Research Questions Needing Answers

Fri 26 Apr 2024

The second part of this Science Spotlight focuses on the specifics and potential treatment of dystonia for people with cerebral palsy.

Thu 11 Apr 2024

In the first part of our newest Science Spotlight blog, learn how scientists can harness electricity to help with movement disorders that sometimes accompany cerebral palsy.

Research Questions Needing Answers

The complexity of cerebral palsy means there could potentially be many ways we can diagnose, treat, prevent and cure the condition.

This is why it’s important we support the work of researchers representing a wide range of disciplines.

To help us find the answers in our lifetime, we need to focus on research that addresses the following questions.

Families and Individuals want to know
Prevention/cure
  • How can cerebral palsy be prevented?
  • What are the causes of and causal pathways to cerebral palsy?
  • What potential does the brain have to repair injury?
  • Can stem cells have a therapeutic effect for cerebral palsy?
Quality of life/community participation
  • What policies are needed to improve quality of life for families caring for a loved one with a disability?
  • What are the barriers to employment for people with cerebral palsy?
  • What is the relationship between cerebral palsy and poverty?
  • Can people with cerebral palsy equitably access the community?
Service provision
  • What can be done to address the mismatch between the services people need and actually receive?
  • What is the optimal intensity of therapy programs?
  • What is the most efficient service model to maximise the reach of services for people with cerebral palsy?
Intervention – Effectiveness & Outcomes
  • What are the optimal treatments for cerebral palsy?
  • What are the long term outcomes of treatment?
  • What is the effectiveness of alternative therapies in the treatment of cerebral palsy?
  • What early interventions (dependent on type of cerebral palsy) will prevent and minimise structural impairments?
  • Does physiotherapy benefit people with cerebral palsy?
  • What are the most effective methods of pain management to reduce impact of secondary
    complications?
  • What is the effectiveness of hydrotherapy?
Intervention – Role of Families
  • What are the most effective methods of education parents to help improve their child’s independence and function?
  • What is the impact of therapy type and duration on parents of a child with cerebral palsy?
  • Is hands-on treatment by therapists a more effective method than guided therapy by parents?
Intervention researchers/clinicians want to know
Effective Outcomes Function & participation
  • What are the most effective interventions for improving participation and quality of life?
  • What interventions deliver the biggest functional gains?
Relationships
  • What strategies assist people with cerebral palsy to develop friendships and relationships?
Long Term Outcomes
  • What interventions produce the best long-term outcomes?
  • What are the most effective equipment and devices for improving independence and quality of life long-term?
  • What is the long-term safety and impact on function: participation and quality of life of medical interventions that reduce spasticity?
Coping
  • What family support strategies best reduce family stress and promote coping?
  • What interventions promote self-esteem?
Employment
  • What service factors improve the likelihood of people with cerebral palsy gaining employment?
Prevention of Deformity
  • What are the safest and most effective surgical interventions to improve skeletal alignment and function?
  • What is the effectiveness of orthoses for improving function and preventing secondary deformity?
  • What is the most effective way to prevent hip dislocation?
  • What are the best ways to prevent the secondary impairments and injuries?
Physical Potential
  • What is the best way to maximise mobility?
  • What physical activity programs best improve function and fitness?
Effective Research/Services Service Models
  • What is the optimal intensity of therapy programs?
  • What models of service, policies and education program best support transition?
  • from paediatric to adult services?
  • What are the differences in outcomes when services are provided by allied health vs parent vs community volunteers?
  • What affects client satisfaction and service uptake?
Measurement &

Methodologies

  • What is the best research method to evaluate the relative contribution of the therapies, orthoses and medical interventions?
  • What instruments measure the effectiveness of cerebral palsy intervention and what is the sensitivity of these measures?
  • What are the most efficient ways to establish and maintain cerebral palsy registers to facilitate research?
Aetiology and prevention researchers want to know
Infection / Inflammation
  • What is the association between altered fetal inflammatory response in cerebral palsy mothers and infants and cerebral palsy?
  • Are cytokines markers of infection or ischaemia?
  • What are the infectious agents involved in pregnancy that are strongly linked to cerebral palsy
  • Does earlier recognition of maternal infection lead to reduced incidence of HIE?
  • Does cytokine elevation correlate with severity injury?
  • What are the molecular and cellular mechanisms that explain the epidemiologically observed association between chorioamniotis and greater risk of cerebral palsy?
  • How can TORCH infections be reduced?
  • How can chorioamnionitis in pregnancy be identified, treated and prevented? Who is most at risk?
  • Does intra-uterine infection and fetal inflammatory response affect the fetal brain?
  • Do viral and bacterial exposure/infection interact with genetic factors or know major risk
    factors IUGR, prematurity, multiple birth, ante partum haemorrhage on a pathway to cerebral palsy?
  • What are cytokines roles in brain development, pregnancy and inflammatory homeostatis?
Focus on Timing
  • Do pathways to pre-term differ in the ways they predispose to brain injury?
  • To what extend can cerbral palsy be prevented in developing countries through the improved
    management of childhood illness?
  • What are the predictors and risk factors of cerebral palsy in term infants (from socio economic to neonatal health)?
  • How can severe encephalopathy be reduced to moderate and moderate reduced to mild?
  • Is both infection and acidosis required in term infants to cause cerebral palsy?
  • What are the most effective public health initiatives to reduce post natal cerebral palsy?
  • What therapeutic drugs reduce the severity, if not stop the destruction of oligodendrocytes in PVL?
  • What are the causes of neonatal encephalopathy?
Haematology
  • How do disorders of coagulation (fetal and maternal) affect the fetal brain?
  • What postnatal medications best reduce the risk of severe IVH?
  • What are the underlying mechanisms of prenatal hypoxia/inflammation that result in brain damage
  • How can perinatal stroke be prevented?
Research Tools
  • Do we have the tools (registers) to identify if we start to prevent cerebral palsy?
  • How can we best combine data bases to increase accurate surveillance?
  • Can a gold standard classification system of CP based on underlying pathology be developed and agreed on?
  • How can the timing of lesions be most accurately identified?
  • What strategy can be used to drive forward aetiological research by combining epidemiology with genetics, basic science and other disciplines to identify causal pathways?
Neuro regeneration
  • Do neuroprotective interventions change severity and functional outcomes?
  • What are the mechanisms of neuro-regeneration?
  • How can we maximise neuro-developmental outcome for babies born with perinatal hypoxic-ischaemic injury secondary to intrapartum asphyxia?
Genetics
  • What are the maternal and fetal immune, clotting, and immune response genetic factors predisposing to cerebral palsy?
  • Do genetic factors play a role in neonatal encephalopathy?
  • What role do thrombophilic risk factors have in the pathogenesis of cerebral palsy?

McIntyre, S., Novak, I., Cusick, A. (2010). Consensus research priorities for cerebral palsy: a Delphi survey of consumers, researchers, and clinicians. Developmental Medicine and Child Neurology, 52(3), 270-5 (doi: 10.1111/j.1469-8749.2009.03358.x).
https://www.ncbi.nlm.nih.gov/pubmed/19694780