News

CARRA Newsletter - July 2019 Issue 1

 

Study Confirms Urgent, Unmet Needs in Childhood-Onset Lupus

Experts identify lupus nephritis and neuropsychiatric disease among highest research priority areas in pediatric lupus.

CARRA and Lupus Foundation of America (LFA) conducted a first-of-its-kind, multidisciplinary research effort on childhood-onset lupus to assess research priorities for addressing this life-threatening disease. Results from the study, “Research Priorities in Childhood-Onset Lupus: Results of a Multidisciplinary Prioritization Exercise” published in Pediatric Rheumatology, conclude that the highest areas needing research in childhood lupus are nephritis, clinical trials, biomarkers, neuropsychiatric disease, and refractory skin disease.

In this Issue...

Lupus Study

CARRA Elections

Walk With Team CARRA

Registry Enrollment Update

LFA Awards: Call for Nominations

Upcoming Events

Arthritis Foundation Updates

The study also revealed a strong need for multidisciplinary collaboration moving forward. When asked which sub-specialties in addition to rheumatology should collaborate in childhood lupus research, 92% suggested collaborating with nephrologists, 73% with dermatologists, and 68%
with mental health specialists.

 Children with lupus have more pervasive and life-threatening organ involvement compared to adults with lupus, and an estimated 6,000 US children and adolescents are currently living with the disease which has few treatment options and no cure. Over 250 members of CARRA, Midwestern Pediatric Nephrology Consortium (MWPNC) and Pediatric Dermatology Research Alliance (PeDRA) Connective Tissue Disease Group participated in the study.

Thank you to CARRA members Stacy Ardoin, Aimee Hersh, Kaveh Ardalan, Lisa Arkin, Andrea Knight, Tamar Rubinstein, Natasha Ruth, and Scott Wenderfer for leading CARRA’s efforts and working with the Lupus Foundation on this very important study!

Inflammation of the Kidneys

Nephritis (inflammation of the kidneys) was identified as the number one research priority. Up to 80% of children with lupus develop nephritis, which increases risk of kidney failure, cardiovascular disease and death. Lupus nephritis (LN) requires prolonged therapy, often with toxic medications, and complex treatment plans. Although there have been many advances over the last several decades and many people with lupus can enjoy good health and normal activities, LN is still a driving factor in increased complications, hospitalizations and mortality rates, especially in children versus adults with lupus. 

Cognitive Impairment

Lupus commonly affects the brain in children and can cause strokes as well as severely impair the ability to think through tasks. Neuropsychiatric disease (involvement of the nervous system) was also identified as a top challenge for clinicians and researchers treating children with lupus. Neuropsychiatric complications can have substantial negative impact on cognitive development, educational and vocational outcomes in children and adolescents with lupus. 

Up to 65% of children with lupus develop neuropsychiatric involvement over the course of their disease, with up to 85% developing neuropsychiatric involvement in the first two years from diagnosis.1 The burden, ranging from missed school or even school failure to major challenges with treatment adherence, can have an enormous impact on a child’s psychological development and  quality of life. Today, the treatment of childhood lupus is generally extrapolated from adult clinical trials data and optimal drug dosing, duration of therapy and outcomes measurement may differ for pediatric patients. 

Specific to nephritis and neuropsychiatric disease, important focus areas across all lupus experts were determining best treatments, biomarkers/pathophysiology, drug discovery/novel treatments, understanding long term outcomes, and refining provider reported quality measures. Of note, understanding long term outcomes was ranked highly important across every research area. 

“This study underscores the urgency for childhood lupus research. We are committed to investing in this area, and our partnership with CARRA as leaders in this field will bolster our progress as we work together to elevate childhood lupus research,” said Stevan Gibson, President and CEO, Lupus Foundation of America. “The findings from the study offer a roadmap to guide future research endeavors, so that the scope and devastation of lupus in children aligns with received funding.”

“This is the first published research prioritization effort among experts in childhood lupus, which highlights the lack of evidence that exists specific to this disease. There are important differences between adults and children, and significant knowledge gaps limit our understanding of the best treatments and long term outcomes in children with lupus,” said Aimee Hersh, Chair of the CARRA Systemic Lupus Erythematosus Committee. “This multidisciplinary approach to identifying research priorities emphasizes the need for collaboration for childhood lupus care and research. The results from this exercise will help set a research agenda moving forward.”

The study, Research Priorities in Childhood-Onset Lupus: Results of a Multidisciplinary Prioritization Exercise, appears in Pediatric Rheumatology.

  1. Systemic Lupus Erythematosus in Children and Adolescents, Pediatric Clinics of North America, Volume 59, Issue 2, April 2012

Congratulations to Our Recently Elected Committee Members!

Steering Committee Member: Cross Cutting Committee Chair Finance Committee Member Finance Committee Member
Tova Ronis, MDCM
Children’s National Health System

 
Stacy Ardoin, MD, MS
Nationwide Children’s Hospital/Columbus Children’s

 
John Bohnsack, MD
University of Utah Health Sciences Center
(re-elected for 2nd term)

CARRA Cross Cutting Committee Vice Chair Ballots Coming Soon

Ballots for the election of the Cross Cutting Committee Vice Chair will be distributed on July 8.

