Research Associates APRIL 17, 2016 TORONTO, CANADA 1

2 Research Coordinators

Overview 45 coordinators at the meeting, representing 34 centers double the size of last year’s meeting Three coordinator-centered sessions including 2 pre-meeting sessions Coordinator presence in a majority of the workgroup sessions 3

RAAC Working Mission Serve CARRA and its workgroups to advance pediatric rheumatology research and aid in the professional development of CARRA research associates 4

Overarching questions 1.What would you like to see from CARRA as a coordinator in the next 6 months? Next 12 months? 5 years? 2.How do you see yourself growing in the organization? 3.How do you see the role of coordinators in CARRA evolving in the future? 5

Common Themes Improving the perception and visibility of coordinators in CARRA Providing educational opportunities (within rheumatology and in general research) to coordinators Working collaboratively across sites to improve knowledge, research, and success Establishing communication between coordinators at different sites Implementing coordinator-driven research efforts 6

7 EducationCollaboration Communication Coordinator Research Support CARRA Research and The CARRA Workgroups Professional Development

Education Needs: General Rheumatology and Coordinator specific knowledge Solutions: Tools to transition in new coordinators Glossary of common terms and list of rheum acronyms/abbreviations Utilize experience from established coordinators Educational webinars 8

Collaboration Needs: Better utilize site practices to improve practices network wide Solutions: Build collaboration portal for Coordinators Share toolkits and resources on Coordinator website Develop a new coordinator “welcome packet” Establish coordinator mentoring program 9

Communication Needs: Infrastructure that allows coordinators to easily communicate with each other Solutions: Utilize the CARRA website features to disseminate info Establish a means of notification by which the RAAC (Chair/Vice Chair) are notified of coordinator changes at sites, so that new coordinators can be contacted early on Host a monthly call or webinar for coordinators 10

Coordinator-led Research Needs: Mechanisms for developing and conducting coordinator-led research Solutions: Create a network of coordinators interested in coordinator- driven research Develop research plans that involve Legacy data Implement research portal on website for coordinators 11

What’s Next? Primary 6 month goals ◦Complete research coordinator portion of website in conjunction with Chris Gentle ◦Establish a discussion forum for coordinators ◦Work with Jason Jones and DCRI for a notification mechanism when new coordinators come onto the Registry ◦Follow up with coordinators to begin the development of a research collaboration network 12

Longer term… 12 month goals ◦ Create a welcome packet for new coordinators ◦ Establish monthly coordinator calls ◦ Implement a coordinator mentor/mentee program ◦ Start quarterly educational webinars Constantly simmering… ◦ Research coordinator initiated- and funded- research projects ◦ Publications ◦ Continue to foster a collaborative relationship with CARRA membership at large 13

Small Centers APRIL 17, 2016 TORONTO, CANADA 14

Small centers: from SIG to committee  Importance of small centers to CARRA’s progress  New vice-chair position:  5% salary support  announcement with scope of work will go out soon  upcoming election, to start July 1  Small centers pilot grants  In addition to disease committee and CARRA-wide grant initiatives  Up to $5,000 each (at least 3 projects can be funded)  Need help with developing the program: RFA, review 15

What’s a small center?  Historically “1 or 2 pediatric rheumatologists”  Morphed to “less than 3”  Change with changing times  Agreement: “up to 3 pediatric rheumatologists”  Not FTE-based, not based on specific hat 16

Registries, old and new  Legacy registry: performance of small centers identical to large  ?Under-represented in publications  In rare diseases every patient enrolled matters  New registry  “Stalled” sites : expedite activation  Facilitate coordinator reach-out – network  FAQ/ tips and tricks  IRB issues – need for specific contact at DCRI  Prioritize implementation of centralized IRB (Reliant)  Encourage addition of new sites 17

Communication  Calls? (time zones, schedules)  ? (already flooded)  Twitter? (ha)  *** Small centers list serve (asynchronous, selective) 18

If you’re looking for something to do...  Run for Small Centers Committee Vice-Chair  Help start the small centers pilot grant program  Apply for a grant once the program’s ready  Become liaison to TRTC or your disease committee  Help get the Twitbooks thing going (list serve, actually)  For the Registry: if you’ve done it, help others do it too  19

Small Centers Goals  Election of first Vice-Chair  Launching of small centers pilot grant program  Registry activation of all small centers who wish to participate  First connections started for Coordinator Assistance Network  Record first exchange on small centers list serve  First non-legacy center joins new Registry  20

Early Investigators APRIL 17, 2016 TORONTO, CANADA 21

What’s Our Vision 22 old investigators

What’s Our (Real) Vision Building a network of early investigators to provide a supportive platform to sustain CARRA’s future research base What is an early investigator? ◦Seven years post-fellowship (fellowship completion in 2009 or later) 23

What’s the Challenge? How do I know what to say ‘no’ to? How do I raise my 'brand' within my institute and externally? My greatest struggle is not having enough time... I have at least 3 manuscripts to finish & submit, and I'm having trouble keeping up with enrollment of my patients into registries. Finally, I'm not willing to give up my clinical time - I would like to learn how to participate in research without having to lead it. Or collaborating so that I can address the things I care about despite my limited time. I have unsuccessfully applied for 3 K-level grants in the past couple years. I'm starting to feel like I need to make a major change in course. 24

What’s the Challenge? How do I balance grant writing with clinical responsibilities when I don't have any funding but need the time to write grants. And then how do I balance executing the grant with clinical responsibilities when the grant is supposed to be a good thing, but actually just feels secretly overwhelming. Oh and how to also be a good mother and wife at the same time. And how do I feel less intimidated about all of these things which I secretly think I don't have the skills for. I am feeling a little overwhelmed at the moment! 25

