There has been research done on Lichen Sclerosus, but not as much as we’d hope (or what we may want), and high quality prospective studies are needed to fill in the gaps.
By high quality prospective studies I am talking about the fact that there are different levels when it comes to research, and unfortunately the ones done on Lichen Sclerosus aren’t all of an “A” level. For instance, looking at the table provided in the picture you can look at the evidence rating of some the studies done, and then an explanation at the bottom. This is something to keep in mind as you (if you’re a nerd like me) do your own research.
Much of the information I share with you are reviews of different studies that may or may not have come to the same conclusion.
Why is there a gap in current research?
For example – regimens for maintenance treatment are difficult to research because of the challenges of conducting a long-term follow-up study. The research is very vague where there is no consensus on what a long-term control involves. A guideline stated in its introduction that “treatment remains unsatisfactory particularly in women as disabling scar formation is common despite treatment”.
The weakness of most published studies is that they observe patients for the first 3- months only. Long-term observational studies of adequate numbers of treated patients are few. However, for many publications the longest period of observation documented is 3 years.
Andrew Lee and Gayle Fischer in 2016 could find three exceptions: a descriptive cohort study fro the UK, with a mean length of follow-up for 66 months, a long-term study from France that was conducted prospectively over 10 years and a study from Australia conducted prospectively over 8 years.
One thing to also have in mind is that many of the studies are done on a small sample size, meaning that there isn’t many participants.
I hope this helps you to understand a little bit more about your condition and research!