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Retrospective Cohort Study
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World J Clin Pediatr. Sep 9, 2026; 15(3): 119428
Published online Sep 9, 2026. doi: 10.5409/wjcp.119428
Clinical and laboratory manifestations and treatment of children with TNFRSF1A gene variants
Mikhail M Kostik, Dmitry S Demyanov, Ilya S Zhanin, Aleksandr A Pushkov, Kirill V Savostyanov, Narvik A Dostiev, Anastasia A Makunc, Maria Y Kokina, Natalya M Kondratyeva, Maria S Botova, Irina T Tsulukiya, Tatyana Y Kriulina, Ivan A Kriulin, Elizaveta A Krekhova, Kristina V Chibisova, Anna N Fetisova, Aleksandra M Chomakhidze, Ksenia B Isaeva, Tatyana M Dvoryakovskaya, Meiri Sh Shingarova, Ekaterina I Alexeeva
Ekaterina I Alexeeva, Meiri Sh Shingarova, Tatyana M Dvoryakovskaya, Ksenia B Isaeva, Aleksandra M Chomakhidze, Anna N Fetisova, Kristina V Chibisova, Elizaveta A Krekhova, Ivan A Kriulin, Tatyana Y Kriulina, Irina T Tsulukiya, Maria S Botova, Natalya M Kondratyeva, Maria Y Kokina, Anastasia A Makunc, Narvik A Dostiev, Department of Pediatric Rheumatology, National Medical Research Center of Children’s Health, Moscow 119991, Moskva, Russia
Ekaterina I Alexeeva, Tatyana M Dvoryakovskaya, Department of Pediatrics and Pediatric Rheumatology, Clinical Institute of Children’s Health Named After N.F. Filatov of the I.M. Sechenov First Moscow State Medical University (Sechenov University), Moscow 119435, Moskva, Russia
Kirill V Savostyanov, Aleksandr A Pushkov, Ilya S Zhanin, Dmitry S Demyanov, Department of Medical Genetics of the Medical and Genetic Center, National Medical Research Center of Children’s Health, Moscow 119991, Moskva, Russia
Mikhail M Kostik, Hospital Pediatry, Saint Petersburg State Pediatric Medical University, Saint Petersburg 194100, Sankt-Peterburg, Russia
Author contributions: Alexeeva EI, Shingarova MS, and Kostik MM contributed to conceptualization, writing review, editing, writing original draft, funding, supervision, and project administration; Shingarova MS and Kriulina TY contributed to statistical analysis; Shingarova MS, Isaeva KB, Chomakhidze AM, Fetisova AN, Chibisova KV, Krekhova EA, Kriulin IA, Kriulina TY, Tsulukiya IT, Botova MS, Kondrateva NM, Kokina MY, Makunc AA and Dostiev NA contributed to investigation; Savostyanov KV, Pushkov AA, Zhanin IS, Demyanov DS contributed to genetic research and interpretation of the results; Alexeeva EI and Dvoryakovskaya TM contributed to validation; all authors have read and agreed to the published version of the manuscript.
Institutional review board statement: The Ethics Committee of the I.M. Sechenov First Moscow State Medical University (Sechenov University) approved the study protocol (No. 12-25, 22 May 2025).
Informed consent statement: Written informed consent was obtained from all patients or their legal guardians (for patients aged < 15 years).
Conflict-of-interest statement: The authors declare no conflicts of interest.
STROBE statement: The authors have read the STROBE Statement—checklist of items, and the manuscript was prepared and revised according to the STROBE Statement—checklist of items.
Data sharing statement: The datasets generated during and/or analyzed during the current study are available from the corresponding author upon reasonable request.
Corresponding author: Mikhail M Kostik, MD, PhD, Professor, Hospital Pediatry, Saint Petersburg State Pediatric Medical University, Lytovskaya 2, Saint Petersburg 194100, Sankt-Peterburg, Russia. kost-mikhail@yandex.ru
Received: January 27, 2026
Revised: February 7, 2026
Accepted: March 11, 2026
Published online: September 9, 2026
Processing time: 186 Days and 12.3 Hours
Abstract
BACKGROUND

The TNFRSF1A gene encodes TNFR1, which regulates inflammation and apoptosis. Variants in this gene present with an autoinflammatory phenotype and are linked to tumor necrosis factor receptor associated periodic syndrome (TRAPS), an orphan monogenic autoinflammatory disease (AID) that can mimic systemic juvenile idiopathic arthritis (sJIA) and other rheumatic diseases. Despite known mechanisms and classification criteria, diagnosing and choosing therapy for patients with TNFRSF1A variants remains challenging. Assessing phenotypic characteristics and considering alternative therapies for these patients is important.

