Phone: (414) 918-9822    Email: [email protected]

AM18 Session Descriptions

Wednesday, April 11, 2018                    Pre-Conference Meetings

 

Industry Representatives: (I) Following the meeting description indicates the session is open for industry registration. No more than three (3) industry representatives per company may attend a session.

Advanced MSK Ultrasonography for Rheumatologists (Limit: 15)

Wednesday, April 11 - 1:00 PM – 5:00 PM

 

Session Leaders

Hulya Bukulmez, [email protected]

Diedre De Ranieri, [email protected]

Edward Oberle, [email protected]

Tracy Ting, [email protected]

Patricia Vega-Fernandez, [email protected]

 

Aims/Goals: During this workshop participants with some experience in MSK ultrasonography will be offered an opportunity to focus on some of the more difficult joints, including wrists and ankles, with focus on identifying pathology.  The workshop will consist of an introductory lecture followed by hands on scanning (note: scanning may not be on pediatric patients with active JIA).

Note: If signing up for this session, attendance is mandatory for meeting reimbursement.


Fellows Meeting

Wednesday, April 11 - 4:00 PM – 7:00 PM

 

Session Leaders

Cuoghi Edens, [email protected]

Miriah Gillispie, [email protected]

Aims/Goals: Part 1 of 2 program  specifically geared towards pediatric and medpeds rheumatology fellows covering topics of: General information about CARRA, how to find a job and write documents for your job search, how to balance a career and life outside of work. Followed by a networking event offsite from 7-9pm.


Thursday, April 12, 2018                        Pre-Conference Meetings

Research Coordinator Breakfast

Thursday, April 12 - 7:00 AM – 7:55 AM

 

Session Leaders

Jennifer Woo, [email protected]

Marsha Malloy, [email protected]

Aims/Goals: This breakfast is designed as a welcome for Research Coordinators to the CARRA Meeting. We will be doing introductions, explaining what to expect from the CARRA Meeting, and presenting an update on the Research Coordinator Advisory Committee’s (RCAC) activities and upcoming opportunities.


Introduction to MSK Ultrasonography for Rheumatologists (Limit: 15)

Thursday, April 12 - 8:00 AM – 12:00 PM

 

Session Leaders

Hulya Bukulmez, [email protected]

Diedre De Ranieri, [email protected]

Edward Oberle, [email protected]

Tracy Ting, [email protected]

Patricia Vega-Fernandez, [email protected]

 

Aims/Goals: During this workshop participants with no prior hands on experience in MSK ultrasonography will be offered an introduction to the basics of MSK ultrasonography. The workshop will consist of an introductory lecture followed by hands on scanning on healthy adults.

 

Note: If signing up for this session, attendance is mandatory for meeting reimbursement.


Research 101 Course (Early Investigators, Fellows, Coordinators, Small Centers) (Includes Lunch)

Thursday, April 12 - 8:00 AM – 12:30 PM

 

Session Leaders

Erica Lawson, [email protected]

Kristen Hayward, [email protected]

 

Aims/Goals: Are you a young CARRA member who is looking to get help with moving your career forward? The Research 101 course will bring together your colleagues to provide didactic sessions along with ample networking opportunities. If you are doing any amount of research, from enrolling patients in a registry to developing investigator-initiated projects, you will benefit from attending this meeting.

Note for Coordinators: All RCs must attend either this session or the TRTC meeting if applying for reimbursement for Wednesday night hotel.


TRTC Meeting (Includes Lunch) (I)

Thursday, April 12 - 8:00 AM – 2:00 PM

 

Session Leaders

Peter Nigrovic, [email protected]

Lauren Henderson, [email protected]

 

Aims/Goals: The Translational Research and Technology Committee (TRTC) seeks to help CARRA become an engine of translational research in the pediatric rheumatic diseases.  Our immediate goals include:  1) Establishment of a thriving CARRA-wide biorepository that ultimately increases biosample access to CARRA members who would like to conduct translational research on these specimens.  2) Development of standard operating procedures for biosample collection. 3) Assisting other CARRA disease specific work groups in developing translational arms to CTPs and related studies. 4) Identifying funding to conduct high level data analysis (genomics, transcriptomics, metabolomics, etc…) on biosamples collected through CARRA.    

