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
Telephone:+33 20 44 54 22
Web address:Visit website

Map of location

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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):
Belgique :
Suisse :

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)?

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 :

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 :
Belgique :
Suisse :
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