The PROCLIPI international registry of early-stage mycosis fungoides identifies substantial diagnostic delay in most patients.
Julia J ScarisbrickP QuaglinoH M PrinceE PapadavidE HodakM BagotO ServitjeE BertiP Ortiz-RomeroRudolf StadlerA PatsatsiR KnoblerE GuenovaF ChildS WhittakerVasiliki A NikolaouC TomasiniI AmitayH Prag NavehC Ram-WolffM BattistellaS Alberti-ViolettiR StranzenbachV GargalloC MuniesaT KoletsaC JonakS PorkertC MitteldorfT EstrachA CombaliaM MarschalkoJ CsomorA SzepesiA CozzioR DummerN PimpinelliV GrandiM Beylot-BarryA Pham-LedardM WobserE GeissingerU WehkampM WeichenthalR CowanE ParryJ HarrisR WachsmuthD TurnerA BatesE HealyF TrautingerJ LatzkaJ YooB VydianathR Amel-KashipazL MarinosA OikonomidiA StratigosM-D Vignon-PennamenM BattistellaF ClimentE Gonzalez-BarcaE GeorgiouR SenettaP ZinzaniL VakevaA RankiA-M BusschotsE HaubenA BervoetsF J S H Woei-A-JinR MatinG CollinsS WeatherheadJ FrewM BayneG DunnillP McKayA ArumainathanR AzurdiaK BensteadR TwiggerK RiegerR BrownJ A SanchesD MiyashiroO AkilovS McCannH SahiF M DamascoC QuerfeldA FolkesC BurC-D KlemkeP EnzR PujolK QuintL GeskinE HongF EvisonM VermeerL CerroniW KempfY KimR WillemzePublished in: The British journal of dermatology (2018)
This confirmed early-stage MF cohort is being followed-up to identify prognostic factors, which may allow better management and improve survival by identifying patients at risk of disease progression. This study design is a useful model for collaboration in other rare diseases, especially where pathological diagnosis can be complex.