Production of national guidelines for assessment and care of children born with rare craniofacial/ORL malformations.
Production of procedures for diagnosis announcement.
Diffusion of our guidelines to the Competence centers and professionals over France.
Giving external advices (Mails, staffs, digital consultations, visioconferences..).
Healthcare is provided from prenatal diagnosis to adulthood involving all following specialties: pediatric neurosurgery, plastic surgery, pediatric intensive care unit, maxillo-facial surgery, oral surgery, ENT and cervicofacial surgery, ophtalmology, pediatrics, genetics, orthodontics, pediatric dentistry, anesthesiology, neurology, radiology, psychology, psychiatry, social work, speech therapy and home ventilation.
Therapeutic strategies are intertwined to limit the impact on family life and school. The goal is the functional, morphological, aesthetic and psychologic rehabilitation, that often means repeated surgeries (5 to 20 procedures). Surgery is the treatment key. It involves maxillofacial surgery, plastic and reconstructive surgery, otorhinolaryngological and cervicofacial surgery. Multidisciplinary staff meetings to discuss strategies.
Research is an integrated part of care and this is done in close collaboration with the French genetics institute Imagine within the same campus in Necker, INSERM units. Research is also coordinated with other European expert centers.
Publication of outcome results is done in peer-reviewed journals of specialized and more general biomedicine (genetics, dermatology, mineralized tissues, development).
All teams contribute to outcome standards at an international level: in collaboration with Pr Mathijssen who is involved in ICHOM. Cleft, lip, palate is already completed. Craniofacial microsomia is in development and craniosynostosis is scheduled for next year.
4. Organisation of databases for epidemiologic clarification (Cemara, Bamara, Orphanet thesaurus) Cemara/Bamara database are analyzed (data quality, thesaurus) to provide the national rare disease prevalences.
5. Formation and information
Students and health professionals. in service-training, continuing education.
Information to patients associations and large public.
Formation of the professionals of the network masters, PhD, Post-docs.
All RDRCs teams offer fellowships in craniofacial surgery, cleft surgery, otorhinolaryngological and head and neck surgeries.
6. Organisation of out-patients medical and psychosocial cares and rehabilitation
7. Collaborations with scientific societies: SFORL, AFOP, ESPO, ASPO, ESCFS, ISCFS, SOFCPRE, EACMFS, ISSVA