The Cerebral Palsy Research Network (CPRN) is a group of doctors, therapists and patient advocates collaborating to improve treatments and outcomes for people with cerebral palsy (CP). The network combines the expertise of doctors and therapists committed to treating CP with clinical epidemiologists and rigorous data collection practices to plan and execute high quality clinical trials and quality improvement protocols.
The mission of the Cerebral Palsy Research Network (CPRN) is to improve outcomes that people with cerebral palsy value most through high quality clinical research and quality initiatives.
Edward A. Hurvitz MD of Michigan Medicine, University of Michigan and Cerebral Palsy Research Network (CPRN) Executive Committee, was awarded the Foundation for Physical Medicine & Rehabilitation Gabriella Molnar grant for a project entitled “Feasibility of Adding Grip Strength Measures to Body Composition Assessments in Individuals with Cerebral Palsy.” The aim of the project is to test the feasibility of adding measures such as waist-hip circumference, skinfold measures, and grip strength to a regular clinic appointment for individuals with cerebral palsy (CP) from age 8 through adulthood, and then potentially as data points in the CPRN CP Registry. The Michigan Adults with Pediatric Onset Disabilities research group has published extensively on chronic disease risk in adults with CP. Body composition and grip strength are well documented indicators for risk of morbidity and mortality in typical developing populations, and obesity has been associated with risk of multi-morbidity in adults with CP, including young adults between ages 18-40. The study will also include a history of chronic disease with an exploratory aim to correlate body composition and hand grip findings to history.
CPRN congratulates Dr. Hurvitz and his colleagues for their success in funding this research which was originally approved as a concept for CPRN in April 2019. This study addresses top priorities from Research CP, including the study of the effects of aging with cerebral palsy as well as laying the groundwork to do studies of exercise strategies to promote better health outcomes. Co-investigators on the study include Drs. Mark Peterson, Dan Whitney, Heidi Haapala, Mary Schmidt, Angeline Bowman and Jessica Pruente. The funding amount is $10,000 dollars, to be used for measurement equipment and research assistance. The start date is December 1, and the study is planned for 18 months.
The Cerebral Palsy Research Network (CPRN) is proud to participate in this year’s World CP Day. We at CPRN, with our partner CP NOW, are enabling members of the cerebral palsy (CP) community to “Make Your Mark” through participation in CP research. A little less than a year ago we launched MyCP.org and invited the extended CP community to make a difference by contributing to research – setting research direction, contributing your experience and interacting with clinician researchers committed to improving outcomes for people with CP. MyCP is now over 1,000 people strong providing news, discussions and opportunities to participate in research from your phone or computer. This past March we launched the MyCP webinar series so members of the community could learn about CPRN research initiatives directly from CPRN researchers. Our research reaches from diagnosis into retirement so our community of people with CP, parents, advocates, clinicians and researchers are working to improve quality of life throughout the lifespan. Join MyCP and tell us how you have made your mark!
Our home is in Sligo, on the north west coast of Ireland. It’s known for its scenery and also its association with the poet, WB Yeats. Sligo has special mountains–Knocknarea (really only a hill, included in a previous post) and Ben Bulben above (elevation 1,726 feet).
In my last post I gave a typical list of causes of and risk factors for CP. This week I will look at some studies that give us further insight.
Although any one risk factor, if severe, may be sufficient to cause CP, more often it is the presence of multiple risk factors that leads to CP. One factor may interact with another to cause the brain injury, such as an event (or events) during pregnancy combined with the stress of birth combined with a genetic vulnerability1.
The literature suggests that events during pregnancy are more likely to cause CP than events during labor or delivery. More specifically:
A major US study, called the Collaborative Perinatal Project, conducted between 1959 and 1974 followed approximately 50,000 women and their children from the first prenatal visit until the children were seven years old. It found that events during labor and delivery were not major contributors to the occurrence of CP; most cases had their origins before labor began. A second finding was that intrauterine inflammation was a major cause of adverse pregnancy outcome2.
At least 70 percent of cases of CP have antecedents* during pregnancy, and only 10 to 20 percent of cases are related to the child’s birth3. Neither the routine use of fetal monitoring during labor nor the increased incidence of caesarean births (factors which reduce risk during labor and delivery) have reduced the number of cases of CP3.
Most brain injuries which cause CP occur in the second half of pregnancy, a period when the rate of brain development is fastest4.
Some risk factors are on the decline, but others are increasing3,5. Advances in neonatal care have reduced the risk of birth injury. However, with these advances more preterm infants and infants with low birth weight are surviving, some of whom may develop CP. In vitro fertilization has led to more multiple births, and multiple births is a risk factor for CP. The fact that some risk factors are decreasing while others are increasing is leading to a change in the type of CP that develops. For example, an injury to a brain at 24 weeks can have a different effect than one at 28 weeks or 36 weeks. Until recently, babies born at 24 weeks would not have survived. Now, thankfully, many of these babies survive; however, some may develop CP. The most common types of CP differ in different parts of the world, depending on risk factors.
In approximately 90 percent of cases, CP results from healthy brain tissue becoming damaged rather than from abnormalities in brain development5.
Confirmation of the presence of a brain injury by magnetic resonance imaging (MRI) occurs in many but not all cases. Up to 17 percent of people with CP have normal MRI brain scans5. Imaging may also help determine when the brain injury occurred5.
The cause of CP in an individual child is very often unknown6.
Though I did not know what caused Tommy’s CP, in the early days I wasted a lot of time feeling guilty. I had worked very hard and was stressed during his pregnancy, and I felt responsible. Today I no longer feel that sense of guilt. I didn’t knowingly do anything wrong: my life circumstances were such that I was very busy, and besides, there are multiple possible causes of brain injury. I encourage parents to waste no time on guilt—we are where we are and we must move forward.
* Things that existed before or that logically preceded another event.
1Nelson KB (2008) Causative factors in cerebral palsy. Clin Obstet Gynecol 51: 749–762. 2Klebanoff MA (2009) The collaborative perinatal project: a 50-year prospective. Pediatr Perinat Epidemiol 23: 2–8. 3Graham 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. 4Hadders-Algra M (2014) Early diagnosis and early intervention in cerebral palsy. Front Neurol 5(185): 1–13. 5Graham HK, Rosenbaum P, Paneth N, et al. (2016) Cerebral palsy. Nat Rev Dis Primers 2: 1–24. 6Rosenbaum P, Rosenbloom L (2012) Cerebral Palsy: From Diagnosis to Adulthood. London: Mac Keith Press.