We’ve been running our Friday Facts feature about different aspects of vitiligo on our Facebook group and this is the latest post about research.
What research should I trust?
Whilst vitiligo doesn’t yet have a cure, there are certainly a number of studies taking place every year looking at different aspects of our condition, and its treatment.
Research into vitiligo falls roughly into three areas: what causes vitiligo; what treatments slow or stop the vitiligo and what treatments stimulate re-pigmentation.
For example, this year the HI-Light trial will report on its findings on a particular treatment for vitiligo. This UK study, that some of you may have taken part in, was looking at treatment with a hand-held UVB device, alongside use of a cream to enhance the effects of the UVB. Part of the trial’s interest to vitiligo patients in the UK would be to see results that meant the NHS developed a programme whereby we could have these hand-held devices at home for treatment of small patches, say on the hands or face, meaning less time taken up with treatment away from work, school or university or home life.
The trial was a randomised, controlled trial, and if you are looking at a piece of research and seeing if you should trust the results, perhaps to make a decision about your treatment or making a lifestyle change, this is what you should be looking for.
What does Randomised and Controlled mean?
- Randomised or Random Allocation
This means that if you volunteered to take part in a study, you would be randomly assigned to a different group within the trial, and not be told what group you were in.
It means a study in which a number of similar people (say all with stable, non-segmental vitiligo) are randomly assigned to two (or more) groups to test a specific drug, treatment or other intervention, without taking any similarities or differences between all the people volunteering into account. This randomisation means that each individual has the same chance of having each intervention.
There might be three groups in the trial, which would comprise, for example, those receiving the active treatment, those receiving an inactive treatment or a placebo and a comparison treatment. The researchers wouldn’t therefore choose to put all the people with vitiligo on their face into the active treatment group, because they believed that that group would respond better to the active treatment, but the volunteers would be assigned into a group that was chosen for them by, perhaps, a computer-generated random sequence.
The groups are followed up to see how effective the experimental intervention was. Follow up in vitiligo trials tends to look and see how long the re-pigmentation lasts.
The results are then measured at specific intervals (in the HI-Light trial this was at three, six and nine months.
This method is also used to reduce bias. So, for example, vitiligo researchers might be pre-disposed to believe that facial vitiligo would respond better to treatment and look for that result being replicated in their trial.
A study should have at least twenty people in it for the results to be trustworthy – otherwise the risk is that the treatment effects that you see are random chance.
You will very often see people saying that they tried different things which they claim cured their vitiligo or caused them to re-pigment. You are very welcome to try anything that gives you some feeling of hope or control over your vitiligo however one person’s claims does not make a reliable result.
This refers to the ability to get the same or similar result each time a study is repeated with a different population or group. This is assessed by complex statistical calculations.
- Published Research
Research results are published in medical or scientific journals where they are peer-reviewed and subjected to comments and questions. If someone says they have a product that treats vitiligo effectively and they’ve never published their study, that raises questions about the effectiveness of the research, or that they are trying to keep the results from the public or other scientists because the results didn’t support their theory. The process of designing and carrying out a randomised controlled trial is very rigorous in the UK and subject to many regulations, and ethical considerations.
- Longitudinal studies
When looking at the effect of something like diet on your vitiligo, what’s called a longitudinal study is used. These are very difficult to maintain because you are asking people first to control strictly an aspect of their daily life, for example excluding or including something in their diet, secondly to be consistent about that over a long period and finally, to be completely honest about it!
- Anecdotal evidence
If one or two people say that they have cured or effectively treated their vitiligo with some (unusual or otherwise) treatment this is just someone’s account of what happened to them and may well not be true of a group of people who then follow the same treatment. There is no proof that this treatment works beyond one person’s anecdote, and no control of other variables in their life. For example, someone may say that they started taking a supplement in May one year, and saw pigment patches coming back on their face. This may actually relate to them starting to walk to work again after the winter, and getting incidental sun exposure, rather than the supplement itself, but we have no control of those variables so cannot tell.
Because vitiligo can be so distressing, we all respond with interest to news about new trials, or to people’s claims. It is better to wait for a properly conducted trial to be done before you make any changes to treatment, and to follow reputable clinical resources to ensure the information you use is the best possible.
One of the best sources of information is the Cochrane Review, which does all the work for you in analysis of information from trials and tells you what shows a positive effect. It can be found here:
- Should I take part in research trials?
Yes, please do! The more of us willing to take part, if we are eligible, means the more likely that meaningful results will be found for us all.