Early Career Researchers Group / Cleft Multi-Disciplinary Collaborative
Overview of organisation
The Early Career Researchers Group (ECRG) and Cleft Multi-Disciplinary Collaborative (CMC) exist to expand and enhance the opportunities for its members to engage with high quality research and quality improvement projects, benefiting NHS Trusts and ultimately our patients. Membership is open to all disciplines involved in cleft care, regardless of an individual’s clinical or research experience. Currently, we have members from across the cleft related disciplines with the majority in SLT and surgery. Current membership stands at about 25. We encourage members from any cleft related sub-specialities, for example nursing and psychology.
The Early Career Researchers Group first met in February 2016 as part of the Cleft and Craniofacial Conditions Clinical Studies Group strategy to develop research in cleft and craniofacial conditions. It is recognised that high quality research requires long-term commitment and investment in the development of clinicians interested in research from early in their career. It was felt that such individuals might benefit from meeting other similarly minded colleagues, providing them with the opportunity to discuss their research ideas, maximise opportunities for collaboration on projects, and gain feedback and support for how to take ideas forward to successful grant applications and ultimately completion of research projects. Cleft and craniofacial conditions are relatively rare and require broad multidisciplinary and long-term care. Systematic reviews show very little high quality evidence for cleft and craniofacial care. Delivering high quality evidence will take time, and needs collaboration and multicentre participation. This in turn requires that there is a cohort of developing trained clinical researchers in the cleft and craniofacial teams, who are keen to pursue clinical academic careers.
The Cleft Multi-Disciplinary Collaborative, is a sub-group of the Early Career Researcher's Group, and is open to all members of the cleft multi-disciplinary team (plastic surgery, oral and maxillofacial surgery, dentistry, orthodontics, speech and language therapy, psychology, nursing, genetics, ear nose and throat) who are interested in cleft research. They CMC allows participation in multi-centre research but without the need for a particular individual to necessarily be involved in establishing the project and completing the necessary research documentation or gaining ethical approval. Many members become involved in active data collection to contribute to ongoing national projects.
Aims of the ECRG / CMC
The Early Careers Research Group aims to:
- develop a network of cleft/craniofacial clinicians currently early in their research careers who are keen to develop and/or lead in research in their field.
- provide support, advice and information about research career pathways and opportunities.
- help develop research project ideas into grant applications, funding and beyond.
- encourage exchange and development of ideas
- promote multidisciplinary ideas and projects
- promote collaboration between centres and on multicentre projects.
- develop support in centres for delivering research projects
- access academic support and guidance from the Cleft Researchers at the University of Bristol and other academic institutions
The Cleft Multi-Disciplinary Collaborative aims to:
- allow interested individuals to participate in robust, multi-centre cleft research
- ensure projects are managed and coordinated by experienced researchers
- ensure all contributors are joint authors which is PubMed searchable in any publications
- produce tangible and meaningful results which improve cleft care across the UK and the globe
Examples of progress made or particular achievements
Current Projects
Scoping Review of Outcomes for Children with Bilateral Cleft Lip and Palate
Current status:
This project is currently at final stage of screening. We will shortly be defining data to be collected and sharing the papers among different professions to bring the data together. Plans are to present at the International Cleft Meeting in 2022 and write up for publication.
Outcomes for Robin Sequence (RS)
Current status:
- Presented at ECPCA, Utrecht, June 2019
- 10 centres involved in UK, Melbourne, Denmark and Vancouver
- Other international centres being enrolled
We are looking to describe a group of RS patients born between 1st January 2005- 31st December 2009. The definition as laid out by the international consensus – micrognathia, glossoptosis, airway difficulties (+ cleft palate in our case). We would like to capture basic demographics, treatment details (for example, airway management, feeding methods, age of cleft repair, requirement for revisional surgery), and then record speech outcomes at 18 months (18-24 months), 3 years, 5 years and 10 years (where available); 5-year speech outcomes has been chosen as the primary outcome measure.
Assessing Learning Curve in Palatal Surgery using a Sommerlad Radical Intravelar Veloplasty
Current Status:
- Proposal being finalised
- Submitted for peer review by the NIHR Cleft and Craniofacial Conditions Clinical Studies Group
Aims:
- To identify if a learning curve can be observed among surgeons performing a Sommerlad style palate repair
- Does the training pathway taken affect the learning curve?
Impact of the COVID Pandemic on Cleft Surgery
Primary Objective:
- To determine the impact of the COVID pandemic, on elective cleft surgery timings and outcomes.
Secondary Objectives:
- Study individual units screening processes, screening outcomes and their impact on clinical decision making regarding timing of surgery
- To determine prevalence of COVID positive tests in infants (and parents where testing is done as part of unit protocols)
- Incidence of post-operative complications
- Impact on patient follow up (remote or in person)
- Duration to return to usual protocol timelines
- Surgeons’ reports of challenges of wearing PPE and operating with loupes/headlight/microscope
Current status:
- Study has been peer reviewed and is supported by the NIHR Cleft and Craniofacial Conditions Clinical Studies Group
- Funding granted from the Edinburgh Clinical Trials Unit for managing the RedCAP database
- Endorsed by the Royal College of Surgeons of England
- Data collection to date:
- 8 units entering data
- Over 600 operations details entered
- To close on 7 June 2021
Delphi Fistula Project
Current Status:
- Round 1 of Delphi Survey completed
- Round 2 to commence soon
- 35 members for expert panel
- 14 cleft consultants
- 6 SLTs
- 6 Cleft specialist nurses
- 3 Paediatric Dentists
- 6 Orthodontists
The aim of this study is to provide a consensus opinion on how Cleft Teams in the UK report fistulae. An expert panel was invited to complete a short series of surveys, with results anonymised, to demonstrate an unbiased consensus opinion. The questions will not primarily be designed to give all answers to the many questions fistulae pose, but more to provide as close to a robust minimum data set as can be achieved.
Completed projects
The Cleft Multi-Disciplinary Team Collaborative: Establishing a multidisciplinary network to support cleft lip and palate research in the United Kingdom. Sainsbury DCG, Davies A, Wren Y, Southby L, Chadha A, Slator R, Stock NM; Cleft Multidisciplinary Collaborative. Cleft Palate Craniofac J 2019;56(4):502-507.
Non-Interventional Factors Influencing Velopharyngeal Function For Speech In Initial Cleft Palate Repair: A Systematic Review Protocol. Sainsbury D, Williams C, Blacam C, Mullen J, Chadha A, Wren Y, Hodgkinson P. Systematic Reviews 2019 8:261
A Closer Look at the Reasons for Delayed Primary Cleft Surgery and Unrepaired Cleft Lip and /or Palate in Five UK Cleft Centres. Sophie Butterworth, Clare Rivers, Marnie Fullarton, Colm Murphy, Victoria Beale, Jason Neil-Dwyer, Simon Van Eeden, Stephanie Van Eeden, Peter D. Hodgkinson, Alistair Smyth, David C. Sainsbury. Accepted for publication in Cleft Palate Craniofac J May 2021
Opportunities to get involved
If you wish to get involved in a project, have an idea for a project, or simply with to attend one of the ECRG meetings please contact us via the email addresses below.
ECRG meetings are held 2 to 3 times a year. Email stephanie.vaneeden@nhs.net for further information.