Coordinating centre

Hôpital Armand Trousseau – AP-HP Sorbonne Université

26 avenue du Dr Arnold Netter, 75571 PARIS Cedex 12

The team

Foetal medicine

Pr Jean-Marie JOUANNIC

Head of the coordinating reference centre.

Obstetric gynaecologist and head of the foetal medicine department at Trousseau Hospital. A pioneer in France in the technique of in utero repair of myelomeningocele (PRIUM programme), he and his team are responsible for the antenatal care of vertebral and spinal cord malformations.

Dr Ferdinand DHOMBRES

Obstetrician-gynaecologist

An obstetrician-gynaecologist, expert in foetal medicine, he carries out reference foetal ultrasound at the Trousseau Hospital, with a particular interest in the early diagnosis of these malformations. In parallel with her work in hospital, he conducts research in Medical Informatics (LIMICS Lab) and Medical terminologies. He is responsible for updating rare disease classifications (Orphanet) in collaboration with European rare disease networks (ITHACA).

Dr Lucie GUIBAULD

Obstetrician-gynaecologist

An obstetrician-gynaecologist specialising in foetal medicine, she cares for patients whose foetuses have vertebral and/or spinal cord anomalies. In parallel with her work in hospital, she conducts research aimed at gaining a better understanding of dysraphism and improving foetal therapy for these malformations. She has received numerous awards and grants for her work on dysraphism (ASBH, Académie de Médecine, Fulbright Commission, Monahan Foundation, CNGOF, Fondation de l’Avenir, etc.).

Dr Paul MAURICE

Obstetrician-gynaecologist

Specialist in foetal medicine and surgery. He is involved in the care of patients referred to the Trousseau centre following prenatal diagnosis of vertebral anomalies or dysraphism. He is a member of the team involved in foetal surgery to repair myelomeningocele.

Dr Loriane FRANCHINARD

Obstetrician-gynaecologist

Specialist in foetal medicine and surgery. She is involved in the care of patients referred to the Trousseau centre following prenatal diagnosis of vertebral anomalies or dysraphism. She is a member of the team involved in foetal surgery to repair myelomeningocele.

Physical Medicine and Rehabilitation

Dr Pauline LALLEMANT-DUDEK

The physical medicine and rehabilitation department diagnoses and cares for children with disabilities, in particular for spinal cord pathologies, motor disorders, vesico-sphincter disorders of malformative, neurological and functional origin, and constitutional bone diseases. Dr Lallemant-Dudek is in charge of coordination.

Dr Hina SIMONNET

An paediatrician, Dr. Hina Simonnet cares for children with rare diseases and complex disorders. A program of early rehabilitation in the first months of life has been created for children with cerebral and/or spinal cord injuries, in collaboration with the department’s physiotherapists and occupational therapist.

The nursing team

Sophie Le Goff, Manon Perret and Andréa Ferreira make up the department’s nursing team. They take part in consultations and are in charge of the Therapeutic Patient Education program for continence care.

Sandy MORIN

Kinesitherapist Sandy Morin is identified in the department for perineal re-education for continence disorders, whatever their origin. She is also developing early care for toddlers at risk of psychomotor development disorders.

Pediatric Orthopedic Surgery

Pr Raphaël VIALLE

Head of the Department of Orthopaedic Surgery, he is principally involved in the diagnosis and treatment of neuromuscular diseases of the musculoskeletal system. He is particularly involved in the surgical treatment of spinal and thoracic deformities in children and adolescents. He is co-founder and co-director of the University Hospital Department of “Musculoskeletal Diseases and Therapeutic Innovations” (DHU Mamuth) with Professor Thomas Voit from 2013 to 2018, then of the University Hospital Federation (FHU Mamuth) with Professor Bertrand Fontaine since 2020.

Dr Timothée DE SAINT DENIS

After training as a neurosurgeon in Lille, France, Dr de Saint-Denis’ arrival in pediatric practice in Paris in 2015 under the mentorship of Prof. Michel Zerah quickly focused his practice on spinal cord and spinal column pathologies. His multidisciplinary expertise covers patients with spinal dysraphism (Spina Bifida), or complex spinal deformities sometimes associated with genetic diseases (MOC, metabolic diseases, neurofibromatosis…). He joined the CORE unit at Trousseau Hospital in March 2022. The neurosurgical practice has its place from the ante-natal period (counseling, in utero surgery), at birth and throughout growth to the transition to adulthood. This hospital practitioner’s interest in research has not waned since his years at the Ecole Normale (Ulm) and a master’s degree in developmental biology: new collaborative classification of dysraphisms, PRIUM 2, but above all a long-term investment in gene and enzyme therapy projects in the pre-clinical phase with the GENOV team (Paris Brain Institute ICM) and in the clinical phase with neuropediatrics teams.

Paediatric radiology

Pre Eléonore BLONIAUX

Paediatric radiologist at Armand Trousseau Hospital, DMU DIAMENT – APHP, Paris. University Professor – Hospital Practitioner, Sorbonne University Faculty of Medicine. She is coordinator of the DES in radiology for the Ile-de-France region, a board member of the Société Francophone d’Imagerie Pédiatrique et Prénatale (SFIPP) and a member of the ‘Prenatal Imaging’ task force of the European Society of Pediatric Radiology (ESPR).

Foetopathology

Dr Eugénie JOLIVET

An obstetric gynaecologist in the Foetal Medicine Department, she carries out antenatal diagnostic consultations and obstetric ultrasound scans. She is also in charge of the foetopathology unit at APHP Sorbonne Université in Trousseau, which carries out post-mortem examinations of foetuses after medical termination of pregnancy or foetal death in utero, to help diagnose malformations and provide subsequent genetic counselling for parents and their families.

Medical Genetics Unit

Dr Daphnée LEHALLE

Paediatrician and geneticist, hospital practitioner, head of the “Malformative Syndromes and Developmental Anomalies” reference centre at Trousseau Hospital (APHP.Sorbonne University). She is responsible for diagnosing and caring for children and young adults with malformative syndromes, with or without intellectual development disorders, genetic counselling for family members, and prenatal diagnosis.

Dr Solveig HEIDE

A medical geneticist, hospital practitioner and head of the “Malformative Syndromes and Developmental Anomalies in Adults” reference centre, Pitié Salpêtrière site, APHP.Sorbonne University. His areas of expertise are the diagnosis, monitoring and care of malformative syndromes and/or intellectual development disorders of genetic origin, at all stages of life.

CRMR Spin@ Project Manager

Zineb LESIEUR (PhD)

Doctor of Science from the University of Reims Champagne-Ardenne and senior research engineer, she coordinates all the actions set up by the coordinating centre, in collaboration with the various associated members.

CRMR clinical research associates

Sabrina AZZOUG et Sorelle MBOUM

As Clinical Research Associates, they are responsible for completing the rare disease forms for the PM&R and orthopaedic surgery departments and for completing the BaMaRa database for foetal medicine. They are responsible for the scientific and administrative monitoring of clinical trials conducted by the centre.

Care

At the coordinating centre, we offer care with

  • Standard consultations in foetal medicine, PM&R and/or orthopaedics.
  • Multidisciplinary consultations with a neurosurgeon, paediatrician, physiotherapist, psychologist and/or social worker.
  • Therapeutic education nursing consultations.
  • Day hospital or standard inpatient hospitalisation.