Shaping the future of research into cerebral palsy
Cerebral palsy is a chronic neurological condition that affects how individuals control their muscles and movements. It is usually caused by injury to the brain before, during or after birth.
One in 400 children born in the UK each year will have or will develop cerebral palsy. A new cross-Faculty research group, Cerebral Palsy Research (CPRes) has been established; the aims of which are to increase understanding of the causes and consequences of cerebral palsy, and to develop new, or enhance existing, supportive therapies for people with the condition. CPRes is led by Dr Nicholas M. Almond, a neuropsychologist who also has cerebral palsy, Dr Samit Chakrabarty, a neuroscientist interested in the brain’s control of movement, Dr Dave Lewis, a public engagement specialist, and Dr Rory O’Connor, a Consultant in Rehabilitation Medicine.
To ensure that the research the group undertakes is directly relevant, focused and addresses the needs of the cerebral palsy community, they held a one day workshop, attended by people with cerebral palsy, their family and carers, clinicians, healthcare professionals and researchers, to debate and discuss the future research direction and questions to be tackled by the group.
“I have an insight into life with CP that physicians/professionals do not”
(Person with cerebral palsy)
“People with Cerebral Palsy/carers are the experts in terms of how research might a) fit into life, b) affect person, c) be effective”
In a session facilitated by Dr Dave Lewis, CPRes’ public engagement expert, delegates split into small groups, each led by a person with cerebral palsy, to discuss amongst themselves the area(s) where they thought research funds and effort should be focused. The outcomes of their discussions were collated and will be used by the group to direct their future research. We will continue to work in partnership with this community to shape our research as it develops and to engage the wider public with its outcomes.
Patient and Public Involvement (PPI) groups such as this are increasingly being used by Government and funding agencies in deciding clinical care priorities and in identifying or prioritising strategic research areas. Whilst their use in clinical research is widespread, to date, their use within the Biological Sciences is extremely limited. It is an approach that colleagues who undertake translational research in other areas of the biological sciences may wish to consider.