Research plays an important role in improving the lives of all those affected by a childhood lower limb condition.
As the national charity working for all those whose lives are affected by childhood lower limb conditions, Steps perform a vital patient advocacy and recruitment role in research projects.
Steps play an active role in Public Patient Involvement (PPI) for a variety of research projects concerning lower limb conditions. This includes;
- as joint grant holders or co-applicants on a research project
- involvement in identifying research priorities
- as members of a project advisory or steering group
- commenting and developing patient information leaflets or other research materials
- undertaking interviews with research participants
We assist researchers investigating the challenges facing children and adults affected by conditions of the hips, legs and feet and the clinicians treating them in several ways;
- Advise on accessibility of research for the wider community, from the onset of the research proposal process.
- Help to recruit, support and inform families involved in the research process.
- Put forward the points of view of affected families and communicate their perceived challenges to researchers.
- Work towards forming research partnerships with hospitals and universities across the UK and ultimately worldwide.
- Form collaborations to identify the unanswered questions in paediatric lower limb research.
James Lind Alliance Priority Setting Partnership;
Paediatric Lower Limb Surgery Group
The JLA process brings patients, carers and clinicians to work together to:
- Identify unanswered questions about treatment options for children who present with bone and joint conditions affecting the lower limb
- Prioritise research questions
- Produce a ‘top ten’ list of agreed research priorities
Please submit any questions you have to our very quick survey: http://goo.gl/dtKskq.
Further information on this exciting project can be found at https://www.ndorms.ox.ac.uk/research-groups/paediatric-lower-limb-surgery
Starworks Innovation Project
Starworks is the young people’s prosthetics research collaboration, bringing children and their families together with key opinion leaders from the NHS, Industry, Clinical Academia and leading National Research Centres with capabilities in child prosthetics.
The project is funded by the Department of Health and has built a collaboration which aims to increase research across the system to help turn ideas around improving child prosthetics into ‘real world’ innovations for everyday use.
Steps participated in a the ‘sandpit’ events, aimed at producing ideas for ‘proof of concept’ funding, to develop new and innovative ideas. Steps were part of a successful team, awarded ‘proof of concept funding’ for the project below;
A novel Socket Interface Monitoring System (SIMS) to guide socket fitting for growth in lower limb child amputees
The high growth rate of children means that children who have lower limb loss also require prosthetics that can match their rate of growth. This creates a significant problem as it means that a “new” socket might be needed very often, just like children go through many pairs of school shoes due to growth spurts. Once a prosthetic socket is fitted to a child, it may soon be too small, and if left unaddressed may lead to skeletal development problems. This project aims to develop a system called SIMS (socket interface monitoring system), which will use a system of sensors in the socket and a smartphone app to help identify the correct time for socket adjustments. The aim is to help ensure children always have good fitting and comfortable prosthesis so that they can participate fully in normal lives and most importantly have fun!
Project lead: Professor Liudi Jiang
Expected start and end date of the project: March 2018 to December 2018
For more information, please contact: firstname.lastname@example.org
Further information on this exciting project can be found at https://devicesfordignity.org.uk/starworks_cp/starworks_poc/
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 http://boss.surgery/#about
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.