Resources for children with cerebral palsy and their families, such as research and educational presentations regarding therapies, care, and a free cerebral palsy toolkit you can download!

Seen from across the gently lapping waters, Ben Bulben, a massive flat-rock formation in Ireland under a clear blue sky.

Cerebral Palsy Causes and Risk Factors – Part 2

[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.]

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.

A white speech bubble against a lime green background with the words ‘Let’s talk about CP’.

Webinar: Speech and Language Predictors of Participation

Webinar: Speech and Language Predictors of Participation

Kristen Allison, PhD, CCC-SLP

Kristen Allison, PhD, CCC-SLP

The Cerebral Palsy Research Network (CPRN) announced that its next webinar in it MyCP Webinar series would be on the role of speech and language as predictors of participation for children with cerebral palsy (CP) on Tuesday, September 29, at 8 pm ET.  Kristen Allison, PhD, CCC-SLP, an assistant professor at Northeastern University, will discuss her research on this topic. Dr. Allison’s research was funded by the Research CP award sponsored by CP NOW in the fall of 2019.  The presentation will be approximately 20 minutes and followed by an open Q&A with Dr. Allison. The study, which includes children of all abilities with CP between the ages of four and 17 years-old, seeks to understand how language skills impact a child’s ability to participate in various activities.  Participation is a critical factor in quality of life and is an increasingly important patient reported outcome measure for many research efforts. Dr. Allison’s study was made available to participants in the CPRN Community Registry on MyCP in the spring of 2020. 

Interested participants need to register for the webinar to be sent instructions for joining.  Webinars will be recorded and posted for later viewing.  The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies.  Please join us!

CPRN Expands Patient Engagement to Include Adults with Cerebral Palsy

The Cerebral Palsy Research Network (CPRN) has invited adults with cerebral palsy and caregivers of adults to join an adult registry study panel. The panel will partner with clinicians and providers who have led the creation of adult registry elements for the CPRN Registry. The panel will help determine study questions that are most important to adults with CP and have an opportunity to participate in the research process. The CPRN Adult Registry group is co-led by Mary Gannotti, PT Ph.D. and Debbie Thorpe, PT Ph.D. and includes providers from a wide range of disciplines who treat adults with (or children or both) CP. The adult registry study panel will be organized by Michele Shusterman of CP Now Foundation and CP Daily Living in her role as the Patient Engagement Leader on the CPRN leadership team. The panel members will represent a group of people with CP with diversity among age, race, gross motor function, and cognitive abilities.

CPRN plans to invite a similar panel to participate in the CPRN Registry efforts for children. Both groups will be extended opportunities to influence the overall research agenda for CPRN at a future planning meeting. The engagement of patient stakeholders in research has been demonstrated to enhance the impact of clinical research and is integral to the mission of CPRN.

PCORI Cerebral Palsy Study Decision Imminent

The Patient Centered Outcomes Research Institute (PCORI) makes its funding decisions at public meetings of its board of governors. The next PCORI board meeting is scheduled for January 26, 2016 and will include a formal decision on the CPRN/University of Virginia application entitled Enhancing Surgical Decision Making for Families of Children with Cerebral Palsy: A Practice-Based Evidence Study. The CPRN leadership team members, all of whom are co-principal investigators (PIs) for this study, are eager to hear the results of this PCORI application process. Study funding will greatly accelerate the work of CPRN by providing additional support to bring the leadership team, site PIs and the study patient stakeholder partners together as soon as April, 2016 to kick off the cerebral palsy study.

In the interim, CPRN will announce charter members later this month. Charter members will play a key role in finalizing the infrastructure and governance for the CPRN registry and network operations. The PCORI study and future CPRN studies will build on the registry and network infrastructure to accelerate study planning and core data capture for research.