What are we trying to do 2 nd annual Early Investigator Meeting 26

CARRA RWT Pilot Purpose: Establish a CARRA based Research & Writing Team (RWT) which would facilitate the dissemination of information learned through the CARRA registry and related research projects

CARRA RWT Pilot Goals: ◦Support early investigator development, collaboration ◦Promote utilization of CARRA network resources (Registry, CTPs) ◦Facilitate publication of CARRA research projects ◦Develop a work group with deep core knowledge of CARRA resources

CARRA RWT Proposed team members: ◦EI chair/Vice-Chair ◦Registry Fellow ◦Biostatistician ◦Publications Committee Representative ◦Faculty with Project specific expertise ◦Disease work group representative(s) ◦EC representative

CARRA RWT Pilot 30

What else are we doing CARRA EI -- PRES YIM Collaboration ◦2 travel grants for PRES YIM for CARRA Early Investigators ◦Must have accepted abstract, due May 20 – Jay if submitting ◦ ◦Genoa, Sept 27-Oct 1 31

What else are we doing “Questions for Confluence” on new CARRA website 32

What else are we doing “Questions for Confluence” on new CARRA website 33

What else are we doing? Identify how many EI have external grant funding and set 1 year goal to increase by 25% Encourage every workgroup to have at least one EI leader (currently at ~80%) Developing CARRA-wide Aims Page Review group Encouraging EI to apply for CARRA-wide grants ◦Special consideration for EI 34

Ultrasound APRIL 17, 2016 TORONTO, CANADA 35

Ultrasound Pre-courses Ed Oberle, MD/RhMSUS – Nationwide Children’s Hospital Tracy Ting, MD/RhMSUS – Cincinnati Children’s Hospital Patty Vega-Fernandez, MD/RhMSUS – Emory University Johannes Roth, MD – Children’s Hospital Eastern Ontario, Ottawa Beginner’s course, Wednesday evening – 12 participants Advanced course, Thursday morning – 16 participants Machines on loan from GE 36

Ultrasound – Beginners 4 hour session - Introduction to MSK US in pediatric rheumatology - How to start an ultrasound clinic - Introductory sonographic anatomy of wrist and fingers - Guided hands-on assessment of healthy volunteers PrePost US exam technique 23.3Describe normal anatomy US machine features and training opportunities Indications for MSK US Confidence scales (1 – none, 5 – very) 37

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Ultrasound - Advanced 39 4 hour session - Overview of US assessment of pathology and image optimization - Sonographic anatomy overview of knee and ankle - Guided hands-on assessment of active pathology PrePost US exam technique Describe normal anatomy, basic pathology Indications for MSK US Confidence scales (1 – none, 5 – very)

Comments on US course “Thank you for organizing this course; after all those hours with you guys, US started to make some sense ;)” “I wasn't sure if ultrasound would really be able to contribute anything to my patient care, or even if I would be able to perform it myself. After this course, I want to learn as much as I can about ultrasound and I can really see it impacting my future clinical care. “ “Really fabulous course. I would love to have additional similar courses in the future” "I just wanted to thank you for the wonderful course! I have learned a lot from you guys! Thanks for doing that!" “It was very helpful to have a pediatric focused course.” “Excellent!! Thank you. I would love to have this yearly (or maybe regional meetings).” “Great practice with different ages in children.” 40

Ultrasound – JIA Workgroup Purpose – For both research and clinical care, there remain several needs for defining MSUS in pediatric rheumatology including specific standardized images for each joint and standardized scoring system. 20 participants were present of varying skill level (8 completed or are enrolled in USSONAR, 7 actively using U/S in clinic, 3 ACR course, 2 fellowship training). Reviewed current literature on standardized view and scoring systems. Healthy discussion over current evidence and poor strength of scientific nature. 41

Ultrasound – Action items Prioritizing the following joints: knee, ankle, wrist Individual groups assigned to review literature on each joint to bring back to the ACR meeting for discussion on findings and proceeding forward with evaluation of standardized images Future practical exercises need to be performed to determine best views for inter-rater reliability and most sensitive views First will be in Cincinnati this summer Begin assessing items to be included for scoring (synovial recess: effusion, hypertrophy, cartilage, bony contour) Ongoing open communication with monthly teleconference meetings 42

Fellows Committee APRIL 17, 2016 TORONTO, CANADA 43

Fellow Committee Update Structure ◦15 Voluntary Fellow Leaders ◦2 Fellow Co-Chairs ◦Junior Advisors 44

Fellow Committee Update ACR ◦Coordinated a social event attended by 25 fellows ◦Recruitment event attended by 30 fellows 45

Fellow Committee Update Professional Development ◦40 Registered ◦29 in

Fellow Committee Update ◦Document Preparation ◦Job Search ◦Interview Skills ◦Contract Negotiation ◦Securing Grant Funding ◦Productivity Metrics ◦Work/Life Balance ◦Getting Involved with CARRA ◦Finding a Mentor ◦Session with AF leadership ◦Ultrasound Primer 47

Fellow Committee Update 2016 CARRA Meeting ◦Attendees: 58 out of 84 fellows (69%) ◦First Time Attendee Roundtable ◦9 Posters (5 First Author) ◦Resident-Fellow Mentors ◦Networking Social Event ◦Yankee-Blue Jay Game 48

Fellow Committee Update Future Plans ◦Nomination of new fellow co-leaders ◦Encourage use of registry data ◦ACR Event ◦Professional Development Meeting 2017 ◦CARRA/PRSYM