8:00 AM - 8:30 AM       Introduction

- Mission/vision of the TRTC

- Organizational structure of TRTC

- Plan for the meeting: what deliverables are we aiming for?

 

8:30 AM - 9:00 AM       Updates from TRTC Workgroups

-Biobanking

-SOP

- Data Management.

-Governance

-CARRA Translational Initiative

 

9:00 AM - 10:30 AM        Workgroup Liaisons

-Goal to identify individuals in the TRTC who will facilitate communication between the TRTC and disease specific workgroups in an effort to promote translational research within CARRA.

 

10:30 AM - 12:00 PM        CARRA Translational Initiative Working Session

-The goal of the CARRA Translational Initiative is to leverage the established infrastructure of the CARRA Registry, together with next-generation analytic technologies to better understand the pathophysiology of pediatric autoimmune diseases, thereby speeding the development of targeted therapies and helping to usher in the era of precision medicine in pediatric rheumatology.  This will be a working session with representatives of the Accelerating Medicines Partnership (AMP) to discuss how to build this research infrastructure.   

-Guest participants include Deepak Rao, MD, PhD (to speak on using high-dimensional analyses to study RA) and Bill Apruzzese, MPH  (executive director of AMP).   

 

12:00 PM - 12:30 PM      Lunch

 

12:30 PM - 2:00 PM         CARRA Translational Initiative Working Session

-See above

 

Note for Coordinators: All RCs must attend either this session or the Research 101 Course  if applying for reimbursement for Wednesday night hotel.


Fellows Meeting

Thursday, April 12 - 12:00 PM – 3:30 PM (Includes Lunch)

 

Session Leaders

Cuoghi Edens, [email protected]

Miriah Gillispie, [email protected]

Aims/Goals:  Part 2 of a program specifically geared towards pediatric and medpeds rheumatology fellows covering: AMIGO mentorship, detailed personal CV review, nuts and bolts of a CARRA meeting, finances 101 for the graduating fellow, and a panel of young faculty members to answer questions about the job search and transition from fellow to attending.


Research Coordinator Meeting

Thursday, April 12 - 1:00 PM – 5:00 PM

 

Session Leaders

Jennifer Woo, [email protected]

Marsha Malloy, [email protected]

Aims/Goals: This session is designed to provide comprehensive overviews of the diseases to be included in the CARRA Registry in 2018 (JIA, JDM, SLE, and Scleroderma). Presentations will cover disease manifestations and disease-specific measures being collected. The second part of the session will allow coordinators to either 1) participate in mentoring discussions or 2) talk with DCRI representatives about regulatory- or data-related issues.


Small Centers Meeting

Thursday, April 12 - 1:00 PM – 3:00 PM

Session Leaders

Peter Blier, [email protected]

Theresa Wampler-Muskardin, [email protected]

Aims/Goals: The purpose of the committee is to remove barriers and provide the resources needed to support participation in research by investigators and coordinators at small centers. To this end, we need to develop mechanisms to identify the "recurrent themes" in barriers to participation, and identify the ones which can be mitigated or eliminated by CARRA members using the organization's resources. Our goals for the next year (and not just the meeting) are to use the information gathered so far to create a first set of programs and activities to increase both the number of members actively involved in the Registry and other CARRA research programs, and facilitate initiation of new initiatives by CARRA small centers members. 


Early Investigators Meeting Track 1 – Aims Review Session with Senior Faculty (Research-Focused Career Track)

Thursday, April 12 - 2:30 PM – 4:30 PM

 

Session Leaders

Erica Lawson, [email protected]

Kristen Hayward, [email protected]

Aims/Goals: Are you preparing a grant (CARRA, RRF, K, etc.)? Present your aims page to senior CARRA researchers and get the feedback you need for a successful application. We’ll have room for up to 8 EIs in this session, so please RSVP to claim your spot.


Early Investigators Track 2 – Making Your Work for CARRA Work for You (Clinical Career Track)

Thursday, April 12 - 2:30 PM – 4:30 PM

 

Session Leaders

Erica Lawson, [email protected]

Kristen Hayward, [email protected]

Aims/Goals: In this session, you’ll learn how working with CARRA can help you prepare for promotion. You’ll also hear from disease-specific work group leaders about opportunities to participate in meaningful research that can fit into your busy clinical schedule.


