Find out more about current research projects:
Understanding of the experiences of children and their families when being treated for Perthes disease
Adam Galloway, a paediatric physiotherapist and Visiting Academic Clinical Fellow at the University of Leeds, is contributing to a growing body of work researching the effectiveness of different surgical and non-surgical treatments.
Adam has secured funding from the National Institute for Health Research (NIHR) to complete a PhD to develop a digital rehabilitation programme of care in the form of an app which is accessible for all children with Perthes disease. The research is split up into three workstreams:
- Qualitative interviews with key stakeholders including, children, families’ clinicians, clinical nurse specialists, physios and surgeons to understand the current experiences of non-surgical care and identify gaps in non-surgical treatment.
- Developing an app in conjunction with NHS Digital which will enable people to access information about Perthes and allow children to log their exercise and other progress.
- Testing the app with a small group of patients and families, to assess how useful it is as a non-surgical treatment.
The overall aim of the research, which will last four years, is to develop a better understanding of the experiences of children and their families when being treated for Perthes disease. Working with organisations like STEPS helps Adam access patients and families affected by Perthes, ensuring the voices of those most impacted by the disease are included. This information, combined with the expert opinion of clinicians and the summary of existing evidence, will ensure that the decisions we make to treat children with Perthes in the future are the best informed.
British Orthopaedic Surveillance Study (BOSS)
Steps were invited to sit on the PPI advisory board of the BOSS study. The British Orthopaedic Surgery Surveillance (BOSS) Study is a nationwide reporting mechanism to determine the epidemiology (number of cases) and outcomes in rare orthopaedic diseases. The current study focusses on recording the number of cases of the rare childhood hip diseases Perthes and Slipped Capital Femoral Epiphysis (SCFE).
The aims of BOSS are to;
- Create an easy way for consultants to record cases of rare diseases though one mechanism.
- To help organise data in a way that will make future research projects easier to design
- To use the knowledge gained to make practical improvements in prevention and treatment of the conditions and allow for more effective service planning
- To lead onto future research and the development of randomised controlled trials
To find out more, please visit the BOSS website.
Genetic factors of hip dysplasia in children – Evaluation of an aid to diagnosis to congenital dysplasia of the hip in general practice
Steps were invited to act as the PPI stakeholder within a collaborative research project, led by Great Ormand Street Hospital and collaborating with University College London, University of Bedfordshire, PJK Informatics Ltd and Kings College London. The project aims to identify genetic factors which place a child at risk of hip dysplasia and aid early diagnosis.
Below is a synopsis of the project form the project lead Prof Andreas Roposch.
It is not understood what causes hip dysplasia, a condition originating in childhood and affecting the growth of the hip. We know that this condition can “run in families”, and we know that children are more likely to have hip dysplasia if one of their parent or an older sibling had it as well. The genes contribute somehow to the development of hip dysplasia, but it is not known exactly how. We want to explore whether the genetic make-up predisposes a child to having hip dysplasia, and how that make-up affects the development of the hip.
In 2011 we initiated a study in many UK hospitals where we collected saliva samples from children with hip dysplasia. From the saliva we extracted the children’s DNA (the part that contains the genetic information). Now that we have collected over 3000 such samples, we are able to move the next step of the research – analysing the DNA to find genetic factors linked with hip dysplasia.
This analysis will be conducted by looking at the whole genome of the children with hip dysplasia. We will then check what all the 3000 children have in common in their genetic-make up – and compare the results with individuals who do not have hip dysplasia.
The results of this analysis will inform us about genetic factors that place a new-born at risk for developing hip dysplasia. The results could also help us understanding why some children are at greater risk for their dysplasia to recur despite of treatment, or why some children don’t respond well to treatment.