A new research initiative looking at how severe adverse health outcomes for children with spina bifida are effected by health and social inequality over the UK, is looking for members to join a steering group.
The steering group would include every member of the allied health professional team that cares for children with spina bifida from conception to critical care and childhood.
The research is being led by Dr Kate Parmenter, a Clinical Research Fellow at Leeds Children’s hospital and a paediatric speciality registrar. Kate says: "I am currently preparing to apply for a doctoral fellowship so I can learn more about how severe adverse health outcomes for children with Spina Bifida are effected by health and social inequality over the UK. I hope this will inform many beneficial clinical care outputs, benchmark regional trends in practice and provide the evidence to produce a national framework of best practice.
"I would like to obtain access to the data for all children born with Spina Bifida within the UK over a five-year period. The data supplied will be linked to National Congenital Anomaly and Rare Disease Registration Service data (a novel linkage) for the same time period to produce a timeline from conception to birth and then define early life years progress of these children. This will allow benchmarking of the current national situation of care structure and provision, will look at regional trends in accessing antenatal care and termination discussions, assess variation in care practice and identify risks for severe adverse life outcomes as defined by mortality or PICU admissions within the first two years of life."
Members of the steering group we would meet virtually for an initial hour to discuss the project. They would then meet regularly to review the findings of the project and help shape a framework of guidance to feed into national steering groups that inform NHS England.
How to get involved
Please express your interest to help by emailing on [email protected]