New dataset to enhance care for children with cerebral palsy

20 octobre 2022

The release of a new dataset sheds light on biological and clinical risk factors for children living with cerebral palsy (CP).

The Cerebral Palsy Integrated Neuroscience Discovery Network (CP-NET), an Integrated Discovery Program carried out in partnership with the Ontario Brain Institute (OBI), has just released critical data on childhood hemiplegic CP, a condition characterized by a weakness on one side of the body. In Canada, three in every 1,000 children are diagnosed with CP each year. Currently, there are about 47,500 people living with CP and hemiplegic CP affects 38 percent of people with the disorder.

The Hemi-NET Clinical Database, which focuses on children and youth aged 2-18 with a confirmed diagnosis of hemiplegic CP, contains data on more than 300 young people from across Ontario. Clinician scientists from nine study sites across the province, along with the children and patients, contributed clinical assessments and test results stemming from CP-NET research projects to the database.

“Research and innovation alongside collaboration are vital to the success of Ontario’s healthcare sector," said Jill Dunlop, Minister of Colleges and Universities. “OBI’s release of this new data set reaffirms its role as a scientific leader. With clinicians and patient partners working together across the province, Ontario is transforming the way in which we study, diagnose, and treat neurological conditions.”

The data are organized around the following platforms:

- Clinical Risk Factors: clinically relevant neonatal and obstetric risk factors from obstetrical and neonatal health charts,

- Genomics: saliva samples acquired from the index child and biological parent(s) with DNA extracted,

- Neuroimaging: standardized coding of clinically acquired neuroimaging, and

- Neurodevelopmental: standardized assessments of gross motor, fine motor, language, cognitive, behavioural function, and self-reported quality of life.

The standardized, cleaned, and curated data, now shareable on Brain-CODE, OBI’s state-of-the-art neuroinformatics platform, allow maximum utility for analysis across disease and across platform – all while protecting the identity of participating individuals.

As an Integrated Discovery Program carried out in partnership with OBI, CP-NET works with researchers, clinicians, and people impacted by cerebral palsy to accelerate the development of neuroscience discoveries. Dr. Darcy Fehlings, senior clinician scientist at Holland Bloorview Kids Rehabilitation Hospital and principal investigator at CP-NET, who led the OBI-funded research that contributed to improved understanding of the genetic basis of hemiplegic CP, said that these newly released data provides an opportunity for researchers from around the world to further explore new and better ways to prevent, treat, and manage symptoms in children with hemiplegic CP.

“This data set shows that when we embed common data elements, such as health care markers in the care delivery process, standardized assessments of cognitive and behavioural function, and self-reported quality of life, scientists and clinicians working in completely separate labs and hospitals can come together to improve care and drive change for individuals with CP and their families.”

“In fact,” Dr. Fehlings continued, “members of the CP-NET clinical team – located in different parts of Ontario – are already using these data to improve early care of children with CP such as promoting pediatric CP hip surveillance.”

Dr. Tom Mikkelsen, President and Scientific Director of the Ontario Brain Institute, said: “The creation and release of this data set, OBI’s sixth clinical release in an 18-month period, demonstrates clear progress in better understanding treatment options for conditions like cerebral palsy and underscores the benefits of the team science approach, which champions collective success over the success of any one individual.”

OBI and CP-NET invite all interested researchers to use this dataset in their own research to advance our collective understanding of CP and enhance care for those impacted by it.

Explore the Hemi-NET Clinical Database as well as OBI's other data sets on Brain-CODE.