North Thames Cleft Centre (GOSTA)

Principle contact details

Contact name:Mr. Guy Thorburn
Address:Great Ormond Street Hospital
Great Ormond Street
Country:United Kingdom
Telephone:+44 20 7829 7922
Web address:Visit website

Map of location

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Other team members

Surgeon:G. Thorburn, P. Morris, Loshan Kangesu
Speech therapist:Marie Pinkstone; Debbie Sell; Anne Mayne; Natalie Pancewicz; L. Rostwood
Orthodontist:Brijesh Patel; Whay
Clinical geneticist:Melissa Lees
Otolaryngologist:Lesley Cochrane
Specialist nurse:Jill Bailey; Julie Hughes; Melanie Lindup
Psychologist:Joanna Shearer
Other:Dr. Raouf Chorbachi, Consultant Audiologist; Mr Peter Ayliffe, Consultant Maxillofacial Surgeon
Patient follow up:Louise Conn; K. Gaj

Support group

Support group address:CLAPA

Annual case load

Cleft palate:~70-80
Pierre Robin:~ 10
Cleft lip (CL) Unilateral (UCL):25-30
Bilateral (BCL):~10

Primary surgical protocol

Timing of first repair and type of operation.

Complete UCLP:1. Lip + nose + vomer to hard palate - 3 months; 2. Palate repair - 8-10 months
Complete BCLP:l. Lip adhession + vomer + nose - 3 months; 2. Palate repair - 8-10 months
Isolated CP:palate repair 8-10 months

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:All
Speech and language therapy costs:All
Comments on the service provision:But restricted local SLT depending on age and address - Speech & language therapy

Clinical research

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

Member details:All

Non-clinical and laboratory research

Non-clinical and laboratory team members who are or would like to be involved in clinical research:

Member details:P. Stanier - Genetics - Genetics

M. Birch - Physicist - MRI

Current research activity and data collection

Type(s) of software used:Access
Participation in inter-centre studies:Yes
Details of studies:Crane
Participation in other collaborations (projects):Yes
Details of projects:Various
Published research papers:Yes
Details of publications:Multiple
Research grant funding received:Yes
Willing to share Powerpoint presentations:Yes

EU Biobank

Stored CLP DNA samples available for use in future studies:

Number for CP:Precise numbers not known
Number for CLP:Precise numbers not known
Other CFA:Precise numbers not known

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:CFSGBI

Useful websites or links

Useful websites or

Total number of cases per annum

Total cases per annum:~150