CARRA Newsletter - December 2018 Issue 1
The FIRST EVER CARRA Registry Retreat will be January 28, 2019! This will be a unique one-day event for principal investigators, sub-investigators and coordinators from every CARRA Registry site. The purpose of the retreat is to facilitate and improve the experience of participating in the Registry by actively engaging with one another through small groups, panel discussions, brainstorming, problem-solving, role-playing and training.
In this Issue...
The success of the CARRA Registry is very much dependent on everyone’s engagement, so we strongly encourage the participation of every Registry site in the retreat. Each site may send up to 3 attendees to this event: the Registry site PI, one site coordinator, and one sub-investigator. CARRA will be sending a separate RSVP invitation and hotel reservation link to Registry site personnel in the coming weeks. Please keep an eye out for this email.
The CARRA Registry Retreat will be held January 28, 2019 in Orlando, Florida at the Renaissance Orlando Airport Hotel. Attendees will fly in Sunday afternoon of January 27 for a CARRA-sponsored reception in the evening, then attend the one-day retreat on January 28 and fly home that evening. More details to follow. You may contact CARRA with any questions at [email protected].
Please be sure to mark your calendars! We hope to see you there!
This holiday season, CARRA is participating in the Arthritis Foundation’s Jingle Bell Run fundraising events! These family-friendly, fun and festive 5Ks bring people together while raising funds to help our partner, the Arthritis Foundation!
CARRA’s Jingle Bell Run goal this year is to raise at least $10,000 for the Arthritis Foundation and here’s how you can help!
- Donate to Team CARRA! CARRA is registered for Atlanta’s Jingle Bell Run event on December 15th and we will be raising money all month long. If you don’t have a team and/or want to provide a donation directly to CARRA’s team, visit Team CARRA’s Jingle Bell Run site here and click on the “SUPPORT US” button to make a tax deductible donation. Be sure to share it with your friends and family, too!
- If you are already on a Jingle Bell Run team, you can link your team to CARRA’s National Team. Just email Kelly ([email protected]) with your team’s name and event location and she will take care of it for you. All funds that you raise with/for your team stay with your local team and they will get counted towards CARRA’s goal, too! Visit CARRA’s team page and see CARRA’s fundraising progress!
- There’s still time to start a new team in your local area! Click here to see if there is an event near you. If you want to start a new team and link to CARRA’s team, contact Kelly and let her know!
The Arthritis Foundation has been a steadfast supporter of CARRA since its inception and is a major partner in support of our research to improve outcomes for children with rheumatic diseases.
Thank you for your support of CARRA and the Arthritis Foundation!
The increasing recognition of autoimmune brain diseases (ABD) in pediatric populations has prompted a new level of investigation and interest in children presenting with neuropsychiatric manifestations. The dramatic presentations and potential for recovery has grabbed the attention of many families and the media. Articles in The Atlantic (“When the Body Attacks The Minds”) and The New York Times (“He Got Schizophrenia, He Got Cancer. And Then He Got Cured”), books such as Brain on Fire: My Month of Madness, and news specials such as those featured on CNN, have further raised awareness leading to a rise in children presenting for evaluation. Given the overlapping clinical presentation and treatments of autoimmune brain diseases and rheumatic conditions, rheumatologists are increasingly involved with both the initial work up and long-term management of these children.
Over the last 10 years, there has been rapid growth in pathologic antibody identification and an evolving understanding of the spectrum of disease and treatment responses. However, many questions remain. Who should have a work up for an autoimmune brain disease? What work up is appropriate and what is required to make a diagnosis? When should one initiate treatment and which subspecialist should manage inpatient and ambulatory care? While treatment recommendations in the literature include first line therapy with IVIG, steroids and plasma exchange, there are no clear dosing regimens or guidelines on which of these treatments or combinations of treatments to use, or when to escalate to second line therapy.
The goal of the CARRA’s Autoimmune Encephalitis work group is to start answering these questions through several research projects. We recognize in order to proceed with research studies in this population, we need defined diagnostic criteria, measures of disease activity, and outcome measures before we can start developing standardized treatment plans. Given the inherent need for multidisciplinary care in these children, much of the group’s initial work has focused on developing a network of rheumatologists, neurologists, psychiatrists, and neuropsychologists to ensure consideration of the various aspects of the diagnostic workup and treatment of ABD patients. We look forward to the publication of pediatric classification criteria for autoimmune encephalitis in 2019. The CARRA workgroup plans to evaluate these criteria against pediatric patients previously diagnosed with AE, similar to the work of the Sjogren’s workgroup’s evaluation of the newly proposed Sjogren’s criteria. Current projects include an outline to identify which children require an evaluation for possible inflammatory brain disease in the first place, and an outline of the work up to initiate. The proposed diagnostic criteria for autoimmune encephalitis require results from MRIs, EEGs and CSF studies. Our work has identified a critical point of uncertainty for clinicians around deciding which children should even have a workup initiated, especially when children present early in the course or with predominate psychiatric symptoms. This algorithm was developed in collaboration with neurologists and psychiatrists.
Work on defining disease activity and outcome measures, as well as treatment protocols, is ongoing as the workgroup moves toward the goal of developing Consensus Treatment Plans (CTPs). While not all rheumatologists may include ABD patients in their practice, the workgroup aims to reduce the uncertainty around these conditions and decrease the variability in their treatment regimens through a standard approach to the diagnosis and treatment. Through research, greater multi-disciplinary collaboration, and family-centered care, the Autoimmune Encephalitis Workgroup aims to improve patient outcomes, as well as family and provider satisfaction.
