Long-Term Follow Up in Anti-Contactin-1 Autoimmune Nodopathy

Marta Caballero-avila, Lorena Martin-Aguilar, Elba Pascual-Goni, Milou R. Michael, Marleen J. A. Koel-Simmelink, Romana Hoeftberger, Julia Wanschitz, Alicia Alonso-Jimenez, Thais Armangue, Adaja Elisabeth Baars, Alvaro Carbayo, Barbara Castek, Roger Collet-Vidiella, Jonathan De Winter, Maria angeles del Real, Emilien Delmont, Luca Diamanti, Pietro Emiliano Doneddu, Fu Liong Hiew, Eduard GallardoAmaia Gonzalez, Susanne Grinzinger, Alejandro Horga, Stephan Iglseder, Bart C. Jacobs, Amaia Jauregui, Joep Killestein, Elisabeth Lindeck Pozza, Laura Martinez-Martinez, Eduardo Nobile-Orazio, Nicolau Ortiz, Helena Perez-Perez, Kai-Nicolas Poppert, Paolo Ripellino, Jose Carlos Roche, Franscisco Javier Rodriguez de Rivera, Kevin Rostasy, Davide Sparasci, Clara Tejada-Illa, Charlotte C. E. Teunissen, Elisa Vegezzi, Tomas Xucla-Ferrarons, Fabian Zach, Luuk Wieske, Filip Eftimov, Cinta Lleixa, Luis Querol*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

1 Citation (Scopus)

Abstract

Objective: To analyze long-term clinical and biomarker features of anti-contactin-1 (CNTN1) autoimmune nodopathy (AN). Methods: Patients with anti-CNTN1 + autoimmune nodopathy detected in our laboratory from which clinical information was available were included. Clinical features and treatment response were retrospectively collected. Autoantibody, serum neurofilament light chain (sNfL), and serum CNTN1 levels (sCNTN1) were analyzed at baseline and follow up. Results: A total of 31 patients were included. Patients presented with progressive sensory motor neuropathy (76.7%) with proximal (74.2%) and distal involvement (87.1%), ataxia (71.4%), and severe disability (median INCAT at nadir of 8). A total of 11 patients (35%) showed kidney involvement. Most patients (97%) received intravenous immunoglobulin, but only 1 achieved remission with intravenous immunoglobulin. A total of 22 patients (71%) received corticosteroids, and 3 of them (14%) did not need further treatments. Rituximab was effective in 21 of 22 patients (95.5%), with most of them (72%) receiving a single course. Four patients (12.9%) relapsed after a median follow up of 25 months after effective treatment (12–48 months). Anti-CNTN1 titers correlated with clinical scales at sampling and were negative after treatment in all patients, but 1 (20/21). sNfL levels were significantly higher and sCNTN1 significantly lower in anti-CNTN1 + patients than in healthy controls (sNfL: 135.9 pg/ml vs 7.48 pg/ml, sCNTN1: 25.03 pg/ml vs 22,186 pg/ml, p < 0.0001). Both sNfL and sCNTN1 returned to normal levels after successful treatment. Interpretation: Patients with anti-CNTN1 + autoimmune nodopathy have a characteristic clinical profile. Clinical and immunological relapses are infrequent after successful treatment, suggesting that continuous treatment is unnecessary. Anti-CNTN1 antibodies, sNfL, and sCNTN1 levels are useful to monitor disease status in these patients. ANN NEUROL 2025;97:529–541.

Original languageEnglish
Pages (from-to)529-541
Number of pages13
JournalAnnals of Neurology
Volume97
Issue number3
Early online date27 Nov 2024
Publication statusPublished - Mar 2025

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© 2024 American Neurological Association.

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