The PROCLIPI international registry of early-stage mycosis fungoides identifies substantial diagnostic delay in most patients

JJ Scarisbrick; P Quaglino; HM Prince; E Papadavid; E Hodak; M Bagot; O Servitje; E Berti; P Ortiz-Romero; R Stadler; A Patsatsi; R Knobler; E Guenova; F Child; S Whittaker; V Nikolaou; C Tomasini; I Amitay; H Prag Naveh; C Ram-Wolff; M Battistella; S Alberti-Violetti; R Stranzenbach; V Gargallo; C Muniesa; T Koletsa; C Jonak; S Porkert; C Mitteldorf; T Estrach; A Combalia; M Marschalko; J Csomor; A Szepesi; A Cozzio; R Dummer; N Pimpinelli; V Grandi; M Beylot-Barry; A Pham-Ledard; M Wobser; E Geissinger; U Wehkamp; M Weichenthal; R Cowan; E Parry; J Harris; R Wachsmuth; D Turner; A Bates; E Healy; F Trautinger; J Latzka; J Yoo; B Vydianath; R Amel-Kashipaz; L Marinos; A Oikonomidi; A Stratigos; M-D Vignon-Pennamen; M Battistella; F Climent; E Gonzalez-Barca; E Georgiou; R Senetta; P Zinzani; L Vakeva; A Ranki; A-M Busschots; E Hauben; A Bervoets; FJSH Woei-A-Jin; R Matin; G Collins; S Weatherhead; J Frew; M Bayne; G Dunnill; P McKay; A Arumainathan; R Azurdia; K Benstead; R Twigger; K Rieger; R Brown; JA Sanches; D Miyashiro; O Akilov; S McCann; H Sahi; FM Damasco; C Querfeld; A Folkes; C Bur; C-D Klemke; P Enz; R Pujol; K Quint; L Geskin; E Hong; F Evison; M Vermeer; L Cerroni; W Kempf; Y Kim; R Willemze

Journal article

The PROCLIPI international registry of early-stage mycosis fungoides identifies substantial diagnostic delay in most patients

JJ Scarisbrick, P Quaglino, HM Prince, E Papadavid, E Hodak, M Bagot, O Servitje, E Berti, P Ortiz-Romero, R Stadler, A Patsatsi, R Knobler, E Guenova, F Child, S Whittaker, V Nikolaou, C Tomasini, I Amitay, H Prag Naveh, C Ram-Wolff Show all

British Journal of Dermatology | Wiley | Published : 2019

DOI: 10.1111/bjd.17258

Download PDF

Abstract

BACKGROUND: Survival in mycosis fungoides (MF) is varied and may be poor. The PROCLIPI (PROspective Cutaneous Lymphoma International Prognostic Index) study is a web-based data collection system for early-stage MF with legal data-sharing agreements permitting international collaboration in a rare cancer with complex pathology. Clinicopathological data must be 100% complete and in-built intelligence in the database system ensures accurate staging. OBJECTIVES: To develop a prognostic index for MF. METHODS: Predefined datasets for clinical, haematological, radiological, immunohistochemical, genotypic, treatment and quality of life are collected at first diagnosis of MF and annually to test agai..

View full abstract