AIM

To evaluate the clinical and laboratory features of sJIA associated with the TNFRSF1A gene and treatment outcomes.

METHODS

A single-center, retrospective, cross-sectional cohort study with longitudinal follow-up was performed. A total of 66 patients with fever and a referral diagnosis of sJIA were included: 33 (50%) had TNFRSF1A gene variants identified by molecular genetic testing, and 33 (50%) had no TNFRSF1A or other autoinflammatory gene variants. Demographic, clinical, laboratory, and treatment data were collected before and after verification of AID, and again at 3, 6, and 12 months.

RESULTS

Molecular genetic testing identified several TNFRSF1A variants. Of 33 patients, 4 (12%) had likely pathogenic variants, 1 (3%) had a pathogenic variant, and 3 (9.1%) had variants of uncertain significance; all were heterozygous. The most common, identified in 27 (82%), was a variant of uncertain significance (c.362G>A, p.Arg121Gln) with incomplete penetrance. These patients had paroxysmal (48.5%) or continuous fever (48.5%), rash (66.7%), joint syndrome (78.8%), abdominal pain (33.3%), gastrointestinal symptoms (27.2%), eye involvement (24.2%), chest pain (12.1%), hearing loss (9.1%), periorbital edema (9.1%), arrested development (6.1%), aseptic meningitis (3%), hydrocephalus (3%), and amyloidosis (3%). Endoscopic signs of intestinal damage were found in 20 patients (60.6%): 11 showed upper gastrointestinal tract issues; 9 had intestinal pathology. All patients with TNFRSF1A variants received antirheumatic therapy before genetic testing. Treatments included intravenous glucocorticoids (GC) (45.5%), oral GC (45.5%), intravenous immunoglobulin (18.1%), methotrexate (48.5%), cyclosporine (18.1%), azathioprine (3%), mesalazine (3%), sulfasalazine (3%), and biological (b) disease-modifying antirheumatic drugs (bDMARDs) (72.7%). Of those on bDMARDs, 39.4% received tocilizumab, 9.1% abatacept, 6.1% canakinumab, 6.1% infliximab, 3% rituximab, 3% etanercept, 3% adalimumab, and 3% certolizumab pegol. Among 24 patients with three prior bDMARD switches before genetic diagnosis, 17 (70.8%) achieved remission: 7 on tocilizumab, 6 on canakinumab, 2 on adalimumab, 1 on infliximab, and 1 on rituximab. After confirming AID, all patients received biological therapy: 9 previously untreated patients started canakinumab (3), tocilizumab (3), or etanercept (3); 7 switched drugs after ineffective prior therapy. After all therapy adjustments, all patients achieved remission: 13 on tocilizumab, 11 on canakinumab, 3 on adalimumab, 2 on etanercept, 1 on golimumab, 1 on rituximab, and 1 with GC and colchicine followed by withdrawal. Patients started on bDMARDs after genetic testing required fewer drug switches than those treated empirically before diagnosis (0.23 ± 0.42 vs 0.9 ± 0.6, P = 0.001).

CONCLUSION

Variants in the TNFRSF1A gene may cause a wide range of clinical symptoms, including eye and intestinal lesions that are not typical of sJIA. All patients with fever and unusual sJIA symptoms should have molecular genetic testing for TNFRSF1A variants to confirm or exclude AID early. Early diagnosis enables timely therapy and prevents complications. Tocilizumab (39.3%), canakinumab (33.3%), and TNF inhibitors (21.2%) achieved remission in children with TNFRSF1A variants. Some patients required multiple bDMARD switches to achieve remission, highlighting the complexity of treatment decisions in this group.

Keywords: Autoinflammatory diseases; Genetic; Biological disease modifying antirheumatic drugs; Rheumatology; Pediatric; Children; TNFRSF1A gene

Core Tip: In this study, we perform a comparative analysis of clinical and laboratory data from patients with TNFRSF1A variants and from patients with systemic juvenile idiopathic arthritis without variants in autoinflammation-associated genes, as well as an analysis of drug therapy. As a result of the study, the phenotypic features of patients with tumor necrosis factor receptor-associated periodic syndrome were identified, allowing them to suspect the disease before receiving genetic test results and to identify the most effective drugs for their treatment.

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