Paediatric European Digestive Diseases Clinical Research Network (PEDDCReN) Survey
Tuesday, 10 December 2013 14:20
Nick Croft, Julian Thomas, Nikhil Thapar (UK Members of the PEDDCReN Steering Group) and Varsha Tailor (PEDDCReN Project Manager) invite you to participate in a 5-minute survey that will allow the project team to identify the interests of the departments across Europe, in order to determine what expertise and resources are available for setting up and running clinical trials in this speciality. For further details and access to the survey itself, please click here.
Paediatric European Digestive Diseases Clinical Research Network – PEDDCReN
Tuesday, 12 November 2013 15:01
PEDDCReN is an exciting new initiative with the key aim of forming a clinical trials network to study (and ultimately provide) effective medicines for paediatric patients in the speciality of Gastroenterology, Hepatology and Nutrition. It was established with the support of LINKS funding from the UEG and is led by the BSG in collaboration with various European societies and ENPR-EMA (The European Network of Paediatric Research at the European Medicines Agency). The project will support both industry and non-industry investigators in running high quality multi-centre clinical trials and your involvement is welcome.
- Further information [ 89 kb ]
The transition of adolescents with chronic gastrointestinal disease from paediatric to adult care
Wednesday, 17 April 2013 06:55
Introduction: The transfer of care of patients with chronic conditions from paediatric to adult services is a time of risk for optimal disease control / adherence to medication / patient satisfaction and quality of life. Appropriate transition services aim to reduce the risk during the transfer of care by educating the patient and their family about the disease and its optimum management and providing a structure of care that reduces the risks discussed above. There are several chronic gastroenterological diseases that require appropriate transition including Inflammatory Bowel Disease, viral and autoimmune liver disease and chronic neuro-gastroenterological conditions.
Aim: To provide an evidence based guideline that documents the risks of poor transition, the benefits of appropriate transition, and assesses the available models of care. The guideline would be used by the entire MDT involved in the care of adolescents with chronic GI disease. Where evidence is not available the guideline will make consensus based recommendations.
Scope: There are currently no clinical guidelines that assess in detail the most appropriate means of transition for adolescents with chronic GI disease. Therefore the scope of this guideline would be to:
- Describe the patient populations
- Document the evidence defining the risks of poor transition
- Document the evidence that appropriate transition improves patient outcome
- Describe the available models
- Assess the evidence supporting use of specific models
- Review the patient perspective of transition
Participants: The guideline committee will have representation from:
- Adult and paediatric gastroenterology
- Adult and paediatric Hepatology
- Adult and paediatric GI surgery
- Adult and paediatric IBD nursing
- Professionals involved in transition in another disease area (eg rheumatology)
- Patient bodies such as Crohn's and Colitis UK
Methodology: The guideline will be produced in accordance with the AGREE document. Working groups will be established to address each sub section (ie IBD / Hepatology). A literature search will be performed; the quality of manuscripts would be assessed according to the SIGN criteria before they were accepted. Statements will be produced and evidence levels will be graded using the Oxford Classification of Evidence Based Medicine.
For the development of the transition guideline relevant questions on each of the topics will be devised by the Chairs and their working parties. The questions will focus on current practice and areas of controversy. In parallel, the working parties will perform a systematic literature search of their topic as above. Statements on each topic will be written by the Chairs, based on answers from their working party, as well as the literature evidence and will be circulated first among their working party and then among all participants.
All working parties will meet to agree the statements. Technically this will be done by projecting the statements and revising them on screen until a consensus was reached. Consensus will be defined as agreement by >80% of participants, termed a Consensus Statement and numbered for convenience in the document. Each recommendation will be graded (RG) according to the Oxford Centre for Evidence Based Medicine, based on the level of evidence.
The final document on each topic will be written by the Chairs in conjunction with their working party. Consensus statements in bold will be followed by comments on the evidence and opinion. Statements are intended to be read in context with qualifying comments and not read in isolation. The final text will be edited for consistency of style.
Dissemination: the guideline will be published in line with the BSG Guidelines Committee Publication Strategy
New study to examine thre role of vitamin D in the progression of paediatric NAFLD
Monday, 26 November 2012 08:19
Children's Liver Disease Foundation (CLDF), the UK’s leading charity fighting childhood liver disease, is to fund a PhD student fellowship at the University of Surrey which will look at the role of vitamin D in the progression of paediatric non-alcoholic fatty liver disease (NAFLD), now recognised as the most common cause of childhood liver disease in the UK.
The £74,500 award will fund a three year study, to be led by Dr Bernadette Moore, a lecturer in molecular nutrition at the University, who will be working in collaboration with Kings College Hospital Paediatric Liver Clinic.
"We are thrilled that CLDF have agreed to fund this project which will enable us to find out more about a disease which is affecting increasing numbers of UK children," commented Dr Moore. "The incidence of paediatric NAFLD has risen sharply in past three decades, affecting an estimated 3–9% of all children and up to 70% of obese children."
"Whilst we know that people in the UK have low level vitamin D status during the winter due to the lack of sunlight, children with fatty liver disease have been shown to have particularly low levels and this deficiency is associated with more severe liver disease. This project will examine the diet and specific genes that can affect vitamin D levels in UK children with liver disease."
Action Medical Research - grants available
Wednesday, 21 November 2012 11:27
Action Medical Research are promoting their funding opportunities. In the latest round of funding, the charity has given out a total of £1,218,929 across nine different projects plus almost £600,000 for research training fellowships.
They are now offering funding for a wide range of research into rare diseases in children. They will be focusing on raising funds for research into necrotising enterocolitis over the next few months and their filed of work may be of interest to BSG members.
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