The Welsh Centre for Cleft Lip and Palate are actively involved in audit and research programmes. We may invite you/your child to take part in these research projects. This will help support our understanding and help us to develop the best possible treatment and support. Please see more information about some of the audit and research programmes we are involved in:
The Cleft Registry and Audit NEtwork (CRANE) database collects information about children born with cleft lip or cleft palate (or both) in England, Wales and Northern Ireland. It was set up by the Department of Health to look at the quality of care for people with a cleft lip and palate. The database is funded by the National Health Service.
The information collected in the CRANE database is used to:-
get an accurate picture of the number of babies born with cleft lip and cleft palate and the different types of care that are provided;
help monitor the performance of the hospitals that treat children with cleft lip and cleft palate;
produce reports which highlight areas of good care so that this knowledge can be shared; and
help to find the best treatments for cleft lip and cleft palate.
The CRANE Project Team manage the CRANE database. They are based in the Clinical Effectiveness Unit of The Royal College of Surgeons of England (RCS) in London and are overseen by the Cleft Development Group (CDG), a panel of people responsible for the way the database is run. This group includes the Cleft Lip & Palate Association (CLAPA), representing patients and parents.
Please follow this link to the CRANE website for more information
Please follow this link to read the CRANE 2020 Annual Report
Follow this link to access the CRANE leaflet for more information
The Cleft Collective is a UK wide research programme funded by the UK charity, The Healing Foundation. The Cleft Collective aims to help answer these three questions:
What caused my baby’s cleft?
What are the best treatments for my baby?
Will my baby be OK as he/ she grows up?
The Cleft Collective hopes to answer these questions by working with families, and gathering information when babies are born and at their 5-year review. Our Cleft Nurses will discuss with you whether you would like to take part. More information can be found by following this link to the Cleft Collective leaflet or watch the short youtube video:
TOPS stands for the “Timing Of Palatal Surgery”. This study is an international randomised control trial which aims to investigate the impact of the timing of surgery for cleft palate repair on speech development. We are one of many Cleft Centres in the UK and around the world who have taken part. Babies around the world either had their surgery at 6 months or 12 months and are being followed up at age 12 months, 3 years and 5 years when speech, hearing and physical development are being reviewed. The main objective of this trial is to find out whether the timing of the cleft palate surgery has an influence on speech development.
Sharon Baker, Deputy Lead and Specialist Speech and Language Therapist was involved in the following research paper:
Baker, S., Wren, Y., Zhao, F. & Cooper, F. (2021) ‘Exploring the relationship between conductive hearing loss and cleft speech characteristics in children born with cleft palate’ International Journal of Pediatric Otorhinolaryngology Volume 148
Miss S Davis, Ear Nose and Throat Consultant, was involved in the following research paper:
Ardouin, K. Davis, S. Stock, NM. 2020. ‘Physical Health in Adults Born With Cleft Lip and/ or Palate: A Whole of Life Survey in the United Kingdom’. The Cleft Palate-Craniofacial Journal. July 2020.pp 1-10.
Helen Extence, Clinical Director and Lead Speech and Language Therapist was involved in the following research papers:
Britton, S, Calladine, S, Extence, H, Phippen, G, Pinkstone, M. (2017). ‘Inequities in Speech and Language Therapy provision for children with Cleft Palate’. RCSLT Bulletin. October, pp12-15
D, Drake. Extence, H. Jones, J. Waldron, J.(2015). ‘Outcome of palate re-repair for Velopharyngeal Dysfunction in the cleft palate patient’. British Journal of Oral and Maxillofacial Surgery. Volume 53 (10), e122-e123.
D, Drake. Extence, H. Wells, JP. (2017). ‘An analysis of speech outcomes in 70 consecutive repairs of sub-mucous cleft palate’. British Journal of Oral & Maxillofacial Surgery. Volume 55. Issue 10, pp991-1050.s
Extence, H. (2015). (Lorraine Britton 2014) ‘A cross- Sectional Cohort Study of speech in 5 year-olds with cleft palate to support development of National audit standards’. RCSLT Bulletin. June.
Helen Extence, Clinical Director and Lead Speech and Language Therapist and Siwan Etheridge (nee Cassidy) Speech and Language Therapist were involved in the following book chapter:
Cassidy, S; Extence, H. (2017). ‘The role of the Speech Pathologist in the care of the patient with Cleft Palate’. Maxillofacial Surgery. Elsevier, 3rd Edition. (pp.1014-1023).
Helen Extence, Clinical Director and Lead Speech and Language Therapist and Rhian Hoccum Speech and Language Therapist produced this You Tube video:
Extence, H. Hoccum, R (2017). Early Intervention Babble Resource for Parents. (Accessed: 27/10/2020)
To watch the Early Intervention Babble Resource for Parents on YouTube, please follow this link.
Vanessa Hammond, Lead Clinical Psychologist was involved in the following research papers:
Vanessa Hammond, Nicola Marie Stock, Fabio Zucchelli, Nichola Hudson, Debbie Sell, 2022. Facilitators and barriers to delivering an optimal specialist service: an example from cleft lip and/or palate care
Edwards, Z. Hammond, V. Hearst, D. Owen, T, Ridley, M. Rumsey, N. Stock, NM. 2020. ‘Achieving Consensus in the Measurement of Psychological Adjustment to Cleft Lip and/or Palate at Age 8+ Years’. The Cleft Palate-Craniofacial Journal, vol. 57, 6: pp. 746-752.
Hammond, V. Hudson, N. Kiff, J. Stock, NM. Zucchelli, F. 2020. ‘Promoting Psychosocial Adjustment in Individuals Born With Cleft Lip and/or Palate and Their Families: Current Clinical Practice in the United Kingdom’. The Cleft Palate-Craniofacial Journal, vol 57: pp 186-197.
Hammond, V. Kiff, J. Owen, T. Rumsey, N. Shank, A; Stock, NM. 2016. ‘Achieving Consensus in the Measurement of Psychological Adjustment to Cleft Lip and/or Palate’. Cleft Palate Craniofacial Journal, vol 53(4): pp 421-6