- Support the work of CP Registers and Surveillance Programs
- Connect investigators to enable data sharing
- Provide standardised data collection tools and outcome definitions to support prospective and longitudinal data collection that can be more easily shared, compared and pooled
- Explore opportunities for collaborative research
- A coordinated effort to seek funding and provide seed funding as resources become available
In 2007 a Delphi survey identified researchers, clinicians, and consumers’ priorities for cerebral palsy research (1). During the 2011 Summit in San Francisco, a structured and facilitated research priority setting activity was undertaken. The aim of the activity was to update and build on the cerebral palsy research priorities already published. Delegates used a 7-point Likert scale to rate the priority of fifty-four research questions identified in literature and from delegate pre-summit survey responses. A rating of seven meant the delegate rated the issue as a very high priority. A rating of six denoted high priority, a rating of five denoted fairly high priority, and a rating of four denoted a topic area that was neither low nor high priority. Ratings of 1-3 referred to low/non-priorities and are not reported here. Twenty-six questions were rated as a priority. The research priority areas are listed below in topic themes and are ranked in order of priority agreement, with the highest priority first.
It is expected that research priorities will continually change as evidence is established.
- How can endogenous repair pathways be enhanced?
- Experimental research addressing the importance of the delayed phase (days-weeks) and the possibilities of intervention in the delayed/tertiary phase
- What are the mechanisms of neuroregeneration?
- What neuroregeneration strategies can be developed?
- What value can stem cells have for this population?
- What new strategies for term babies will augment hypothermia?
- What are the most effective early intervention strategies?
- Can early intervention (therapy) augment cellular therapies following discharge from hospital?
- Do we have the tools (registers) to identify reductions and increases in the frequency of CP? How can we best combine databases to increase accurate surveillance?
- What tests can be developed to identify placental abnormalities?
- What strategies are available [e.g. a research network] to promote collaboration across disciplines [e.g. animal models, obstetrics, neonatal, epidemiology] and to share data when/if appropriate?
- Can a gold standard classification system of cerebral palsy based on underlying pathology be developed and agreed on?
- Can a consensus be reached on placental procedures, terminology and interpretation of pathology?
- Can a classification system/set of comprehensive definitions be developed to provide consistency of reporting of neuroimaging data, to promote better collaborative research opportunities and analysis?
- How do we ensure translation of research findings to practice?
- What strategy can be used to drive forward aetiological research by combining epidemiology with genetics, basic science and other disciplines to identify causal pathways?
Focus on timing:
- What are the pathways to CP for those born at term without NE?
- How can we maximise neurodevelopmental outcome for babies born with perinatal hypoxic-ischaemic injury secondary to intrapartum asphyxia?
- Do risk factors in the antenatal period reduce a baby’s tolerance to perinatal asphyxia?
- What are the most effective public heath strategies to reduce postnatal CP?
- To what extent can CP be prevented in developing countries through the improved management of childhood illness?
- How can perinatal stroke be prevented?
- What can be done to enhance our understanding of the aetiology of cerebral palsy?
- How can we identify cerebral palsy earlier?
- McIntyre, S., Novak, I., & Cusick, A. (2009). Consensus research priorities for cerebral palsy: A Delphi survey of consumers, researchers and clinicians. Developmental Medicine and Child Neurology DOI: 10.1111/j.1469-8749.2009.03358.x