Parent/Patient Orientation

Thursday, April 12 - 3:00 PM – 5:30 PM

 

Session Leaders

Vincent Del Gaizo, [email protected]

Suz Schrandt

Aims/Goals: Orientation for parents/patients attending the CARRA conference. Workgroup leaders who are encouraging parent/patient participation in their meetings are invited to attend and discuss their meeting.


Friday, April 13, 2018

Concurrent Disease Group Research Committee Meetings

Friday, April 13 - 8:30 AM – 9:20 AM

 

Aims/Goals: Most Disease Committees use the time during this session to update the members of their committee on important issues and review plans for the remainder of the meeting. In addition, this is one of the few opportunities for the full committee membership to meet together, so this is an ideal time to discuss issues of general interest, such as upcoming studies, new information or for brainstorming future directions.


Concurrent Workgroup Sessions #1

Friday, April 13 - 9:30 AM – 12:30 PM

 

JIA: Inactive Disease (I)

Friday, April 13 - 9:30 AM – 12:30 PM

 

Session Leaders

Daniel Horton, [email protected]

Sarah Ringold, [email protected]

Aims/Goals: To discuss, plan, and conduct research on approaches to managing inactive JIA and outcomes after treatment withdrawal and re-initiation. Ideas for new projects and new opportunities for collaboration around inactive JIA are welcome.


JIA: Ultrasound Meeting #1 (I)

Friday, April 13 - 9:30 AM – 12:30 PM

Session Leaders

Edward Oberle, [email protected]

Tracy Ting, [email protected]

Patricia Vega-Fernandez, [email protected]

Aims/Goals: The workgroup aims to develop standardized, methodical MSKUS protocols for image acquisition and scoring to help with clinical management as well as outcome measures in research. There is a manuscript in process regarding our success in developing a reliableq knee scoring system (presented at ACR).  At the CARRA meeting this year, our goal is to continue this work now focusing on the ankle to generate an equally successful tool.  We also hope to support the pediatric MSK US community by providing an opportunity for workgroup members to discuss their interests and project proposals with a group of possible collaborators as we continue to identify knowledge gaps in the MSKUS literature.   


JIA: Uveitis (I)

Friday, April 13 - 9:30 AM – 12:30 PM

Session Leaders

Egla Rabinovich, [email protected]

Sheila Angeles-Han, [email protected]

Aims/Goals:The uveitis subcommittee is dedicated to improving outcomes in pediatric uveitis. We aim to define best practice approaches to screening and therapy, and also to educate rheumatologists, patients, and families about this condition. We have several projects in progress currently and are seeking new ideas for quality improvement studies.


SLE: Mental Health (I)

Friday, April 13 - 9:30 AM – 12:30 PM

Session Leaders

Andrea Knight, [email protected]

Tamar Rubinstein, [email protected]

Aims/Goals: The aims of the workgroup are to:  1) identify ways to improve access and quality of mental healthcare for youth with SLE and other rheumatologic diseases, and  2) develop evidence for mental health interventions to improve outcomes for youth with SLE and other rheumatologic diseases. We have several projects in progress including: a survey assessing the mental health needs of patients with SLE, JIA and JDM; a multi-center study of feasibility and acceptability of mood screening in the pediatric rheumatology setting; a database study examining the impact of psychiatric comorbidity on health care utilization and medication adherence for youth with SLE. Developing projects include: examination of the impact of adverse childhood experiences on disease outcomes in pediatric rheumatology patients; pilot study of a mindfulness intervention for pediatric patients with SLE; pilot mental health intervention for JDM patients. We will focus on developing projects during the CARRA session.


SVARD: Juvenile Scleroderma Working Group (Localized Scleroderma and SCORE Update)

Friday, April 13 - 9:30 AM – 12:30 PM

 

Session Leaders

Kathryn (Cassie) Torok, [email protected]

Suzanne Li, [email protected]

Anne Stevens, [email protected]

 

Aims/Goals: First half of this session will be devoted to the CARRA SCORE study – reviewing activation of sites, key data entry components, few examples.  Second half of the session dedicated to treatments in LS – cellcept CTP and biologics.  

Note for Coordinators: Coordinators at sites participating in SCORE should plan to attend this session.


