[This post is part of our Knowledge Translation/Education Tuesday series. Guest author Lily Collison, author of Spastic Diplegia–Bilateral Cerebral Palsy, continues the series. You can ask questions of the author on the MyCP Forum].
The sculpture above “Waiting on shore” is located in our village (Rosses Point) on the Atlantic coast. It reflects the age-old anguish of seafaring people who watched and waited for the safe return of loved ones. It’s a gentle reminder to future generations to remember a proud history of courage and survival, of loss and grief.
In the last two posts, I addressed causes of and risk factors for CP. This week I’ll cover the prevalence of CP. The prevalence of a condition is how many people in a defined population have the condition at a specific point in time. Prevalence rates can vary geographically. A 2013 worldwide review found that the overall prevalence of CP was 2.11 per 1,000 live births*1. A recent (2019) study, however, reported that the birth prevalence** of CP declined across Australian states between 1995 and 20092. The percentage of children with CP whose disability was moderate to severe also decreased. A 2020 report on collaborative research between the European and Australian Surveillance Networks found similar decreasing prevalence of CP in Europe3. This is encouraging.
Some further points to note:
- CP is the most common cause of physical disability in children4.
- Males are at higher risk of CP than females. Data from Australia found that 57 percent of those with CP were male, while males represented 51 percent of all births5. This may be because males have certain nerve cell vulnerabilities that may result in CP6. It is noteworthy that there are frequently more male than female participants in CP studies.
- Relative to its prevalence and its impact on the life span of those with the condition, funding for CP research is very low. The NIH reports research funding by condition. Although the reported prevalence of CP is twice as high as that of Down syndrome (0.2 percent versus 0.1 percent), funding allocated to CP research in 2019 ($28 million) was significantly lower than that of Down syndrome research ($86 million)7. Funding estimates for 2020 and 2021 are $29 and $26 million, respectively, for CP and $113 and $105 million for Down syndrome.
- An analysis of National Institutes of Health (NIH) funding for CP research from 2001 to 2013 found that only 4 percent went toward studies of CP in adulthood8. Thus research on CP in adulthood receives only a small percentage of an already small budget.
*Births up to 2004.
**This was formerly referred to as “incidence,” but the term “birth prevalence” is now felt to be more accurate2.
1Oskoui M, Coutinho F, Dykeman J, Jetté N, Pringsheim T (2013) An update on the prevalence of cerebral palsy: a systematic review and meta-analysis. Dev Med Child Neurol 55: 509–519.
2Galea C, Mcintyre S, Smithers-Sheedy H, et al. (2019) Cerebral palsy trends in Australia (1995–2009): a population-based observational study. Dev Med Child Neurol 61: 186–193.
3Sellier E, McIntyre S, Smithers-Sheedy H, Platt MJ, SCPE and ACPR Groups (2020) European and Australian Cerebral Palsy Surveillance Networks Working Together for Collaborative Research. Neuropediatrics 51(2): 105-112.
4Graham HK, Rosenbaum P, Paneth N, et al. (2016) Cerebral palsy. Nat Rev Dis Primers 2: 1–24.
5Australian Cerebral Palsy Register (ACPR) Group (2013) Australian Cerebral Palsy Register Report 2013. [pdf] Available at: .
6Graham HK, Thomason P, Novacheck TF (2014) Cerebral palsy. In: Weinstein SL, Flynn JM, editors, Lovell and Winter’s Pediatric Orthopedics, Level 1 and 2. Philadelphia: Lippincott Williams & Wilkins, pp 484–554.
7National Institutes of Health (NIH) (2020) Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC). [online] Available at: .
8Wu YW, Mehravari AS, Numis AL, Gross P (2015) Cerebral palsy research funding from the National Institutes of Health, 2001 to 2013. Dev Med Child Neurol 57: 936–941.