Cleft & Craniofacial Conditions Clinical Studies Group
WHAT WE OFFER
Using a wide range of expertise, we can:
- Help you develop your research proposals
- Assess study feasibility
- Provide expert advice
- Ensure parent representation in all activities
- Direct applicants to funding advice and funding opportunities
Cleft & Craniofacial Conditions CSG
We are responsible for developing and overseeing a comprehensive portfolio of clinical trials and related studies covering the full spectrum of craniofacial anomalies including cleft lip and/or palate.
The Cleft and Craniofacial Conditions CSG is one of 14 CSGs (see box below) which have been established by CRN: Children. Our CSG covers children with congenital craniofacial anomalies. We are a fully integrated group with representatives from supra regional craniofacial and regional cleft lip/palate teams. The group includes consumers, speech and language therapists, specialist nurse, clinical psychologists, paediatricians, surgeons, geneticists, orthodontists and active researchers. Representatives of CRN: Children, the Craniofacial Society of Great Britain and Ireland, the Cleft Collective, Headlines Craniofacial Support (https://www.headlines.org.uk/), Microtia UK (http://www.microtiauk.org/) and CLAPA are also on the group.
OUR EXPERIENCE
- All research in craniofacial conditions and cleft lip and/or palate involving children in the UK can be reviewed by this CSG. A review can act as an external peer review which can be useful for both ethics and funding applications
- Encouraging and supporting applications (peer review etc) for new projects
- Identification of eligible participants and assessment of feasibility
- Advising on and identifying research priorities and opportunities (e.g. research priorities from NICE guidance)
- Advising PIs on the process and how to benefit from adoption on to the NIHR Portfolio
- Assessment of studies and encouragement of adoption for the NIHR Portfolio
- Liaising with and advising industry (e.g. Paediatric Investigation Plans (PIPs))
- Providing patient and carer feedback on proposals
- Encouraging and supporting trainees wishing to pursue research and academic career pathways
- Communication with clinical centres
NATIONAL INSTITUTE FOR HEALTH RESEARCH CLINICAL RESEARCH NETWORK: CHILDREN
The National Institute for Health Research (NIHR) Clinical Research Network (CRN) provides researchers with the practical support they need to make clinical studies happen in the NHS, so that more research takes place across England, and more patients can take part. We work collaboratively with our counterparts in the Devolved Nations where similar arrangements exist to support clinical research.
The Children Specialty is one of 30 specialties which bring together communities of clinical practice to provide national networks of research expertise. It is made up of research-interested clinicians and practitioners who work at both national and local levels to ensure the studies that are included in our national portfolio of research are delivered successfully in the NHS. By “successfully” we mean ensuring that studies recruit the right amount of patients within planned timescales.
WE SUPPORT AND DELIVER CLINICAL RESEARCH INVOLVING CHILDREN THAT INCLUDES:
- Clinical trials
- Randomised controlled trials and other high quality research of new and established medicines for children
- Screening, diagnosis and the development of prognostic tools including imaging interventions such as behavioural interventions and medical devices
- Studies on normal development and the pathogenesis, monitoring and prevention of disease
- Cohort studies and the effect of lifestyle factors such as diet, nutrition and exercise
CRN: CHILDREN CSGS
- Allergy, Infection and Immunity
- Anaesthesia, Intensive Care and Cardiology
- Cleft and Craniofacial Conditions
- Diabetes and Endocrine
- Gastroenterology, Hepatology and Nutrition
- General Paediatrics
- Inherited Metabolic Disorders
- Neonatal
- Nephrology
- Neurosciences
- Pain and Palliative Care
- Pharmacy and Pharmacology (including Paediatric Formulations and Pharmacokinetics)
- Respiratory and Cystic Fibrosis
- Rheumatology
GET INVOLVED WITH THE CLEFT & CRANIOFACIAL CONDITIONS CSG
Please contact csg.crnchildren@nihr.ac.uk or sarah.kilcoyne@ouh.nhs.uk if you:
- Would like advice on study development, at any stage but in particular at the initial stage of planning the research design
- Are interested in becoming a member
DOWNLOAD THE CSG STUDY SUBMISSION FORM
MORE INFORMATION
To find out more information about what the Cleft & Craniofacial Conditions CSG can offer you contact:
Email: csg.crnchildren@nihr.ac.uk or sarah.kilcoyne@ouh.nhs.uk
Phone: 0151 282 4709
Web: www.crn.nihr.ac.uk/children
NIHR CRN: Children
University of Liverpool
Department of Women's and Children's Health
Institute of Translational Medicine (Child Health)
Alder Hey Children's NHS Foundation Trust
Eaton Road
Liverpool
L12 2AP