SVARD: Kawasaki Disease (I)

Friday, April 13 - 9:30 AM – 12:30 PM

 

Session Leaders

Rob Sundel, [email protected]

Gil Amarilyo, [email protected]

Cagri Yildrim Toruner, [email protected]

Srihrasha Grevich, [email protected]

Rae Yeung, [email protected]

Aims/Goals: We will plan to finalize the CES which was chosen by the KD Subcommittee at last year's meeting: Comparison of outcomes of different salvage therapies for children with KD who fail initial IVIG treatment. We will determine which KD patients are to be followed in the CES, which outcome measures will be used to assess efficacy, and most importantly, which therapies will be included in treatment arms of the CTP. These will be formalized on data collection sheets, then will be shared with the entire SVRD committee, then with CARRA, to evaluate and improve the committee's work. Once all preliminary steps are completed, that we will proceed with the actual CPT.


SVARD: Sjogren’s Syndrome (I)

Friday, April 13 - 9:30 AM – 12:30 PM

 

Session Leaders

Sara Stern, [email protected]

Jay Mehta, [email protected]

Aims/Goals: The overall aims of this working group are to improve understanding of childhood Sjogren Syndrome. During this session we will a) Review results and discuss next steps in ongoing multicenter retrospective review to evaluate applicability of adult Sjogren criteria to pediatric patients  b)  Embark on development of childhood-specific diagnostic/classfication criteria  c)Discuss enrollment of Sjogren patients in CARRA registry  d) Create working group to develop pediatric Sjogren salivary gland ultrasound image bank.


JDM: Brainstorming JDM in the CARRA Registry (I)

Friday, April 13 - 9:30 AM – 12:30 PM

Session Leaders

Adam Huber, [email protected]

Aims/Goals: The primary aim of this workgroup will be to proactively consider how to use the data that will be generated by the CARRA Registry to benefit research in JDM. This workgroup will also consider updates and improvements to the JDM component of the Registry to maximize its value. This will hopefully lead to development of research questions and assembly of writing groups in advance of data being available. It is also hoped that this session will educate and engage CARRA members both in the Registry but also in using the data that we will soon have. In addition, during this session, Dr. Lisa Rider will update committee members on a number of initiatives including active JDM clinical trials, new JDM response criteria and a proposal for an international myositis society.


Pain: CARRA Pain Research Priorities (I)

Friday, April 13 - 9:30 AM – 12:30 PM

Session Leaders

Mark Connelly, [email protected]

 

Aims/Goals: The aim of this work group meeting is to protect some time at the 2018 CARRA meeting to discuss and establish priorities for new/future pain research projects that can be uniquely achieved using CARRA's resources.  The intent is to engage members and stakeholders in discussing, prioritizing, and facilitating new projects in the area of pain, and to then identify project leaders and establish goals and timelines.  Note that this group meeting is planned for half of a session, with the other half of a session being devoted to another pain workgroup meeting (the “Pain in JIA” group).


Pain: Pain in JIA

Friday, April 13 - 9:30 AM – 12:30 PM

 

Session Leaders

Melissa Tesher, [email protected]

Brent Graham, [email protected]

Jennifer Weiss, [email protected]

Tracy Ting, [email protected]

Aims/Goals: Specific aims of the ongoing study: 1. Evaluate the utility of the PSAQ (Pain Symptom Assessment Questionnaire) in identifying JIA patients with Juvenile Fibromyalgia (JFM).  2. Identify differences amongst JIA patients with and without JFM including potential variables such as demographic data, disease characteristics, functional disability, and physician and patient/parent global assessments. Future goals: Utilize data from this study to design studies to do the following: Evaluate the effect of co-existent JFM on response to treatment (especially with regard to functional outcomes) among patients with JIA; Design targeted interventions for JIA patients with co-existent JFM, targeted at improving pain coping skills and decreasing overall pain hypersensitivity.  Evaluate the efficacy of these interventions in enhancing overall response to treatment.    


Transition (I)

Friday, April 13 - 9:30 AM – 12:30 PM

 

Session Leaders

Erica Lawson, [email protected]

Aimee Hersh, [email protected]

Peter Chira, [email protected]

Aims/Goals: To assess and improve health care quality, patient engagement and health outcomes during the transition from pediatric to adult rheumatology care.


