PT  - JOURNAL ARTICLE
AU  - Gulen Hatemi
AU  - Yesim Ozguler
AU  - Haner Direskeneli
AU  - Alfred Mahr
AU  - Ahmet Gul
AU  - Virna Levi
AU  - Sibel Z. Aydin
AU  - Gonca Mumcu
AU  - Ozlem Sertel-Berk
AU  - Randall M. Stevens
AU  - Hasan Yazici
AU  - Peter A. Merkel
TI  - Current Status, Goals, and Research Agenda for Outcome Measures Development in Behçet Syndrome: Report from OMERACT 2014
AID  - 10.3899/jrheum.141147
DP  - 2015 Dec 01
TA  - The Journal of Rheumatology
PG  - 2436--2441
VI  - 42
IP  - 12
4099  - http://www.jrheum.org/content/42/12/2436.short
4100  - http://www.jrheum.org/content/42/12/2436.full
SO  - J Rheumatol2015 Dec 01; 42
AB  - Objective. There is an unmet need for reliable, validated, and widely accepted outcomes and outcome measures for use in clinical trials in Behçet syndrome (BS). Our report summarizes initial steps taken by the Outcome Measures in Rheumatology (OMERACT) vasculitis working group toward developing a core set of outcome measures for BS according to the OMERACT methodology, including the OMERACT Filter 2.0, and discussions during the first meeting of the BS working group held during OMERACT 12 (2014).Methods. During OMERACT 12, some of the important challenges in developing outcomes for BS were outlined and discussed, and a research agenda was drafted.Results. Among topics discussed were the advantages and disadvantages of a composite measure for BS that evaluates several organs/organ systems; bringing patients and physicians together for discussions about how to assess disease activity; use of organ-specific measures developed for other diseases; and the inclusion of generic, disease-specific, or organ-specific measures. The importance of incorporating patients’ perspectives, concerns, and ideas into outcome measure development was emphasized.Conclusion. The planned research agenda includes conducting a Delphi exercise among physicians from different specialties that are involved in the care of patients with BS and among patients with BS, with the aim of identifying candidate domains and subdomains to be assessed in randomized clinical trials of BS, and candidate items for a composite measure. The ultimate goal of the group is to develop a validated and widely accepted core set of outcomes and outcome measures for use in clinical trials in BS.