CLINICAL TRIALS

I-Motion Pediatric

The I-Motion Pediatric platform is dedicated to clinical trials in children and adolescents with neuromuscular diseases

Medical follow-up of a patient at the i-Motion platform

I-Motion Pediatric

The operational arm of clinical research, I-Motion Pediatric is a clinical trial platform for children, specialising in neuromuscular diseases.

Its aim is to meet the new needs created by the emergence of therapies for diseases long considered incurable, many of which affect children.

Created through the joint commitment of four partners, the Institute of Myology, AFM-Téléthon, Assistance Publique-Hôpitaux de Paris (AP-HP, the Paris public hospital system) and Sorbonne University, I-Motion Pediatric is a clinical trial platform for children whose aim is to meet the new needs created by the emergence of therapies for rare neuromuscular diseases.
Located on the site of the AP-HP Trousseau Paediatric Hospital (Paris, 12th arrondissement), within the paediatric surgery department headed by Prof. Raphaël Vialle, the I-Motion platform enables young patients to be cared for in the best possible conditions, in a suitable, welcoming and secure environment. It benefits from access to the on-site technical facilities, research infrastructure and clinical departments of Trousseau Hospital. All consultations and specialists are available in a single place, which also makes follow-up and care easier for children and their parents.

In addition to its care activities and its clinical trials, I-Motion develops tools to measure how effective treatments are, and also collects and stores biological samples.

Team members

Prof. Kumaran Deiva, MD, PhD, paediatric neurologist, Director of I-Motion Pediatric
Saadane Kirouani, Deputy Director of I-Motion

Dr Andreea Seferian, MD, paediatric neurologist
Dr Silvana De Lucia, MD, paediatric neurologist
Dr Amal Necima Oulhissane-Omar, MD, paediatrician
Mélina Brindeau, physiotherapist
Malgorzata Tota, medical secretary


Erwan Gasnier, PhD, project manager
Dominique Duchêne, project manager, clinical research associate (CRA) coordinator
Aurélie Phelep, PhD, CRA
Saliha Medjoudj, CRA
Louize Ait Meziane, CRA
Abdennour Chellah, CRA

Fanny Moraux, quality engineer

Consultations

More than 400 consultations are provided each year, as outpatient consultations and in the paediatric day hospital, for disease follow-up and/or the administration of innovative therapeutic molecules. They are delivered by a multidisciplinary team of paediatric neurologists, project managers, clinical research associates, a quality manager, clinical study nurses and technicians, physiotherapists and administrative assistants. Having every specialist available in a single place makes follow-up and care easier for children and their parents.

Care provided by physiotherapists

Physiotherapists assess the child’s abilities and organise their rehabilitation follow-up.

Abilities are assessed using the various tests and tools available at I-Motion: the 6-minute walk test (6MWT), the Motor Function Measure (MFM), MyoTools, manual muscle testing (MMT), a full joint assessment, a respiratory assessment and others. These assessments provide an objective picture of how the disease is progressing.

  • When a child is already being followed up in the community, the I-Motion physiotherapists regularly review the programme with the parents and the treating therapist, as it may need adjusting over time as the disease progresses.
  • When a new diagnosis is disclosed, and if rehabilitation proves necessary, the team helps the family find a private practitioner able to care for a child with a neuromuscular disease. As the diseases treated are rare, exchanges by telephone or email are used to brief the practitioner on their specific features. A rehabilitation programme is then drawn up jointly, based on the assessment made during the consultation.
  • When parents do not have access to a specialist practitioner, the physiotherapists teach them how to carry out a basic set of exercises and stretches themselves.

Specific assessment tools adapted for children

Alongside the shared tools presented on the I-Motion page (MFM, NSAA, 6MWT, PUL/RULM, MMT, MyoTools, dynamometry, spirometry, goniometry, ActiMyo, timed tests), further tools are used specifically in paediatrics, adapted to young children and newborns.

  • CHOP INTEND (Children’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders): a scale initially validated to assess infants with infantile spinal muscular atrophy (SMA). It contains 16 items, most of them scored from 0 to 4 (maximum total score: 64).
  • HFMSE (Hammersmith Functional Motor Scale Expanded): a scale used to assess physical abilities in children with SMA types 2 and 3. It contains 33 items scored on a 0-1-2 scale (total score: 66), ordered so as to limit changes of position and fatigue.
  • GMFM (Gross Motor Function Measure): a measure designed to assess changes in gross motor function over time in children with a neuromotor impairment of central origin. It contains 88 or 66 items covering the spectrum of motor activities (sitting, crawling, kneeling, walking, running and jumping).
  • Bayley scale: assesses development in children under four years of age across five domains: cognitive, language (receptive and expressive), motor (gross and fine), social-emotional and adaptive. Standardised mean motor score: 100 (SD 15); a score below 85 indicates mild impairment, and below 70 moderate to severe impairment.
  • Peabody scale: made up of six sets of items assessing reflex responses, sitting and balance, locomotion, object manipulation, grasping and visual-motor integration. It measures motor skills in children from birth to five years of age.

Frequently asked questions

For a child to take part in a clinical trial at I-Motion, the family must be covered by a European social security scheme. The next step is to book an appointment with one of the platform doctors, who will assess whether the child is eligible.

No. Trials are entirely funded and covered by the sponsor of the study.

The duration depends on the phase (1, 2 or 3) and on the study protocol. This can be discussed in detail at a first consultation, depending on the trial in question.