North Thames Cleft Centre (GOSTA)
Principle contact details
| Contact name: | Mr. Guy Thorburn |
| Address: | Great Ormond Street Hospital Great Ormond Street London WC1N 3JH |
| Country: | United Kingdom |
| Telephone: | +44 20 7829 7922 |
| Email: | Guy.Thorburn@gosh.nhs.uk |
| Web address: | Visit website |
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 www.clapa.com |
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)? | 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: | 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 http:www.craniofacialsociety.org.uk |
Useful websites or links
| Useful websites or links: | www.gosh.nhs.uk www.meht.nhs.uk |
Total number of cases per annum
| Total cases per annum: | ~150 |