by Guy S Eakin, PhD
Our countdown of 2020 Lipedema research does not begin with a study. It’s more of a comment on studies, and one that requires a quick history lesson. This year marks the 80th anniversary of the original publication by Allen and Hines [1]. It’s a paper that reported a diagnostic criteria that has proven simple and lasting, with only modest updates three generations later.
That paper was perhaps too lasting, the next four decades averaged only a single publication per year, as recorded by the US National Library of Medicine.
In that time period, the world and medical practice certainly changed, but Lipedema continued. The black and white images of women’s bodies in that first paper remind us that while Lipedema patients have more therapeutic options today, they also still face many of the same issues that burdened the women in Allen and Hines’ studies.
Fast forward to 2010, when the Lipedema research community published a record twelve publications in a single year. Over the most recent decade, the pace of research accelerated significantly (Figure 1). At the time of writing, the US National Library of Medicine cites 46 publications related to Lipedema that were published in 2020 alone - a 35% increase above the record set in 2018 at 36, and 53% above 2019’s 30 publications. 2020 saw entry of 46 new papers covering many topics, from discovery sciences to new physical therapies and surgical approaches. This is good news as the Lipedema research field attracts talent and funding. This also suggests that Lipedema is on the way to building a sustainable network of researchers focused on conquering this poorly understood condition.
Figure 1.
What about quality? How certain are we of the data that are coming from these papers? Here, the story speaks to the limitations of a small field, and challenges of building a movement around Lipedema.
As exciting as it is to see historic numbers of papers, we have to acknowledge that 25 of the publications examined existing data, rather than conducting recruitment of new patients. These works typically presented as either reviews of prior literature or clinical histories (chart reviews).
Of the remaining articles that included new data, we looked at 17 publications that reported data from patients recruited for the purposes of that study. Only 7 of these studies reported the criteria used by the researchers to diagnose Lipedema. A different, if partially overlapping set of 7 papers reported the stages of Lipedema analyzed in the study.
This makes interpretation of the data difficult to compare between studies. Do we actually have Lipedema patients? What stage? Did they have other conditions? Did the women represent elderly or even pediatric cases? Were all the subjects and controls women? In many cases we don’t know.
Answering these questions will require several efforts. While we are truly excited at the interest journals are taking in Lipedema, they will need to raise their editorial standards to ensure these data are reported.
The other effort will be in improving the tools and methods available to physicians who make a Lipedema diagnosis. This year, researchers made significant progress developing these tools in well-characterized patients. This is the subject of next’s week’s blog entry in this series. We hope you’ll join us then for a conversation about how physics, chemistry, and biology are playing roles in the effort to diagnose Lipedema.
[1] Allen, E. and Hines, E. (1940) , Lipedema of the legs: a syndrome characterized by fat legs and orthostatic edema. , in Proc Staff Meet Mayo Clin, 15, pp. 184–187