As a reminder, CARRA voting members (Pediatric Rheumatologist Members, Sponsored Voting Members, and Emeritus Members) must participate in elections to remain a CARRA member in good standing.  You will have the option to abstain from voting for each position, should you not be inclined to select one of the named candidates.

Your participation (but not your voting selections) will be recorded in your membership record. Our organization will be optimally effective and provide the most value to our members if you participate in elections.

Ballots will be distributed via Survey Monkey to eligible voting members. If you do not receive a ballot, please contact Brian Mondragon Jones ([email protected]).


Walk to CURE Arthritis: TEAM CARRA!

“Coming together is a beginning. Keeping together is progress. Working together is success." --Henry Ford

As many of you are aware, CARRA has grown exponentially the last few years- primarily due to our partnership with the Arthritis Foundation.  The CARRA Registry has enrolled over 8,600 children and young adults, the CARRA-Arthritis Foundation grant program has funded over 70 CARRA member projects, and the 2019 Annual Scientific Meeting was attended by a record number of patients/families.  Much of this was made possible because of the Arthritis Foundation’s support!

CARRA has formed a National Team for the Arthritis Foundation’s Walk to Cure Arthritis and Jingle Bell Run events to demonstrate our enthusiastic support.  Many CARRA members across the country have formed teams in their local areas and linked them to our CARRA National Team.  To date we have raised over $35,000--click here to see all of our CARRA local teams and top fundraisers. Thank you all for your efforts! 

For those have been unable to create or contribute to a local team, please consider making a tax-deductible donation to the Arthritis Foundation via Team CARRA by clicking the button below. We appreciate all donations—large and small!

I hope you will join me in working together with our partner, the Arthritis Foundation, to prevent, treat, and cure arthritis and other pediatric rheumatic diseases!

Vincent Del Gaizo
Director of Strategic Partnerships and Patient Engagement
CARRA

Thank you to everyone who participated recently at the Boston Walk to Cure Arthritis Event!

 

 Click here to view Walk photo from our local CARRA teams.
If you have photos to add to our album, please email them to [email protected].

Thank you for your support of CARRA and the Arthritis Foundation!


Registry Enrollment Update (as of 6/21/19)

As of last week, CARRA has 8361 patients enrolled in the CARRA Registry, including:

  • 7740 patients with JIA
  • 535 patients with SLE & related conditions
  • 96 patients with JDM

We have collected 240 biosamples, and have enrolled 63 of 100 patients in the FROST study. Enrollment for STOP-JIA and PEPR are complete!

Thank you to all of our CARRA Registry sites for all of  hard work!

 

Lupus Biosample Collection has Begun!

CARRA is excited to announce that we are now collecting biosamples on eligible lupus patients.

Eligibility: Newly enrolled SLE/related conditions patients who are also:

  • Enrolled at a CARRA Registry site with centrifuging capabilities
  • Enrolled within 6 months of diagnosis
  • Untreated (no prior steroids/biologic or non-biologic DMARDs; prior NSAID use is ok)

Collection Time Points: Baseline (+ 1 month); 6 months (+/- 2 months); 12 months (+/- 2 months).

 

Contact DCRI with any questions about lupus biosample collection at [email protected]


Lupus Foundation Awards—Call for Nominations

Each year, the Lupus Foundation of America (LFA) recognizes investigators who made and continue to make incredible contributions to the advancement of lupus research and treatment. The LFA is now accepting nominations for the following awards:

EVELYN V. HESS, MD, MACP, MACR AWARD

The Evelyn V. Hess, MD, MACP, MACR Award, which is in its 14th year, is given to a clinical or basic researcher whose body of work has significantly advanced the understanding of the pathophysiology, etiology, epidemiology, diagnosis, or treatment of lupus. This award was created to honor Dr. Hess' outstanding contributions to lupus research over the course of her long career.

MARY BETTY STEVENS, MD, FACP, FACR YOUNG INVESTIGATOR PRIZE 

Celebrating its 10th year, the Mary Betty Stevens, MD, FACP, FACR Young Investigator Prize is given in recognition of the exceptional achievements of an investigator in the early part of his or her career in lupus research. This award was created to memorialize Dr. Stevens who made exceptional contributions to lupus research starting from early on in her career.

Click here for more information on nomination guidelines and deadlines

QUESTIONS? Please email Ashley Marion at [email protected]

DEADLINE FOR NOMINATIONS: AUGUST 16, 2019


Important Upcoming Dates


Arthritis Foundation Updates

 

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 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.

JA Camps

Registration for Arthritis Foundation fall family camp and teen retreat programs is still open! View our JA Camps website to browse our camps and register today! If you have additional questions, please contact your nearest Arthritis Foundation office. www.arthritis.org/JACamps