CARRA Newsletter-January 2018 Issue 1
Members of the Pediatric Nephrology and Rheumatology Collaborative Group (a subgroup of the CARRA Lupus Work Group) recently published the results of their study "Approach to Membranous Lupus Nephritis: A Survey of Pediatric Nephrologists and Pediatric Rheumatologists." The survey was distributed to both members of CARRA and the American Society of Pediatric Nephrology (ASPN). 117 Respondents completed the survey (60 pediatric nephrologists and 57 pediatric rheumatologists). Most pediatric rheumatologists and pediatric nephrologists agreed that systemic steroids treatment should be included the initial treatment of pure MLN, regardless of the degree of proteinuria. However, nephrologists used steroids (60% vs 93%) and non-steroid immunosuppression (53% vs 87%) less often than did rheumatologists for MLN without nephrotic syndrome. The authors note that the results of their study highlight the empirical nature of treatment decisions for pure MLN, and the need for future comparative effectiveness and long term outcome studies.
"The goal is to engage each of our specialties for the benefit of the research that is done within CARRA and within the MWPNC. The survey study by Boneparth et al. illustrates well the power of bringing pediatric nephrologists and pediatric rheumatologists together to determine practice patterns for management of complex diseases in the real world." - Scott Wenderfer, Co-Chair, CARRA SLE Nephritis group, pediatric nephrologist from Baylor College of Medicine.
In this Issue...
Application Deadline: January 27
CARRA is pleased to announce that through a partnership with Brigham and Women’s Hospital and Harvard Medical School we are able to select one CARRA member to participate in the VERITY/Brigham Course in Rheumatology Clinical Research and receive travel support from CARRA. The course will be held May 7-12, 2018 in Boston, MA at Brigham and Women’s Hospital. This travel award provides up to $2500 to cover expenses to attend the 6 day course.
Nomination deadline: January 19
Positions: JDM Chair, SLE Chair, Small Centers Chair, Finance Chair
The CARRA Elections Committee seeks nominations for the following CARRA leadership positions:
Finance Chair, Early Investigator Vice Chair, JDM Chair, JDM Vice Chair, Pain Vice Chair, SLE Chair, SLE Vice Chair, Small Centers Chair.
The elections for the Executive Committee and Steering Committee Chair open positions will be held prior to the elections for the Steering Committee Vice Chair open positions.
Renewal Due Date: February 1, 2018
Renew your CARRA membership by reviewing/updating your membership record and by paying any applicable dues by February 1, 2018 to avoid late fees. You can renew your membership through a link in an email that you should have received. Please contact Nicole Dahms ([email protected]) if you did not receive this notification. See the CARRA 2018 Membership Categories and Dues for full details.
Important Annual Meeting Announcements
Abstract Deadline: January 22, 2018
Abstract submission is now open for the 2018 Annual Scientific Meeting. Abstracts will be peer-reviewed and selected for either oral or poster presentation.
All recipients of CARRA-AF grants (small grants, large grants, and publications support grants) are required to submit an abstract and present a poster at the 2018 detailing results and/or current status of their project.
All abstracts will be published in an online supplement to Pediatric Rheumatology, which will be available in May of 2018. In order to facilitate the publication process, we require all abstracts to follow the publisher's abstract guidelines. The abstract guidelines and sample abstract are provided here:
Application Deadline: January 26, 2018
To address the shortage of pediatric rheumatologists and to expose pediatric residents to the field of rheumatology, CARRA has created the Pediatric Residents Program. The goals of the CARRA Pediatric Residents Program are to:
- Provide pediatric residents with access to the broad pediatric rheumatology community through participation in CARRA's Annual Scientific Meeting.
- Encourage interested pediatric residents to consider rheumatology as a subspecialty, thus improve patient access to pediatric rheumatologists.
To help achieve these goals, CARRA is providing funds to support pediatric residents’ attendance at the Annual CARRA Scientific Meeting at the Hyatt Regency Denver in Denver, CO from April 12-15, 2018. Awardees will be teamed with a CARRA member from another state/institution who will help guide their experience at the meeting.
Important 12 Month Visits (Primary Endpoint Visit) are due for many STOP-JIA Patients!
We are excited that we now have more than 1/3 of all enrolled subjects due for 12 month follow-up! These 12 month STOP-JIA visits are extremely important, because the primary endpoints for STOP are assessed at that visit. If you are a STOP-JIA site, please make sure the 12 month visit data are entered into RAVE when these subjects come to clinic.
While all data points (including PRO data)are important for STOP, visit data may still be entered (and considered complete) even if PROs were not collected.
- The Registry team at University of Utah Hospitals and Clinics for enrolling their first PEPR patient!
Enrollment Update (as of 1/12/18)
The Division of Rheumatology at the Hospital for Sick Children will be hosting their inaugural Advances in Childhood Rheumatic Diseases, an International Symposium, which will take place on Sunday, April 29th, 2018 at the Westin Harbour Castle in Toronto.
This year’s theme is very special as we celebrate the retirement of Dr. Earl Silverman, for whom we will dedicate the day and celebration dinner. This full-day symposium will feature both international and local leading experts who will speak on the diagnosis, treatment and current research endeavors relating to rheumatic diseases. The audience will consist of both national and international rheumatologists (adult and pediatric) as well as pediatricians, nephrologists and internists.
For more information on the itinerary and registration, please visit: http://www.cvent.com/d/w5ql19
iPeer2Peer Mentorship Program
In 2017, the Arthritis Foundation piloted a new peer mentorship program called iPeer2Peer 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 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. 42 parents and 20 teens from across the United States applied to be a part of the pilot program and 12 Mentor (young adults) and Mentee (teens) matches were officially made. Recruitment efforts for 2018 are in full swing with plans to train additional young adults as iPeer2Peer Mentors with the ability to serve more teens throughout the year. More details on the Arthritis Foundation, iPeer2Peer Program here: www.arthritis.org/ipeer2peer
Champion of Yes
The Arthritis Foundation is the Champion of Yes. We exist to conquer arthritis and other childhood rheumatic diseases. We’ve been meeting the unique and urgent needs of families for nearly 70 years. Working closely with such great research partners as the Childhood Arthritis and Rheumatology Research Alliance (CARRA) (www.carragroup.org), we’re investing millions of dollars in outreach and collaborative research that advances prevention, care and a cure for kids and teens with rheumatic diseases. Our tools and resources help more children say Yes to making life better.