Results, issues and perspectives
Research is useful only if applied to the life of those who need it.
The major absentee of research programs
Poorly defined for a long time, cerebral palsy still suffers today of a disproportionate lack of awareness compared to the number of people concerned, among the public as well as among medical and scientific bodies.
Therefore and because this pathology is at the crossroad of very varied disciplines (from pediatric neurology to robotics, not to mention cerebral imaging and cell biology), research on cerebral palsy is still missing out on large research programs. The vocation of the Fondation Paralysie Cérébrale is precisely to catch up with this lack – and delay compared to other pathologies –.
Progress is made but still insufficient
Since its creation in 2005, the Fondation Paralysie Cérébrale has launched calls for projects every year and supported 78 research works. From this work resulted the accompaniment or acceleration of important advances in fields as varied as neurosciences, medical imaging, molecular or cellular biology, pediatric neurology or rehabilitation. But it is still not enough, and to help to translation this research work into concrete progress in the lives of people concerned, this effort must be supported and emphasized.
A public health issue
Most of the time “accidental”, cerebral palsy affects each year approximately 1 500 infants that nothing predisposed to this disability.
Because this condition lasts for life and because life expectancy of affected people is close to that of the rest of the population, those 1 500 infants just increase the number of the 125 000 people already living with cerebral palsy in France. 125 000 means twice as many as the number of people affected by Down Syndrome for instance.
Hence, the challenge of research on cerebral palsy is:
- To improve care and the quality of life of people already affected, and to bring solutions to their close circle;
- To pursue the decrease of prevalence of this pathology that affects 1 birth out of 570;
- And for the 4 newborn children who, every day, who still suffer of a brain lesion, to reduce the consequences of that lesion (motor, cognitive and sensory).
An extended and varied field of research
To reach those objectives, the field of research is vast and concerns a very large number of medical or scientific disciplines.
Four large domains can be identified:
Prevention
- Study and understand the main risk factors during pregnancy (namely prematurity), childbirth and the neonatal period.
- Identify mechanisms of brain lesions using animal models
- Be able to efficiently prevent perinatal neurological accidents
Early diagnosis and care
- Improve very early diagnosis (neurophysiology, imaging including antenatal, a.s.o.).
- Develop methods of neuroprotection (namely medicinal) in order to protect the foetus’ or infant’s brain and avoid lesions.
Care throughout life
- Understand motor, cognitive and sensory disorders, and their mechanisms
- Understand the development of abnormal neuronal circuits (using imaging, neurophysiology) and boost brain plasticity (brain capacity to reorganise itself, namely in children, to recover a function)
- Evaluate and validate rehabilitation technologies which allow a maximal autonomy
- Avoid the consequences of cerebral palsy (pain, deformation, orthopaedic complications), and control some symptoms (eg: abnormal postures and movements), by developing medicinal, surgical or rehabilitative treatments
Quality of life
- Develop and evaluate adapted learning methods in everyday or specialised environments
- Allow a better interaction of affected people with their environment, by developing man-machine interfaces offering new motor or sensory functionalities
- Define the best quality of life indexes and develop adapted actions
- Restore deficient functions (motricity, vision, cognition, a.s.o.), using namely hopes generated by recent progress (electrode or chips stimulation, or cellular therapy for instance)
TESTIMONIALS
Concerned people, parents, researchers, doctors, donors... All testify to the importance of advancing research
“Today, the family journey is still a very difficult one, and it is thanks to the research progress that we will succeed, all together, in better understanding what cerebral palsy is, in developing new treatments and therefore innovating in the accompaniment of people affected by cerebral palsy and their families.”
“My story with the Fondation Paralysie Cérébrale started in 2009 when, as a young clinic leader, I told myself that we were lacking in objectivity on the care for people affected with cerebral palsy. That’s when we proposed the CAP project to the Fondation Paralysie Cérébrale. The first results published in November 2023 are a true revolution in terms of rehabilitation."
