West Midlands Regional Centre for Cleft Lip & Palate Birmingham Children’s Hospital NHS Foundation Trust

Principle contact details

Contact name:Ms Rona Slator, Clinical Lead
Address:Birmingham Childrens Hospital
Steelhouse Lane
B4 6NH
Country:United Kingdom
Telephone:+44121 333 8235
Web address:Visit website

Map of location

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Other team members

Surgeon:Mr Bruce Richard+441213338132; Ms Patricia Rorison +441213338129
Speech therapist:Mrs Alison Jeremy (lead SLT) +441213339387
Orthodontist:Mr Lars Enocson (lead) +441213338078
Clinical geneticist:Dr Jenny Morton +441216272360
Otolaryngologist:Mr Michael Kuo (lead) +441213338139
Specialist nurse:Mrs Michelle Jones (lead) +441213338092
Psychologist:Dr Rebecca Hodgetts +441213338062
Other:Mrs Victoria Clark – Dentist +441213338078; Mr Ian Sharp – Maxillofacial Surgeon +441213338078; Ms Caroline Tiernan (Lead Audiologist) +441213339360
Patient follow up:Cleft Administration Team: Mr Alexander Levine, Information Manager; Mr Mark Bridgens, Clinic Coordinator: +441213338235

Support group

Support group address:CLAPA – The Cleft Lip And Palate Association
Website: www.clapa.com

Annual case load

Cleft palate:48
Pierre Robin:13
Cleft lip (CL) Unilateral (UCL):24
Bilateral (BCL):12
Number of syndromic cases:About 16-17 cases per year in the various syndromes listed on the attached.

Primary surgical protocol

Timing of first repair and type of operation.

Complete UCLP:Lip Repair: 3 months; Palate Repair: 6 – 9 months; ABG: 8y
Complete BCLP:Lip Repair: 3 months; Palate Repair: 6 – 9 months; ABG: 8y
Isolated CP:6 – 9 months

Record collection protocol

Are records routinely collected at specific ages?Yes
What record taking protocol is used:Birth, 5 years, 10 years (include types of records taken and include note about craniofacial society guidance)

State coverage of costs

Are the costs of the following treatments covered by the state (free to the patient)?

Surgery costs:All
Orthodontic costs:All
Speech and language therapy costs:All
Comments on the service provision:All services provided by NHS throughout life

Clinical research

Clinical team members who are or would like to be involved in clinical research:

Member details:Cleft Team - Various - Various

Current research activity and data collection

Type(s) of software used:Excel, Access, Word, SymNose
Participation in inter-centre studies:Yes
Details of studies:Tri-Centre: West Midlands, South WalesSouth West, Spires
Participation in other collaborations (projects):Yes
Details of projects:Cleft Care UK, TOPS Trial, Cleft Collective
Research grant funding received:Yes
Details of funding:Cleft Care UK, TOPS Trial
Willing to share Powerpoint presentations:Yes

EU Biobank

Stored CLP DNA samples available for use in future studies:

Number for CP:We are unaware of any samples stored in Birmingham
Number for CLP:We are unaware of any samples stored in Birmingham
Other CFA:We are unaware of any samples stored in Birmingham

Potential clinical research activities

Clinical research activities interested in being involved in:

Randomised clinical trials:Yes
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:Craniofacial Society of Great Britain and Ireland