CARRA Lupus Work Group 2016 Annual Scientific Meeting APRIL 17, 2016 TORONTO, CANADA 1

Abstracts/Publications 8 lupus related abstracts at CARRA meeting

Funded CARRA Proposals 2016 Predicting Early Atherosclerosis in Childhood-onset SLE (PEACE), an APPLE Substudy PI: Jennifer Cooper $9860 Perspectives on Mental Health Intervention for Youth with Rheumatic Conditions – A Mixed Methods Study of Patients, Parents and Behavioral Health Providers PI: Andrea Knight $25,0

Cutaneous Lupus Leaders: Lisa Arkin, Kaveh Ardalan Collaborators: Ben Chong, Victoria Werth, Heather Branding-Bennett

Cutaneous Lupus Reviewed peds rheum/derm survey results re: research priorities, approaches to treatment of discoid LE. Cutaneous Lupus Activity and Severity Index (CLASI) training Refined cutaneous lupus CARRA registry items

Cutaneous Lupus: Future Projects Determine best practices for screening for SLE in patients presenting with discoid LE Multicenter retrospective assessment of discoid LE: risk factors, treatment, natural history Use registry to determine frequency of, risk factors for progression from isolated cutaneous lupus to SLE. Determine definitions of active and refractory cutaneous lupus.

Lupus Nephritis Leaders: Tasha Ruth, Scott Wenderfer Collaborators: Beatrice Goliav, Sherene Mason, Samriti

Refractory Class IV LN Peds rheum-neph survey with consensus on: Refractory disease is no response at 3 months, requiring a change of therapy. *further define. Recommendation for renal biopsy if no response at 6 months to evaluate damage vs. refractory disease. Partial response at 6 months does not necessarily mean refractory disease (may take >6 months to reach complete response). Lack of consensus on treatment approach decisions re: inclusion of rituximab.

Class V LN Peds rheum-neph survey with consensus on: Outcome measures Use of ACE/ARB Use of immunosuppression, with some variation CTP: To be or not to be? Knowledge gap identified as important by peds rheum and nephrology Limited evidence basis for treatments Small patient population Best use of resources?

MMF Withdrawal Considering MMF withdrawal protocol for patients with LN in remission Starting with rheum/neph survey and patient/parent survey re: MMF withdrawal attitudes, practices

Behavioral Health Providers Survey Project Objective: To describe current & potential roles for rheumatology-affiliated social workers & psychologists in mental health intervention in youth with rheumatologic conditions Design: cross-sectional survey and interviews 11 Apr-Aug 2016 Surveys May –Oct Interviews Nov-Feb Analysis & Manuscript Mental Health Leader: Andrea Knight

Patient/Parent-Engaged Survey Project Objective: To determine mental healthcare needs for youth with rheumatologic conditions using a patient/parent- engaged survey utilizing the PARTNERS platform Design: cross-sectional survey Specific Aims: 1.To describe mental health problems, current treatment use, preferences and barriers for youth with SLE, JIA, JDM (ages years) from the perspective of patients & parents 2.To examine differences in the above by: a) disease group (SLE, JIA, JDM) b) patient vs parent 12 Identified and refined patient/provider survey elements

Mood Disorders Screening Project Objectives: 1)To describe the prevalence and associated risk factors of depression and anxiety in lupus patients across different demographic groups in a multi-centered CARRA study 2)To test the feasibility of systematic mood disorder screening of youth with lupus for depression and anxiety, across different CARRA sites Design: multicenter (7 centers), prospective observational study Study population: youth with SLE ages yrs Measures (electronically via iPads/ Redcap): depression and anxiety screenings, QOL, illness attitudes, self-perception, and health-related behaviors, feasibility/acceptability - Collected at baseline and 3 month follow-up 13

APS Leader: Barry Myones Collaborator/speaker: Doruk Erkan Reviewed APS literature/recent research Identified potential multidisciplinary collaborators Refined APS related registry data elements Brainstormed next projects NEW

Translational/Biorepository Registry Deb Levy Rebecca Kunder Anne Stevens

Thanks to all who attended! …to Houston and beyond!!!