Childhood Disability Research Priority Setting Partnership
MAKE SUGGESTIONS FOR RESEARCH - SURVEY OPEN! The survey to identify your research ideas can be accessed and completed at https://www.research.net/s/JLACDRPSP_researchideas
If you prefer, you can use this Word document which can be either emailed or posted back to us Aims and objectives The aim of the Childhood Disability Research Priority Setting Partnership (PSP) is to identify the unanswered questions about the effectiveness of interventions for children and young people affected by neurodisability from both patient and clinical perspectives. Then to prioritise those unanswered questions that young people, parents and clinicians agree are the most important to create a ‘top 10’ important research topics. The objectives of the Childhood Disability Research PSP are to:
What is ‘neurodisability’? For the purposes of this project: "Neurodisability describes a group of congenital or acquired long-term conditions that are attributed to impairment of the brain and or neuromuscular system and create functional limitations. A specific diagnosis may or may not be identified. Conditions may vary over time, occur alone or in combination, and include a broad range of severity and complexity. The impact may include disturbances of movement, cognition, hearing and vision, communication, emotion and behaviour." [For background to this definition click here] What sorts of issues are included? Any ways to improve the health and/or wellbeing of children with neurodisability about which there is uncertainty of effectiveness. This includes medical and social interventions, mainstream and complementary and alternative therapies, or different ways of providing services; included are anything we could modify in the environment to improve these young people's health (see notes in the glossary for further clarification). Background to the Childhood Disability Research PSP One of the key aims of the British Academy of Childhood Disability (BACD) Strategic Research Group is to encourage and assist families, young people and clinicians to identify the research priorities for children and young people affected by neurodisability. The James Lind Alliance (JLA) brings patients, carers and clinicians together in specific conditions to identify and prioritise the top 10 'unanswered questions', about the effects of treatments that they agree are most important. The top 10 'unanswered questions' are then perceived as a priority for research. The JLA calls this sort of activity a ‘Priority Setting Partnership’. A proposal by the Strategic Research Group for a Childhood Disability Research Priority Setting Partnership was considered by the BACD Executive Committee in Spring 2012. BACD have allocated a small resource from the Paul Polani Fund to run a Childhood Disability Research PSP, following the JLA methods and focusing on ‘neurodisability’. |
Useful Information Partner Organisations
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