No. of Cases Seen in a Year

  • Total Referrals: 150
  • Unilateral cleft lip and palate: 30
  • Bilateral cleft lip and palate: 10
  • Cleft palate only: 80
  • Pierre Robin Sequence: 10

Treatment Funded by State for National Residents

  • Surgery costs: All
  • Speech and Language Therapy costs: All
  • Orthodontic costs: All

Comment on the service provision:

But restricted local SLT depending on age and address - Speech & language therapy

Primary surgical protocol


Cleft Lip Repair:

  • Timing: 3 months
  • Type of operation: Lip, Nose, vomer to hard palate

Bilateral Cleft Lip Repair:

  • Timing: 3 months
  • Type of operation: Lip adhesion, Nose, vomer

Cleft Palate Repair:

  • Timing: 7 - 9 months

Record collection protocol


Are records routinely collected at specific ages? Yes

Does this conform to WHO recommendations for different cleft types? Yes

Intercentre Collaboration Interested


Research

Want to particpate in research? yes

Participation in inter-centre studies?

Current Research

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

CLINICAL Research activities you would be happy to become involved in:

Randomised clinical trials?

Inter-centre comparison of outcome?

Prospective cohort studies?

DNA collection?

LABORATORY based research you would be happy to be involved in:

Laboratory genetics/genomics research

Animal models research

Clinical research activities interested in being involved in:

Randomised clinical trials: Yes
Inter-centre comparison of outcome: Yes
Prospective study: Yes
DNA collection: Yes





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

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 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