Introduction to Analyzing CARRA Registry Data for Your Study with R

Date/Time TBD

 

Session Leaders

Mark Natter, [email protected]

CJ Inman, [email protected]

Aims/Goals: In this workgroup, we will provide a beginner's level introduction to loading, navigating, and analyzing CARRA Registry data sets (both legacy registry and current registry) using R and Rstudio. Based upon interest, we will also go over use of different graphics packages for rendering plots and charts in R using Rmarkdown and various htmlwidgets packages. The goal of this session is to familiarize attendees with the available formats and resources to efficiently load, filter, manipulate, and analyze CARRA Registry data using the open-source R platform. Attendees should bring laptops with wifi capability in order to participate in the 'hands-on' activities of the session.


CTP Advisory Committee Meeting

Friday, April 13 - 12:30 PM – 1:45 PM

 

Session Leaders

Emily von Scheven, [email protected]

Aims/Goals: Meet the members of the CARRA CTP Advisory Committee. Understand steps for developing CARRA CTPs and process for obtaining approval. Learn about different approaches for securing group consensus.


Concurrent Workgroup Sessions #2

Friday, April 13 - 2:15 PM – 5:15 PM

 

JIA: Systemic Juvenile Idiopathic Arthritis (sJIA) (I)

 

Session Leaders

Susan Shenoi, [email protected]

Kabita Nanda, [email protected]

Karen Onel, [email protected]

Aims/Goals: Continue working on incorporating PRO’s into disease activity indices. Develop and finalize the SJIA inactive disease and medication tapering CTP.  Further advocacy efforts. 


JIA: Ultrasound Meeting #2 (I)

Friday, April 13 - 2:15 PM – 5:15 PM

 

Session Leaders

Edward Oberle, [email protected]

Tracy Ting, [email protected]

Patricia Vega-Fernandez, [email protected]

Aims/Goals: The workgroup aims to develop standardized, methodical MSKUS protocols for image acquisition and scoring to help with clinical management as well as outcome measures in research. There is a manuscript in process regarding our success in developing a reliable knee scoring system (presented at ACR).  At the CARRA meeting this year, our goal is to continue this work now focusing on the ankle to generate an equally successful tool.  We also hope to support the pediatric MSK US community by providing an opportunity for workgroup members to discuss their interests and project proposals with a group of possible collaborators as we continue to identify knowledge gaps in the MSKUS literature.   


JIA: Spondyloarthritis

Friday, April 13 - 2:15 PM – 5:15 PM

 

Session Leaders

Matthew Stoll, [email protected]  

Hemalatha Srinivasalu, [email protected]

Aims/Goals: The overarching aim of this workgroup is to improve our understanding of and care for juvenile spondyloarthritis patients. Our specific aims for the 2018 meeting are: 1. To discuss results of systematic literature review on TNF failures and reach consensus on definition for TNF failure in JSpA. 2. Review of results from the recent grant cycle to study enthesitis predominant ERA. 3. Future directions and long term goal for the workgroup. We strongly encourage fellows and early investigators to engage actively. 


SVARD: Inflammatory Brain Disease

Friday, April 13 - 2:15 PM – 5:15 PM

 

Session Leaders

Heather Van Mater, [email protected]  

Eyal Muscal, [email protected]  

Susanne Benseler, [email protected]

Aims/Goals: 1. Develop CTP for treatment of NMDAR encephalitis building on the work with the Autoimmune encephalitis interdisciplinary working group (consisting of pediatric rheumatologist, neurologists, psychiatrists, and PM&R) as we develop CTPs. Development of CTPs for AE requires:  a) definitions of disease activity measures and outcome measures to use in studies b) defined diagnostic criteria and disease severity to assign treatment arms/develop inclusion criteria c) determining treatment arms, duration of therapy, and time points to assess disease activity and outcome measures.    


SVARD: Juvenile Scleroderma Working Group Systemic Sclerosis

Friday, April 13 - 2:15 PM – 5:15 PM

 

Session Leaders

Anne Stevens, [email protected]

Aims/Goals: Overall - this workgroup aims to improve the care of patients with systemic sclerosis through clinical trials. 1.  Establish ACR/EULAR classification criteria.  2.  Establish consensus-based outcomes criteria with PRES, to use for clinical trials.  3.  Initiate industry-sponsored clinical trials.  4.  Initiate comparative effectiveness studies in the context of the CARRA Registry.


