Assistant Director – I-Motion Medical Staff Manager: Dr Marina Colella
Assistant Director – I-Motion Non-medical Staff Manager: Saadane Kirouani
I-Motion Pediatric was created at the behest of four partners, the Institute of Myology, AFM-Téléthon, the AP-HP (Paris public hospital system), and Sorbonne University, and is a paediatric clinical trial platform for neuromuscular diseases. Its objective is to meet the new needs created by the emergence of therapies for diseases that were long-considered incurable, many of which affect children.
Located at the site of the Trousseau Paediatric Hospital in the Division of Infant surgery headed by Prof. Raphaël Vialle, part of the AP-HP (the Paris public hospital system), in the Lemariey building, I-Motion is designed to treat young patients under the best conditions possible, in a tailored, welcoming and secure environment. It benefits from accessibility to the technical platforms, research structures and clinical services of Trousseau Hospital. All of the consultations and specialists can be found at a single location, which also facilitates the follow-up and treatment process, for the children and also for their parents.
As well as its medical care and clinical trial activities, I-Motion Pediatric develops measurement tools to assess the efficacy of treatments, and is also responsible for collecting and storing biological samples.
Access the complete list of registries, databases and clinical trials currently running at the Institute.
Team members
Dr Marina Colella, MD, PhD, Paediatrician, Assistant Director – I-Motion Medical Staff Manager
Saadane Kirouani, Assistant Director – I-Motion Non-medical Staff Manager
Medical and paramedical staff
Dr Andreea Seferian, MD, Paediatric Neurologist
Dr Silvana De Lucia, MD, Paediatric Neurologist
Dr Marta Gomez Garcia de La Banda, MD, Paediatric Neurologist
Eva Biagini, Physiotherapist
Mélina Brindeau, Physiotherapist
Clara Prince, Physiotherapist
Malgorzata Tota, Medical Secretary
Non medical staff
Dominique Duchêne, Project Manager, Clinical Research Associates (CRA) Coordinator
Erwan Gasnier, PhD, Project Manager
Fanny Moraux, Quality Engineer
Marta Peretti, PhD, Clinical Research Associate (CRA)
Aurélie Phelep, PhD, Clinical Research Associate (CRA)
Mohamed Ibrahim, Clinical Research Associate (CRA)
Key publications
- Choice of compound, dosage, and management of side effects for long-term corticosteroid treatment in Duchenne muscular dystrophy: Guidelines from the Neuromuscular Commission of the French Society of Pediatric Neurology. Fontaine Carbonnel S, Dabaj I, de Montferrand C, Rippert P, Laugel V, De Lucia S, Ravelli C, Seferian A, Ropars J, Cances C.Arch Pediatr. 2024 Oct;31(7):410-418. doi: 10.1016/j.arcped.2024.05.003. Epub 2024 Sep 27. PMID: 39332946
- Titin copy number variations associated with dominant inherited phenotypes. Perrin A, Métay C, Savarese M, Ben Yaou R, Demidov G, Nelson I, Solé G, Péréon Y, Bertini ES, Fattori F, D’Amico A, Ricci F, Ginsberg M, Seferian A, Boespflug-Tanguy O, Servais L, Chapon F, Lagrange E, Gaudon K, Bloch A, Ghanem R, Guyant-Maréchal L, Johari M, Van Goethem C, Fardeau M, Morales RJ, Genetti CA, Marttila M, Koenig M, Beggs AH, Udd B, Bonne G, Cossée M. J Med Genet. 2024 Mar 21;61(4):369-377. doi: 10.1136/jmg-2023-109473. PMID: 37935568
