GRAPPA Updates Core Outcome Set for PsA
The GRAPPA-OMERACT PsA Working group recently updated the core set of outcomes to be measured in psoriatic arthritis (PsA) clinical trials to reflect both patients’ and physicians’ priorities. The updated PsA Core domain set received 90% endorsement at the OMERACT meeting held on May 11 to 15th in Whistler, B.C. Canada.
The updated 2016 PsA domain set includes: musculoskeletal disease activity (which now includes enthesitis, dactylitis, and spine symptoms in addition to peripheral arthritis) and skin disease activity (including nail disease), pain, patient global assessment, physical function, HRQoL, fatigue and systemic inflammation. Changes from the 2006 Core Domain set include moving fatigue and systemic inflammation to the inner circle (to be collected in all trials of PsA) and moving structural damage, participation, and emotional wellbeing to the middle circle (strongly recommended but not required for all clinical trials). Four new items were also added to the research agenda (stiffness, independence, treatment burden, and sleep).The OMERACT-PsA Working group has been working over the past two years to update the Core Domain Set in order to integrate our increased knowledge of the disease and to include patients with PsA in the process. The working group investigators conducted multiple research work streams over the past years: a systematic literature review of outcomes assessed in PsA clinical trials and longitudinal observational studies; international qualitative focus groups on five continents to identify outcomes important to people with PsA; international surveys with people with PsA and physicians to prioritize resulting domains; and an international face-to-face meeting with 12 people with PsA and 12 physicians using the nominal group technique (NGT) method to draft a commonly agreed upon updated PsA core outcome set. Patient research partners (PRPs) were involved in each project and one co-chaired the working group. These methods were published in detail in a set of articles in the Journal of Rheumatology (1, 2).
Future research directions for our working group are development of a PsA core outcome measurement instrument set, study of PsA specific contextual factors and adverse events and study of additional important domains for people with PsA.
GRAPPA (Group for Research and Assessment of Psoriasis and Psoriatic Arthritis) is organized exclusively for non-profit, educational, and scientific purposes, specifically to facilitate sharing of information related to psoriasis and psoriatic arthritis, networking among different medical disciplines that see psoriasis and psoriatic arthritis patients, and to enhance research, diagnosis and treatment of psoriasis and psoriatic arthritis.
Welcome to the GRAPPA website! Registration is now open for the GRAPPA 2016 Annual Meeting and Trainees Symposium in Miami, FL, the evening of July 14th through the late afternoon of July 16th. Members: You must first log in with your GRAPPA username/password to register. To set these up, click the purple MEMBER LOGIN box above. If you do not know your password, click the “Forgot Your Password” link below the gray box. It will send a message to the email address you have on file with GRAPPA and allow you to create a password. You may also create a new username this way. Then you are ready for the next step: https://grappa.memberclicks.net/register-for-annual-meeting-core-and-invitees. If you are not a member of GRAPPA and are an interested medical professional, see the member application form above under the About tab.