SVARD: ANCA-Associated Vasculitis

Friday, April 13 - 2:15 PM – 5:15 PM

 

Session Leaders

Linda Wagner-Weiner, [email protected]    

Eric Yen, [email protected]

David Cabral, [email protected]

Aims/Goals: The primary aim is to finalize AAV-CTP details so that we will be ready to initiate this multi-center study.  To accomplish this, we aim to:  1. Update workgroup attendees on: a. previously agreed upon CTP details (from prior CARRA AAV WG meetings and post-meeting polling) b.  initial CARRA survey responses (survey to be sent out members in late winter)  2.  Discuss & resolve any outstanding CTP issues 3.  Establish AAV-CTP data collection details (selection of recommended laboratory/radiology/biopsy studies), as well as timing of data collection during the CTP study.  A secondary aim is to lay the ground work for the pVAS teaching video study, which will assess the efficacy of this tool in teaching accurate pVAS scoring by participating physicians, a very important aspect in CTP data interpretation.       


SLE: Nephritis (I)

Friday, April 13 - 2:15 PM – 5:15 PM

 

Session Leaders

Natasha M. Ruth, [email protected]  

Scott Wenderfer, [email protected]

Aims/Goals: To set up a timeline of goals for the year for each ongoing and new project.  This will be accomplished by helping pair young investigators with available, interested senior mentors.  We will also have a discussion about the role of clinical trials within our group and how to work on these trials as a collaboration with the Mid-West Pediatric consortium. We will invite senior CARRA leaders to lead the discussion.


JDM: Biologics in JDM-CTP (I)

Friday, April 13 - 2:15 PM – 5:15 PM

Session Leaders

Stacey E. Tarvin, [email protected]  

Chuck Spencer, [email protected]

 

Aims/Goals: To continue development of the JDM biologic CTP.  We will review survey results and solicit ideas within the group about the next steps in the process including funding mechanisms, solicit reviewers for the manuscript and discuss what information can be obtained from the new CARRA registry data. 


JDM: Skin Disease & JDM (I)

Friday, April 13 - 2:15 PM – 5:15 PM

 

Session Leaders

Susan Kim, [email protected]

Aims/Goals: Optimization of skin disease assessment and monitoring in JDM


Pain: Decision Support Intervention for Pain Management in JIA

Friday, April 13 - 2:15 PM – 5:15 PM

 

Session Leaders

Karine Toupin April, k[email protected]    

Jennifer Stinson, [email protected]

Mark Connelly, [email protected]  

Aims/Goals: To develop and evaluate the acceptability of an electronic decision support intervention for pain management in JIA. 


Biospecimen Collection (with the TRTC) and CARRA Studies Part 1

Friday, April 13 - 2:15 PM – 5:15 PM

 

Session Leaders

Jennifer Woo, [email protected]

Marsha Malloy, [email protected]

Laura Henderson, [email protected]

Anne Dennos, [email protected]

Aims/Goals: This session will be focused on all things biospecimen-related with the CARRA Registry and substudies, from enrollment to processing. The session will also cover some of the substudies with which coordinators might not be as familiar as well as how to interpret site feedback reports and associated data.


Saturday, April 14, 2018

 

Coordinator/Small Centers Breakfast

Saturday, April 14 - 7:00 AM – 7:55 AM

 

Session Leaders

Jennifer Woo, [email protected]

Marsha Malloy, [email protected]

Peter Blier, [email protected]

Theresa Wampler-Muskardin, [email protected]g

 

Aims/Goals: At this, our first joint breakfast meeting, we will: 1) Recap the work done at the Thursday pre-meetings (for those who were unable to attend) and solicit feedback on proposed priorities for small center projects; and 2) As a group, begin collecting a set of "tips and tricks" for incorporating Registry activities into a fully packed, resource-limited day.


AMIGO Networking Breakfast

Saturday, April 14 - 7:00 AM – 7:55 AM

 

Session Leaders

Kristen Hayward, [email protected]

Aims/Goals: Join your fellow AMIGO’s for a mentorship networking breakfast! This session will provide an opportunity to reflect on the role of mentorship in your career and to make plans to optimize your PEER and traditional vertical mentorship relationships. Open to existing members of the AMIGO community as well as anyone interested in learning more about the program.


