The early detection of CP worldwide – distant dreams and challenges
Recently, a friend of mine asked what I imagine doing in twenty years. This question made me dream of new techniques to fully understand the developing human brain and how it works, and of innovations to protect the newborn brain and enhance plasticity. The reality is still far behind. (Read more)
This summer I attended the European Academy of Childhood Disability Meeting in Stockholm. One of the meeting themes was the current research evidence on the available tools for an early detection of Cerebral Palsy (CP) which I have studied for over 20 years. During the past decades there have been numerous regional, national, and international efforts to develop diagnostic assessment tools for CP. CP is a disorder of the development of movement and posture which always causes limitations in motor activity. Its average incidence rate is 2:1000, and at present there are 17 million people in the world who have CP.
Hammersmith Infant Neurological Examination (HINE) was one of the recommended neurological examinations. It was my main task as a post doc research fellow to standardize and develop a scoring system for this method at Hammersmith Hospital in London 20 years ago. It took two years to trace all children in the original study cohort and examine them. It took 18 more years for several research groups, like ours in Finland, to provide a satisfactory amount of evidence including psychometric data that this method is truly valid in different settings ranging from fully equipped university hospitals to resource-poor settings without any brain imaging or neurophysiological test facilities. The original paper on HINE and a few of its clinical applications have been published in the Journal of Pediatrics which is one of the best rated forums where you can imagine to publish this kind of research data. It would be important to spread the message about evidence-based examination and detection methods as none of us wishes to see a child with CP who has been diagnosed late and, accordingly, has not received any early intervention – or as we see among the refugee population also in Finland, has never received any intervention at all! The cost of lost opportunity does not only permanently affect the child and his or her family, but in the long run, also society.
In 20 years I hope I can say that the early detection of CP by the age of 4 to 5 months of age is possible worldwide with an evidence-based combination of clinical assessment tools. For this to happen, the following 20 years must be years of national and international collaboration, respect, and concrete support in terms of research facilities at tertiary level hospitals and research grants – despite the fact that this research line is not likely to turn into a gold mine of commercial applications nor to produce NEJM papers.