International Initiative for Outcomes for vitiligo trials (INFO)

Summary In order to develop and test a treatment, researchers measure an ‘outcome’. For example the ‘outcome’ might include a measure of how fast a white patch gets its color back (repigmentation) in vitiligo. Vitiligo is a skin condition, which causes white patches of the skin and sometimes hair. Currently, there is no cure nor firm clinical recommendations for the treatment of vitiligo. One of the main reasons behind this is that different studies measure different outcomes; therefore the studies can't be combined and compared. Recently, the International INitiative for Outcomes for vitiligo (INFO for vitiligo), which includes patients, their caregivers, medical journal editors and doctors from over 24 countries worldwide, have come to an agreement over a set of outcomes for vitiligo, which should be measured in every trial: repigmentation of skin lesions, side effects/harms of treatment and how long the colour stays after repigmentation of vitiligo lesions has occurred. Still, there was no agreement amongst patients and clinicians on which scale (outcome measure) should be used to measure repigmentation. This means that even if all the future trials measure repigmentation, but use different scales to do so, study results still can't be combined and compared. This international study was conducted with an aim to define successful repigmentation from patients’ point of view and propose how and when repigmentation should be evaluated in clinical trials in vitiligo. The authors conducted 3 workshops with vitiligo patients and their parents/care givers in the U.S.A. 73 participants were recruited. “Successful repigmentation” from patients’ perspective means achieving over 80% of repigmentation in a vitiligo patch. Both percentage of repigmentation quartiles (0‐25%, 26‐50%, 51‐79%, 80‐100%) and cosmetic acceptability of the results from patients’ point of view, should be measured in every trial. In conclusion, this was the largest patients’ outcomes workshop. Unity among the researchers on using the same scales to measure repigmentation in future trials will bring richer data and therefore clearer clinical recommendations. Linked Article: Eleftheriadou et al. Br J Dermatol 2019; 180:574–579