By Kathy Doherty
Did the COVID-19 pandemic pique your interest in scientific research? The effort in scientific communities to quickly develop, test, and deploy safe and effective vaccines brought attention to the role of clinical trials in bringing new diagnostics and treatments to market. Though there have been few Lipedema-specific trials to date, we are encouraged about their potential. And we are excited to announce a new tool to help patients find Lipedema trials that are recruiting participants.
Clinical research studies, including clinical trials, are a crucial part of scientific research and help to advance medical knowledge and improve patient care – such as developing a vaccine, testing a medical device like a pacemaker, or finding a cure for cancer.
The COVID-19 vaccines are just one example of the many medical breakthroughs that clinical trials have fueled over the last 100 years. From insulin pumps to treat diabetes to new chemotherapy protocols for cancer, researchers continually look for scientific advances to improve and prolong the quality of life for patients.
Patient participants play the most important role in a clinical trial – they are the reason for the study and their participation is critical. Unfortunately, patient recruitment is often challenging – especially for a condition like Lipedema that, until recently, has received very little attention from the medical and research communities. And while it’s fairly common among women, the condition is underdiagnosed and untreated for many.
In the past few years, however, there has been a renaissance in Lipedema research, thanks to growing awareness of the condition and through the efforts of groups like the Lipedema Foundation, which actively sponsors research. Even though Lipedema research is still in the early stages, there is a need to identify patients who are willing to participate in clinical studies, as well as people without Lipedema who can participate in control groups.
As the world’s largest sponsor of Lipedema research, the Lipedema Foundation funds a variety of projects to help find ways to diagnose and develop treatments for Lipedema. Some of these are clinical studies and call for volunteers – like you and your family and friends – to turn ideas into advancements in Lipedema research.
Clinical Study Basics
A clinical study recruits and works with patient volunteers to add to medical knowledge. There are two main types of clinical studies: Clinical trials (also called interventional studies) and observational studies.
In a clinical trial, a team of researchers and doctors administers a new medical treatment, drug, device, or method to a group of human volunteers to test how well it works. The purpose is to find a new or improved way to treat, prevent, or diagnose different types of illnesses. A clinical trial can also determine whether experimental treatments or new ways of using known therapies are safe and effective under a controlled environment.
In an observational study, researchers assess health outcomes in groups of participants according to a research plan or protocol. The researchers usually are not subjecting participants to experimental treatments – they are observing patients on their current treatment plan while making measurements of specific features or outcomes for the condition. For example, researchers may observe a group of people to learn more about the effect that different diets may have on their weight.
The length of a clinical trial varies, depending on what is being studied. Participants are usually told how long a trial will be when they enroll. Clinical trials help researchers and doctors discover:
Is the treatment safe and effective?
How well does the treatment work?
Is the treatment potentially better than the treatments we have now?
What are the side effects and risks of the treatment?
Clinical studies are typically led by a head researcher called a principal investigator, who is assisted by a team that may include doctors, research scientists, nurses, dietitians, and other healthcare professionals. They are conducted in a variety of settings, including hospitals and academic research institutions. Clinical studies can be funded by non-profit organizations like the Lipedema Foundation, but most are supported by government agencies; pharmaceutical, biotechnology, or medical device companies; and healthcare institutions.
Getting Involved
There are many reasons to join a clinical study, but for whatever reason you choose, remember that by participating, you become a partner in scientific discovery! People become involved in clinical trials for a variety of reasons, including to:
Take a more active role in their healthcare
Gain access to new treatments not available to the public
Help others by contributing to medical research
Offer hope to people with serious health conditions as well as to researchers working hard to find a treatment or a cure
Enable future generations to lead healthier lives
Anyone can volunteer to be in a clinical trial, though studies recruit participants with appropriate health problems and medical histories – so a person may have the condition, but not necessarily qualify for a particular study. But there are several ways that Lipedema patients can find a clinical trial that they might qualify for.
First, check out LEGWORK, the Lipedema Foundation’s new clinical trial finder. While Lipedema may be in its infancy as a research field, we are excited to drive its growth and proud to launch a service to better help patients and researchers connect. Although there are not many studies actively recruiting yet, new studies will be added as they become available, so bookmark the page and keep checking back.
Other ways to get involved in research: Sign up for the LF Registry, and subscribe to our e-newsletter (be sure to check that you’re interested in participating in research on the subscription form). We will contact patients near where studies are taking place to make them aware of when recruitment starts.
You can also talk to your doctor or healthcare providers to see if they are aware of a study or check out support groups that focus on a particular condition – like Lipedema – as sometimes they will have lists of clinical studies.
Make a difference by engaging in a clinical study!
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.