Nephritis Identified as High Research Priority Area For Childhood-Onset LupusNephritis Identified as High Research Priority Area For Childhood-Onset Lupus https://pediatricsnationwide.org/wp-content/themes/corpus/images/empty/thumbnail.jpg 150 150 Lauren Dembeck Lauren Dembeck https://pediatricsnationwide.org/wp-content/uploads/2021/03/Dembeck_headshot.gif
- December 30, 2019
- Lauren Dembeck
In an effort to establish research priorities in childhood-onset systemic erythematous lupus (cSLE), researchers at Nationwide Children’s Hospital partnered with the Lupus Foundation of America (LFA) and Childhood Arthritis and Rheumatology Research Alliance (CARRA). Their findings are recently published in Pediatric Rheumatology.
According to the results of their multidisciplinary prioritization survey of leading rheumatology, dermatology and nephrology clinicians and investigators – nephritis, clinical trials and biomarkers were indicated as the top three highest research priorities in cSLE.
“The Lupus Foundation of America identified that cSLE is more severe than adult lupus, and we have a significant shortage of providers,” says first author Stacy Ardoin, MD, who is a pediatric rheumatologist at Nationwide Children’s. “Partnering with organizations representing multiple disciplines allowed us to look across the specialty to identify the unmet clinical needs and where we need to focus our research efforts to improve outcomes.”
Members of LFA and CARRA’s SLE Committee established a list of 17 tiered cSLE research domains for respondents to categorize into high, medium, or low priority areas. Then, respondents ranked research topics within the domains that they indicated as high priority. The web-based survey was distributed to members of CARRA, Pediatric Dermatology Research Alliance (PeDRA) Connective Tissue Disease group and Midwestern Pediatric Nephrology Consortium (MWPNC), which was recently called Pediatric Nephrology Research Consortium.
Out of 256 responders, nephritis was selected most often as a high priority area, followed by clinical trials, biomarkers, neuropsychiatric disease and refractory skin disease, in that order. Members from all five organizations consistently ranked nephritis, clinical trials and biomarkers in the top five high priority areas.
Respondents were also asked which subspecialties aside from rheumatologist should collaborate in cSLE research. In line with the high priority area results, a majority of respondents suggest nephrologists (92%) followed by dermatologists (73%) and mental health specialists (68%).
“The severity and prognosis of cSLE often correlates with the severity of kidney disease,” says Mahmoud Kallash, MD, pediatric nephrologist at Nationwide Children’s “We have been treating pediatric lupus nephritis for many years using mostly the adult data and guidelines, knowing that pediatric patients tend to have more severe disease than adults.”
Members of all five organizations also agreed upon important focus areas within each research domain, ranking determining best treatments as top priority followed by biomarkers/pathophysiology, drug discovery/novel treatments, understanding long term outcomes, and refining provider reported quality measures.
“In most cases, we don’t have dedicated studies for management of pediatric Lupus nephritis,” says Dr. Kallash. “We are currently in the process of conducting multicenter, prospective and retrospective studies to define treatment strategies and outcome in pediatric patients, but the results aren’t ready yet.”
Both Dr. Ardoin, who also provides care to adult with lupus at The Ohio State University Rheumatology Clinic and Lupus Clinic, and Dr. Kallash emphasize the importance of a multidisciplinary team in cSLE management.
“A multidisciplinary team working together can best help the patient and make sure the kidney disease and the lupus are well controlled,” says Dr. Kallash.
Ardoin, SP, Daly R, Merzoug L, Tse K, Ardalan K, Arkin L, Andrea Knight A, Rubinstein T, Ruth N, Wenderfer SE, Hersh AO, and on behalf of the Childhood Arthritis and Rheumatology Research Alliance and Lupus Foundation of America. Research priorities in childhood-onset lupus: results of a multidisciplinary prioritization exercise. Pediatric Rheumatology. 2019 Jul 1;17:32.
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