“LE TREFLE” L’équipe de traitement des fentes labio palatines d’Ecully, Clinique du Val d’Ouest (Lyon)
Principle contact details
| Contact name: | Dr Isabelle James |
| Address: | Clinique du Val d'Ouest 39 Chemin de la Vernique 69130 Ecully |
| Country: | France |
| Telephone: | +33472193399 |
| Email: | i.james@valdouest.fr |
| Web address: | Visit website |
Other team members
| Surgeon: | Dr I.JamesDr T.Kraft, Dr JD Brouland, Dr P.Pierrillas |
| Speech therapist: | MmeA.S.Goyet |
| Orthodontist: | Pr J.J Aknin, Dr J Godeneche |
| Clinical geneticist: | DrM.Rossi |
| Otolaryngologist: | Dr F.Sevin, Dr D Demolin, MmeBPleynet |
| Specialist nurse: | MmeP.Costanzo |
| Psychologist: | Dr D.Combourieux echo dg prenatal Dr MF Polette pedodontiste |
| Other: | Dr James is in charge of pluridisciplinary consultation ; patients are seen every year or less if necessary, at each review we make sure that all Xrays, clinical photos or scanographic controls are done, and reporting is standardized, usb key with medical datas is given to parents |
Support group
| Support group address: | Le Trefle : Mme Sauzay Telephone: +33675603607 E-mail: swann.sauzay@free.fr Website: trefle69.free.fr |
Annual case load
| Cleft palate: | 20 |
| Pierre Robin: | 6 |
| Cleft lip (CL) Unilateral (UCL): | 25 |
| Bilateral (BCL): | 9 |
| Number of syndromic cases: | 10 ( di george, kabuki, déletion ch 3 ,EEC, francheschetti, holoprosencephaly,van der wood, orodigitofacial) |
Primary surgical protocol
Timing of first repair and type of operation.
| Complete UCLP: | At 3monthes: veloplasty sommerlad+lip,nose malek, talemant on the nose ,at 6 or 8 monthes hard palate closure talemant |
| Complete BCLP: | At 3monthes: veloplasty sommerlad+lip,nose malek, talemant on the nose ,at 6 or 8 monthes hard palate closure talemant |
| Isolated CP: | All in one at 3 monthes if possible , if not veloplasty at 3 and hard palate at 6 monthes |
Record collection protocol
| Are records routinely collected at specific ages? | Yes |
| Does this conform to WHO timing recommendations (birth, 5, 10, 15 and 20 years)? | Yes |
State coverage of costs
Are the costs of the following treatments covered by the state (free to the patient)?
| Surgery costs: | All |
| Orthodontic costs: | Part |
| Speech and language therapy costs: | All |
Clinical research
Clinical team members who are or would like to be involved in clinical research:
| Member details: | I.James - Pediatric surgery - clinical comparison between teams P.Pierrillas - Maxillofacial surgery - J.Godeneche - orthodontics - orthodontic equipements |
Non-clinical and laboratory research
Non-clinical and laboratory team members who are or would like to be involved in clinical research:
| Member details: | M.Rossi - genetics - correlation between genes and phenotypes of clefts |
Current research activity and data collection
| Participation in inter-centre studies: | Yes |
| Details of studies: | Evaluation à 5 ans des enfants porteurs de fentes labiopalatines totales…( paris strasbourg ecully grenoble) C.Dissaux……fellow in strasbourg |
| Participation in other collaborations (projects): | Yes |
| Details of projects: | Sequence de pierre robin prise en charge orthophonique précoce Dr James Maitre de mémoire Evaluation orthophonique de 30 enfants porteurs de fentes labiopalatines avant toute rééducation orthophonique à 3ans Dr James Maitre de mémoire |
| Willing to share Powerpoint presentations: | Yes |
Potential clinical research activities
Clinical research activities interested in being involved in:
| Inter-centre comparison of outcome: | Yes |
| Prospective study: | Yes |
| DNA collection: | Yes |
Potential laboratory based research activities
Laboratory based research activities interested in being involved in:
| Laboratory genetics/genomics research: | Yes |
National cleft lip and palate / craniofacial scientific organisation
| Organisation details: | the AFFF ( association francophone des fentes faciales) This association had been created 10 years ago we meet for congress every other year; in france rare decease are treated in reference and competence centers in each region, about 15 centers we are one of these |