- Effects of gene replacement therapy with resamirigene bilparvovec (AT132) on skeletal muscle pathology in X-linked myotubular myopathy: results from a substudy of the ASPIRO open-label clinical trial. Lawlor MW, Schoser B, Margeta M, Sewry CA, Jones KA, Shieh PB, Kuntz NL, Smith BK, Dowling JJ, Müller-Felber W, Bönnemann CG, Seferian AM, Blaschek A, Neuhaus S, Foley AR, Saade DN, Tsuchiya E, Qasim UR, Beatka M, Prom MJ, Ott E, Danielson S, Krakau P, Kumar SN, Meng H, Vanden Avond M, Wells C, Gordish-Dressman H, Beggs AH, Christensen S, Conner E, James ES, Lee J, Sadhu C, Miller W, Sepulveda B, Varfaj F, Prasad S, Rico S. EBioMedicine. 2024 Jan;99:104894. doi: 10.1016/j.ebiom.2023.104894. Epub 2023 Dec 12. PMID: 38086156
- Pathogenic DPAGT1 variants in limb-girdle congenital myasthenic syndrome (LG-CMS) associated with tubular aggregates and ORAI1 hypoglycosylation. Brande LV, Bauché S, Pérez-Guàrdia L, Sternberg D, Seferian AM, Malfatti E, Silva-Rojas R, Labasse C, Chevessier F, Carlier P, Eymard B, Romero NB, Laporte J, Servais L, Gidaro T, Böhm J. Neuropathol Appl Neurobiol. 2023 Dec 20:e12952. doi: 10.1111/nan.12952. Online ahead of print. PMID: 38124360
- Safety and efficacy of gene replacement therapy for X-linked myotubular myopathy (ASPIRO): a multinational, open-label, dose-escalation trial. Shieh PB, Kuntz NL, Dowling JJ, Müller-Felber W, Bönnemann CG, Seferian AM, Servais L, Smith BK, Muntoni F, Blaschek A, Foley AR, Saade DN, Neuhaus S, Alfano LN, Beggs AH, Buj-Bello A, Childers MK, Duong T, Graham RJ, Jain M, Coats J, MacBean V, James ES, Lee J, Mavilio F, Miller W, Varfaj F, Murtagh M, Han C, Noursalehi M, Lawlor MW, Prasad S, Rico S. Lancet Neurol. 2023 Dec;22(12):1125-1139. doi: 10.1016/S1474-4422(23)00313-7. PMID: 37977713
- Safety, tolerability and pharmacokinetics of eteplirsen in young boys aged 6-48 months with Duchenne muscular dystrophy amenable to exon 51 skipping. Mercuri E, Seferian AM, Servais L, Deconinck N, Stevenson H, Ni X, Zhang W, East L, Yonren S, Muntoni F; 4658-102 Study Group. Neuromuscul Disord. 2023 Jun;33(6):476-483. doi: 10.1016/j.nmd.2023.03.008. Epub 2023 Mar 24. PMID: 37207382
- T Cell Responses to Dystrophin in a Natural History Study of Duchenne Muscular Dystrophy. Anthony K, Ala P, Catapano F, Meng J, Domingos J, Perry M, Ricotti V, Maresh K, Phillips LC, Servais L, Seferian AM, De Lucia S, de Groot I, Krom YD, Verschuuren JGM, Niks EH, Straub V, Guglieri M, Voit T, Morgan J, Muntoni F. Hum Gene Ther. 2023 May;34(9-10):439-448. doi: 10.1089/hum.2022.166. Epub 2023 Feb 24. PMID: 36453228
- Correction to: Use of MFM-20 to monitor SMA types 1 and 2 patients treated with nusinersen. Le Goff L, Seferian A, Phelep A, Rippert P, Mathieu ML, Cances C, de Lattre C, Durigneux J, Gousse G, Vincent-Genod D, Ribault S, Gómez García de la Banda M, Quijano-Roy S, Sarret C, Servais L, Vuillerot C. Neurol Sci. 2023 Mar;44(3):1139. doi: 10.1007/s10072-022-06522-w. PMID: 36418612
- Use of MFM-20 to monitor SMA types 1 and 2 patients treated with nusinersen. Le Goff L, Seferian A, Phelep A, Rippert P, Mathieu ML, Cances C, de Lattre C, Durigneux J, Gousse G, Vincent-Genod D, Ribault S, Gomez Garcia de la Banda M, Quijano-Roy S, Sarret C, Servais L, Vuillerot C. Neurol Sci. 2023 Jan;44(1):329-337. doi: 10.1007/s10072-022-06403-2. Epub 2022 Sep 29. PMID: 36175810
- Financial cost and quality of life of patients with spinal muscular atrophy identified by symptoms or newborn screening. Dangouloff T, Hiligsmann M, Deconinck N, D’Amico A, Seferian AM, Boemer F, Servais L. Dev Med Child Neurol. 2023 Jan;65(1):67-77. doi: 10.1111/dmcn.15286. Epub 2022 Jun 8. PMID: 35673937