Concurrent Workgroup Sessions #3

Saturday, April 14 - 9:00 AM – 12:00 PM

 

JIA: Ultrasound Meeting #3 (I)

Saturday, April 14 - 9:00 AM – 12:00 PM

 

Session Leaders

Edward Oberle, [email protected]

Tracy Ting, [email protected]

Patricia Vega-Fernandez, [email protected]

Aims/Goals:The workgroup aims to develop standardized, methodical MSKUS protocols for image acquisition and scoring to help with clinical management as well as outcome measures in research. There is a manuscript in process regarding our success in developing a reliable knee scoring system (presented at ACR).  At the CARRA meeting this year, our goal is to continue this work now focusing on the ankle to generate an equally successful tool.  We also hope to support the pediatric MSK US community by providing an opportunity for workgroup members to discuss their interests and project proposals with a group of possible collaborators as we continue to identify knowledge gaps in the MSKUS literature.   


JIA: TMJ Interest Group (I)

Saturday, April 14 - 9:00 AM – 12:00 PM

 

Session Leaders

Marinka Twilt, [email protected]

Aims/Goals: Improving care for children with JIA and TMJ arthritis. Improve diagnosis, treatment and long-term outcome. The working group aims to develop strong relationships with the other TMJ research groups euroTMjoint and the JAW group. Members of this group will be invited to participate in activities of the other groups. This working group will focus on patient participation and potential proposals to continue the awareness of TMJ arthritis for patients and families and the dental community.


JIA: Outcomes (I)

Saturday, April 14 - 9:00 AM – 12:00 PM

 

Session Leaders

Esi Morgan, [email protected]

Jen Horonjeff, [email protected]

 

Aims/Goals: The outcome measures currently used for the assessment of medication effectiveness in JIA were developed without the input of patients/parents and are not relevant to all categories of JIA. The “Outcome Measures in Rheumatology” (OMERACT) JIA Core Set Working Group is an international collaboration of JIA patients, researchers, clinicians, and regulators formed to update the outcome measures to be used in JIA clinical trials. The Working Group conducted a literature review, and held online discussion boards and surveys with patients in the USA, Italy, and Australia. These studies resulted in 27 categories of interest to consider when measuring medication effectiveness . An international Delphi survey served to shorten this list to the most important categories, or “core set”, to evaluate the effect of treatments in JIA clinical trials. Come learn the results and see if you agree. What do you think of the proposed new core set domains?  The workgroup will gain CARRA community input that is vital to presentation of results and a consensus activity to be conducted at the OMERACT meeting in  Australia in May 2018.


SLE Dermatology (I)

Saturday, April 14 - 9:00 AM – 12:00 PM

 

Session Leaders

Kaveh Ardalan, [email protected]

Lisa Arkin, [email protected]

 

Aims/Goals: 1. To create collaborative opportunities for rheumatologists and dermatologists to investigate pediatric cutaneous lupus through robust collection of multi-centered data.  2. To characterize clinical phenotypes of pediatric patients with cutaneous lupus, better understand natural history/outcomes, impact on quality of life, and treatment response, ultimately facilitating creation of consensus treatment plans to reflect best clinical practice.  The first part of this year’s meeting will focus on a case-based approach to investigating rationale for treatment decisions in refractory cutaneous lupus and considering potential research collaborations relevant to novel therapy/drug discovery. The second half of the meeting will focus on evidence for sun protection recommendations in rheumatology patients, and investigating barriers/facilitators for high quality sun protective recommendations in clinic.


SVARD: CNO/CRMO (I)

Saturday, April 14 - 9:00 AM – 12:00 PM

 

Session Leaders

Dan Zhao, [email protected]  

Polly Ferguson, [email protected]  

Fatma Dedeoglu, [email protected]

Eve Wu, [email protected]

Melissa Oliver, [email protected]

Aims/Goals: To bring together the expertise and experience of pediatric rheumatologists within CARRA, pediatric radiologists  and international experts to improve/promote clinical and translational research in chronic nonbacterial osteomyelitis (CNO)  through consensus treatment plans (CTP), comparative effectiveness research and biomarker discovery.  To partner with families to improve awareness of CNO/CRMO and to develop patient reported outcome measurements


SVARD: PFAPA Work Group (I)

Saturday, April 14 - 9:00 AM – 12:00 PM

 

Session Leaders

Sivia Lapidus, [email protected]

Kalpana Manthiram, [email protected]

