July 5, 2019
A study published last week in Pediatric Rheumatology identified the top priorities for research into lupus in children.
The survey asked pediatric rheumatologists, dermatologists and nephrologists with expertise in lupus to categorize areas of research into high, medium or low priority. The survey was given to pediatric rheumatologists, dermatologists and nephrologists with expertise in lupus who belong to Childhood Arthritis and Rheumatology Research Alliance (CARRA), the Midwestern Pediatric Nephrology Consortium and/or the Pediatric Dermatology Research Alliance Connective Tissue Disease Group.
Nephritis, clinical trials, biomarkers, neuropsychiatric disease and refractory skin disease were ranked as highest priority. Nephritis, clinical trials and biomarkers were ranked in the top five greatest priorities by all groups. Agreement was also seen as to the importance of focusing on determining best treatments, biomarkers/pathophysiology, drug discovery/novel treatments, understanding long term outcomes, and refining provider reported quality measures.
Investigators concluded: “There is a strong need for multidisciplinary collaboration moving forward, which was indicated as highly important among stakeholders involved in the survey. These survey results should be used as a roadmap to guide funding and specific research programs in childhood lupus to address urgent, unmet needs among this population.”
The goal of the study was “to explore and better understand clinicians’ and investigators’ main research priorities for children with lupus which should guide future research decisions and funding mechanisms.”
Investigators involved in the study included Dr. Andrea Knight whose work funded by the Lupus Research Alliance confirms that lupus is a leading cause of death among young women and girls. The LRA recently received a grant from the Hearst Foundations to further support Drs. Knight and Vipin Kumar in their study of lupus in children. The LRA is also currently funding work by Dr. Peter Nigrovic, a member of CARRA and the Chair of CARRA’s Translational Research and Technology Committee (TRTC). The TRTC is overseeing and managing a prospective, longitudinal lupus biorepository, which will also oversee studies on the samples/data.
The survey was designed by the Childhood Arthritis and Rheumatology Research Alliance and the Lupus Foundation of America.
