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AB1352 Survey of off-label anti-IL1 treatments in france: One-year results
  1. L. Rossi-Semerano1,
  2. B. Fautrel2,
  3. C. Galeotti1,
  4. D. Wendling3,
  5. E. Hachulla4,
  6. G. Grateau5,
  7. M. Fouillet-Desjonquères6,
  8. O. Richer7,
  9. I. Touitou8,
  10. I. Kone-Paut1
  1. 1Department of Paediatrics and Paediatric Rheumatology, Hôpital De Bicêtre, National Reference Centre For Auto-Inflammatory Diseases, Le Kremlin-Bicêtre, France, Le Kremlin Bicêtre
  2. 2Rheumatology, Hôpital La Pitié Salpêtrière, Université Pierre et Marie Curie, Paris
  3. 3Rheumatology, CHU Besançon, Besançon
  4. 4Internal medicine, Centre de Référence des Maladies Auto-immunes et Maladies Systémiques Rares, CHRU Lille, Lille
  5. 5Internal medicine, Centre de Référence de Maladies Systémiques et Auto-immunes Rares, Hôpital Tenon, Université Pierre et Marie Curie, Paris
  6. 6Paediatrics and Paediatric Nephrology, Hôpital Femme Mère Enfant, CHU Lyon, Lyon
  7. 7Paediatrics, CHU Bordeaux, Bordeaux
  8. 88Unité Médicale des Maladies Auto-inflammatoires, Laboratoire de Génétique, CHRU Montpellier, Montpellier, France


Background Despite their limited licensed indications, anti-IL1 agents are often used in real-life practice for an increasing number of diseases. A national survey to record their off-label use in France was started in January 2011. The survey is coordinated by the French National Reference Centre for Auto-inflammatory Diseases, under the aegis of the “Club Rhumatisme et Inflammation” (CRI).

Objectives The survey aims to gather information concerning: the number of patients treated with anti-IL1 agents in France, the treated disease, the kind and the indication of the used anti-IL1 agents, their efficacy and safety

Methods We set up a physician-directed questionnaire available on the CRI website since January 2011, covering the following areas: patient data, disease data, anti-IL1 agent, its efficacy, adverse events (AE). We advertised the study on the occasion of French and European rheumatology congresses and by e-mail to French physicians who were willing to participate. Any adult or paediatric patient who had received an anti-IL1 agent since January 2005 in France could be included after medical informed consent.

Results At present 143 patients (101 adults, 42 children), from 27 centres have been included. Main diseases were: systemic onset juvenile idiopathic arthritis (SoJIA) (22), adult onset Still’s disease (AoSD) (21), cryopirin associated periodic syndrome (CAPS) (20), gout (13), mevalonate kinase deficiency (MKD) (12), SAPHO (9), familial Mediterranean fever (FMF) (9), and Schnitzler’s syndrome (7). The main off-label used agent was anakinra, used at least once in 139 patients. Canakinumab was used in 21 patients. Rilonacept is not yet available in France. Anakinra, showed partial to complete efficacy in most patients; complete clinical response rates varied according to specific diseases, being higher in gout, CAPS, AoSD and Schnitlzler’s syndrome. The majority of patients showed at least one AE, mainly minor injection site reactions,and some showed a serious AE (SAE), mainly severe infection. Preliminary data of our survey suggest that canakinumab was generally well tolerated, without any SAE

Conclusions One-year results of the survey confirm the wide use of anti-IL1 agents in clinical practice. The survey definite results might justify controlled clinical trials leading to widen the licensed indications for this class of therapeutics

Disclosure of Interest L. Rossi-Semerano Grant/Research support from: Swedish Orphan Biovitrum, B. Fautrel: None Declared, C. Galeotti: None Declared, D. Wendling: None Declared, E. Hachulla Consultant for: Swedish Orphan Biovitrum, Novartis, G. Grateau Consultant for: Novartis, M. Fouillet-Desjonquères: None Declared, O. Richer: None Declared, I. Touitou: None Declared, I. Kone-Paut Grant/Research support from: Swedish Orphan Biovitrum, Consultant for: Novartis

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