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.
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!
[This post is part of our Knowledge Translation Tuesday series. Guest author Lily Collison, author of Spastic Diplegia — Bilateral Cerebral Palsy, continues the series on her journey with her son and cerebral palsy (CP). Author note: The is the view out over the Atlantic on Sunday as we climbed Knocknarea–the hill I pointed out in last week’s post.]
In coming to terms with our child’s CP diagnosis, we almost always ask the question why? This week I will write about cerebral palsy causes and risk factors. As we will see below, very often no specific cause is identified. This was the case with our son.
The term cause is self-explanatory. The term risk factor can be defined as any attribute, characteristic, or exposure of an individual that increases the likelihood of developing a disease or injury. Causes thus have a stronger relationship with CP than risk factors. Significant deprivation of oxygen to the infant’s brain, for example, is a cause of CP. Preterm birth is a risk factor but not a cause of CP—in other words, not every preterm baby is found to have CP. There are many possible causes of brain injury, including events before and during pregnancy, during birth, or in early infant life. Much is known about the causes and risk factors for CP, but much remains unknown as well. Depending on what you read, you may come across different lists of causes and risk factors for CP.
Causes of CP Developing fetuses and infants (up to age two to three) can develop CP if they experience brain injury or disruptions in brain development caused by1:
Bleeding in the brain before, during, or after birth.
Infections of the brain, including meningitis or encephalitis.
Shock—a state in which organs and tissues do not receive adequate blood flow.
Traumatic brain injuries, such as from a serious car accident.
Seizures at birth or in the first month following birth.
Certain genetic conditions.
Risk factors for CP Risk factors for CP include1:
Preterm birth and low birth weight. A typical pregnancy lasts 40 weeks. Babies born before 37 weeks have a greater risk of having CP. The risk increases the earlier a baby is born and the lower the baby’s birth weight. Twins and other multiple-birth siblings are at particular risk because they tend to be born earlier and at lower birth weights.
Serious illness, stroke, or infection in the mother. CP is more common in children whose mothers: – Experience certain viral and bacterial infections and/or high fevers during pregnancy. – Have coagulation (clotting) disorders or experience blood clots during pregnancy. – Receive excessive exposure to harmful substances during pregnancy. – Have thyroid problems, seizure disorders, or other serious health concerns.
Serious illness, stroke, or infection in the baby. Infants who experience serious illnesses, strokes, or seizures around the time of birth are at greater risk of having CP. Such illnesses might include: – Severe jaundice. (Kernicterus is a rare kind of preventable brain damage that can happen in newborns with jaundice.) – Seizures during the first 48 hours after birth. – Infections of the brain, such as meningitis or encephalitis. – Strokes caused by broken or clogged blood vessels or abnormal blood cells.
Pregnancy and birth complications. For example, not enough nutrition through the placenta or a lack of oxygen during labor and birth. Incompatible blood types between mother and baby.
The Cerebral Palsy Research Network (CPRN) announced that its third publication entitled “Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report” was published in Archives of Rehabilitation Research and Clinical Translation this past week. The publication is “open access” meaning that anyone from the cerebral palsy (CP) community can read the article free of charge. The article, authored by the founding members of the CPRN Executive Committee, describes the creation of the CPRN Registry from a process perspective – who was involved, what were the objectives and how and why were the data elements chosen for inclusion in the registry.
In addition to defining the process, the article also provides a baseline registry report for the first few years of data collection. This preliminary report provides a descriptive analysis of the first 1858 patients – demographics, movement disorder, gross motor capabilities, and other clinical characteristics — included in the registry from eight sites. Since this articled was drafted, the registry has grown to more than four thousand patients from 10 sites. The registry is expected to continue to grow in step functions as more sites come online with their clinical practice supporting the registry.
The article also discusses how the CPRN registry uniquely leverages hospital electronic medical records (EMR) systems to include large volumes of data without burdening clinicians. The CPRN registry database has been built into Epic – one of the leading EMR systems. Development is underway for Cerner – another leading EMR system. The discussion section of the article also compares the focus of the CPRN Registry to the Common Data Elements for CP as defined by the National Institute of Neurological Disorders and Stroke in conjunction with the American Academy for Cerebral Palsy and Developmental Medicine.