – 40 kg/m2

Participants post-CDT
Participants with lipedema
Biologically Female
Age range: 18 – 80 years
BMI range: 18 – 40 kg/m2

Imaging with MRI and ultrasound will be used to assess tissue sodium and water content. Blood, urine, and DNA sampling will also be performed. 

Participants needed for this study are those with or without lipedema, biologically female, within 18 – 80 years old, and BMI range of 18 – 40 kg/m2.

Some of the things that would exclude someone from this study would be primary lymphedema, inability to undergo MRI testing, pregnancy, severe claustrophobia, inability to provide written informed consent, active infection anywhere in the body or open wound on the lower extremities or at locations used for measurement, inability to adhere to the experimental protocols, and cognitive limitations. 

Click here to know more about this study. 

Take Action!

These research studies are important because they help expand our knowledge about lipedema and how to treat it. You, or someone you know, may be able to help improve the lives of other women with lipedema.  

The growing literature on lipedema gives us hope that there will be more research about it to come in the future. 

~ Leslyn Keith, OTD, CLT-LANA
Board President, Director of Research | The Lipedema Project

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