Fatma Dedeoglu, [email protected]rvard.edu  

Gil Amarilyo, [email protected]  

Deborah Rothman, [email protected]  

Julie Cherian, [email protected]

Aims/Goals: To promote expansion of diagnostics and therapeutics in PFAPA to improve quality of life in PFAPA, as well as tailored, evidence-based care to PFAPA patients through the combined expertise of CARRA pediatric rheumatologists, infectious disease specialists, immunologists in addition to otolaryngologists.   More specifically, to implement a pilot consensus treatment plan (CTP) for comparative effectiveness studies, launch a registry for PFAPA within the future CARRA autoinflammatory registry and create the infrastructure for future sample collection to improve clinical as well as translational research in PFAPA.  


JDM: Calcinosis in JDM

Saturday, April 14 - 9:00 AM – 12:00 PM

Session Leaders

Amir Orandi, [email protected]

Aims/Goals: Our aim is to improve the treatment and outcomes for patients with calcinosis associated with JDM. To accomplish this, we have worked to increase the understanding of calcinosis including epidemiology, risk factors, and morbidity while also evaluating current treatment and management approaches.  The group has done this with a comprehensive clinical review, international survey and will use these and other methods until sufficient support and consensus is available to develop a pilot CTP for the treatment of calcinosis in JDM.  Future studies will include analysis of the JDM section of the new registry and prospective studies for newly diagnosed patients.


JDM: Quality Measures Workgroup (I)

Saturday, April 14 - 9:00 AM – 12:00 PM

 

Session Leaders

Heather Tory, [email protected]

Aims/Goals: The overall aim of this group is to promote the highest quality and patient-centered care for patients with JDM. To this end, the specific goals of the group are to come to a consensus on a standardized set of relevant quality measures, with validated tools for assessment, for use in monitoring the quality of care delivered to patients with JDM, with a specific focus on including patient-reported outcomes and monitoring measures that patients find important.


Pain: Epidermal Nerve Fiber Density in Juvenile Fibromyalgia

Saturday, April 14 - 9:00 AM – 12:00 PM

 

Session Leaders

Alexis Boneparth, [email protected]

Aims/Goals: Discuss current status of pilot study to investigate phenomenon of decreased ENFD in juvenile fibromyalgia. Discuss plans and priorities for developing future research studies, investigating 1) ENFD and/or 2) clinical outcomes for patients with JFM.


CARRA Studies Part 2

Saturday, April 14 - 9:00 AM – 12:00 PM

 

Session Leaders

Jennifer Woo, [email protected]

Marsha Malloy, [email protected]

Anne Dennos, [email protected]

Aims/Goals: This session will be focused on how to improve enrollment in the CARRA Registry and CARRA substudies through study overviews, a panel discussion with high enrolling sites, and skill building workshops to increase efficiency and brush up those research coordinator skills.


TRTC Meeting

 

Saturday, April 14 - 12:05 PM – 12:50 PM

 

Session Leaders

Peter Nigrovic, [email protected]

Lauren Henderson, [email protected]

 

Aims/Goals:The Translational Research and Technology Committee (TRTC) seeks to help CARRA become an engine of translational research in the pediatric rheumatic diseases.  Our immediate goals include:  1) Establishment of a thriving CARRA-wide biorepository that ultimately increases biosample access to CARRA members who would like to conduct translational research on these specimens.  2) Development of standard operating procedures for biosample collection. 3) Assisting other CARRA disease specific work groups in developing translational arms to CTPs and related studies. 4) Identifying funding to conduct high level data analysis (genomics, transcriptomics, metabolomics, etc…) on biosamples collected through CARRA.    

-Report from TRTC Liaisons

-Update on CARRA Translational Initiative

-Wrap up


Concurrent Disease Group Research Committee Meetings

Saturday, April 14 - 4:15 PM – 6:00 PM

 

Aims/Goals: This session is an opportunity for committee members to hear about the progress and activities in other work groups. Given that committee members are likely unable to attend all meetings, and may have had conflicts preventing them from participating in workgroups in which they have a particular interest, this is a chance for leaders of each work group to summarize the activities and progress made, and to describe future plans. The main goal is to ensure that the full committee is aware and engaged in the ongoing work being done, and to facilitate broad participation. This is particularly important to ensure progress is made in the period of time between Annual Meetings.