CARRA’s Autoimmune Encephalitis Workgroup formed in 2015 and is led by Heather Van Mater, Susanne Benseler, and Eyal Muscal. The workgroup’s next meeting will be at CARRA’s 2019 Annual Meeting in Louisville, KY from April 10-14. For more information or to get involved with CARRA’s Autoimmune Encephalitis Workgroup, contact Heather Van Mater.
Heather Van Mater
Call for Abstracts
CARRA invites you to submit an abstract to the 2019 Annual Meeting! The deadline to submit abstracts is January 8, 2019 and the abstract submission site will be opening soon. Contact CARRA staff with any questions by emailing [email protected] or by calling 414-918-9822 (ask to speak with the CARRA Research Administrator, Portlynne Joseph).
The 2019 CARRA Annual Scientific Meeting will take place in Louisville, Kentucky from April 10-14, 2019. For the latest information about the CARRA Annual Scientific Meeting, visit our website
2019 Pediatric Residents Program
Application Deadline: January 8, 2019
To address the shortage of pediatric rheumatologists and to expose pediatric residents to the field of rheumatology, CARRA has created the Pediatric Residents Program. CARRA is providing funds to support pediatric residents’ attendance at the CARRA 2019 Annual Scientific Meeting at the Marriott Louisville Downtown in Louisville, KY, from April 10-14, 2019. Awardees will be teamed with a CARRA member from another state/institution who will help guide their experience at the meeting.
For any questions, please contact CARRA at [email protected] 414-918-9822.
APPLY NOW – CARRA Registry Intern – RFA 2019
Applications due December 13, 2018
Term: July 1, 2019 – June 30, 2020
CARRA is now accepting applications for up to two CARRA Registry Intern positions. The CARRA Registry Internship will require 25% effort for one year. The internship may be eligible for a one year renewal, depending on availability of funds and/or intern productivity. This opportunity is supported through funds received via our partnership with the Arthritis Foundation.
The CARRA Registry supports data collection on patients with pediatric-onset rheumatic diseases. This internship is designed to immerse the applicant in the operational, leadership and scientific aspects of CARRA’s multicenter observational registry which will be used to answer pressing questions about pediatric rheumatic diseases, including drug safety. This is a unique opportunity for the intern to interact intensively with the CARRA Registry leadership team; to learn skills and gain knowledge that will enrich subsequent pediatric rheumatology research and practice.
New Deadline for CARRA-Arthritis Foundation Fellow & Small Grants
Applications due February 15, 2019
Please be advised that the next round of CARRA-Arthritis Foundation Fellow and Small grants have a new deadline of Friday, February 15, 2019. Applications must be submitted no later than 11:59 PM PST. The CARRA online submission system will open for applications in December 2018. Notifications will be sent out in June of 2019. The project start date for both grants will be July 1, 2019.
CARRA offers members various funding and internship opportunities to further research that leverages the CARRA network and positively impacts the pediatric rheumatology scientific community and advances the CARRA mission. Additional information for the different grant opportunities, including the application instructions and templates are available on our website. These opportunities are made possible through the generous support of the Arthritis Foundation.
Email [email protected] with any questions related to CARRA-Arthritis Foundation Grants.
Nomination Deadline: December 20
Positions: JIA Chair, Pain Chair, and RCN Chair
The CARRA Elections Committee seeks nominations for the following CARRA leadership positions:
JIA Chair, JIA Vice Chair, Pain Chair, RCN Chair, and RCN Vice Chair
The elections for the Steering Committee Chair open positions will be held prior to the elections for the Steering Committee Vice Chair open positions. To view the full election timeline and Scope of Work for each position, please visit the Elections page on the CARRA website.
- December 13: 2019 CARRA Registry Intern Applications Due
- December 20: Election Nominations Due
- January 8, 2019: CARRA Annual Meeting Abstracts Due
- January 8, 2019: Pediatric Residents Program Applications Due
- January 27-28, 2019: CARRA Registry Retreat, Orlando, FL
- February 1, 2019: Membership Renewal Due Date
- February 15, 2019: CARRA-Arthritis Foundation Fellow and Small Grant Applications Due
- April 10-14, 2019: 2019 CARRA Annual Scientific Meeting, Louisville, KY
Arthritis Foundation Juvenile Arthritis Conferences
Save the Dates - Arthritis Foundation announces 2019 National Juvenile Arthritis Conference locations. July 18 - 21 in Houston, TX and August 1 - 4 in Minneapolis, MN. Save the Date cards will be delivered to clinics the end of 2018.
iPeer2Peer Mentorship Program
The Arthritis Foundation offers the iPeer2Peer mentorship program in partnership with iOUCH (improving Outcomes in Child Health through Technology) research team at the Hospital for Sick Children in Ontario, Canada. The goal of this program is to help and support teens (13 - 17) with juvenile arthritis (JA) or related childhood rheumatic diseases by connecting them with a trained young adult mentor who shares similar experiences growing up with JA or related childhood rheumatic diseases. Marketing materials available for clinics through Arthritis Foundation local offices. Continuous mentee recruitment, online application for parents and teens for more details visit www.arthritis.org/ipeer2peer.