Cleft and craniofacial Center Lille
Principle contact details
| Contact name: | Me Aurélie KOSMALA |
| Address: | Centre de Référence des malformations Cranio maxillo faciales Rares Hôpital Salengro Centre Hospitalier et Universitaire de Lille 59037 Lille Cedex France |
| Country: | France |
| Telephone: | +33 20 44 54 22 |
| Email: | malface@chru-lille.fr |
| Web address: | Visit website |
Other team members
| Surgeon: | Pr Philippe PELLERIN(plastic surgeon); Pr Véronique MARTINOT(plastic Surgeon); Dr Alexis WOLBER(Plastic surgeon); Dr Pierre GUERRESCHI(Plastic Surgeon;Dr Marie Madeleine BARALLE(maxillo facial surgeon); Pr Patrick DHELLEMMES(neurosurgeon); Pr Matthieu VINCHON(neurosurgeon); Dr Marc BARONCINI(neurosurgeon) |
| Speech therapist: | Me Mrie ARNOLDI; Me Lea DELOFFRE |
| Orthodontist: | Me Nathalie FOURMOU |
| Clinical geneticist: | Pr Sylvie MANOUVRIER; Dr Odile BOUTE; Dr Anne DIEUX |
| Otolaryngologist: | Dr Pierre FAYOUX |
| Specialist nurse: | Me Fatiah DIAFI |
| Psychologist: | Me Caroline FROCHISSE |
| Other: | Coordinator Secretary: Me Aurelie KOSMALAOphtalmologist: Dr Sabine DEFOORT-DHELLEMMES, Dr Elsa LAUMONIER. |
| Patient follow up: | Pr Philippe PELLERIN |
Support group
| Support group address: | Generation 22 (catch 22): http:www.generation22.fr Belgique : www.fente-labiale.org Suisse : www.bouche-a-oreilles.org |
Primary surgical protocol
Timing of first repair and type of operation.
| Complete UCLP: | neonate |
| Complete BCLP: | neonate |
| Isolated CP: | 10 month |
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: | all the team members |
Non-clinical and laboratory research
Non-clinical and laboratory team members who are or would like to be involved in clinical research:
| Member details: | no one on a systematic way. We use to ask help for specific requirement depending of a research. our team is part of a big university center and any cooperation in any field is avalaible. |
Current research activity and data collection
| Type(s) of software used: | Two specific data bases are commonly in use in our team since over 20 year developed under Filemaker Pro |
| Participation in inter-centre studies: | Yes |
| Details of studies: | French network of cleft lip (we are leading this network in cooperation with the Dep Of Cl&p, Pr Vazquez Hop. Trousseau-Necker Paris on the behalf of French health ministery) prospective study on the consequences of the time for cleft lip repair onto the child-parents relationship. retrospective study on the self-affirmation of patients with cleft lip. |
| Participation in other collaborations (projects): | Yes |
| Details of projects: | epidemiology of cleft in France |
| Published research papers: | Yes |
| Details of publications: | go to medline please and look P. Pellerin+ cleft |
| Willing to share Powerpoint presentations: | Yes |
EU Biobank
Stored CLP DNA samples available for use in future studies:
| Number for CP: | we are already involved in a research about non syndromic hereditary cleft with the Pr VIKKULA team at the Brussel UCLA in Belgium all the samples are in its dept. under his responsability |
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 "Association Francophone des Fentes Faciales(A.F.F.F.)" is our scientific society with a bi annual congress, please contact Pr Pellerin Centre de référence des Malformations cranio maxillo faciales rares, C.H.U. de Lille 59037 Lille cedex France as the general Secretary, e-mail : malface@chru-lille.fr On the behalf of the french Health Ministery a network of centers with the label of health care administration has been organized you may found detail following this link:http:www.fente-labio-palatine.frqui-sommes-nousreseau-national-fente |
Useful websites or links
| Useful websites or links: | france : www.fente-labio-palatine.fr Belgique : www.fente-labiale.org Suisse : www.bouche-a-oreilles.org Europe : European Cleft Organisation. Etats Unis : Cleft Palate Foundation. Etc. : http:en.wikipedia.orgwikiCleft_lip_and_palate_organisations |
Total number of cases per annum
| Total cases per annum: | 90 |