Project Description

Challenge

When it comes to neurodevelopmental disabilities, early diagnosis is critical so that children can access supports and interventions early on. For cerebral palsy (CP), it is generally recommended that children be diagnosed as early as possible. Using new tools, in many cases this is potentially feasible by primary care physicians before infants with CP are one year of age, and by specialists within neonatal follow-up programs for high-risk infants, before five months of age.

In Canada, children are being diagnosed with CP much later than these recommended time frames because neonatal follow-up programs, and primary care physicians may not have the expertise or training to identify children with CP at a young age. The Early Detection and Intervention Toolkit for CP (EDIT-CP) is hoping to change this and make it easier for children to be diagnosed with CP in line with recommendations.

Project Summary

Development of the Toolkit is being led by Dr. Darcy Fehlings (Bloorview Rehabilitation Sciences Institute) and Dr. Annette Majnemer (Research Institute of the McGill University Health Centre). It will bring together scientific evidence from the CP field in a way that is easy for physicians and other health professionals to understand and incorporate into their practice. One part of the toolkit will be focused on high-risk infants, and another part will be focused on those detected in a primary care setting.

Looking Towards the Future

A Clinical Practice Guideline (CPG), which uses a general movement assessment tool and neuroimaging to detect CP in high-risk infants, has been established. The PROMPT  project has identified attributes and warning signs that primary care physicians can look for that are suggestive of CP, which would warrant referral to a medical specialist for CP diagnosis. Both the CPG and results from the PROMPT project will be combined—along with data from studies published over the last decade—to form the toolkit. Several versions of the toolkit will be tested with key stakeholders, to ensure that it is user-friendly. A survey will also be used to determine the uptake and overall effectiveness of the EDIT-CP Toolkit.

Funding

Kids Brain Health Network – $100,000.00

Team

Principal Investigators

Dr. Darcy Fehlings, Bloorview Rehabilitation Sciences Institute
Dr. Annette Majnemer, RI-MUHC

Co-investigators

Clinicians: Dr. Page Church, D. Leduc, P. Li, A. Synnes

Partners

Ontario Brain Institute
Cerebral Palsy Foundation
American Academy for CP and Developmental Medicine (AACPDM)
Children’s Healthcare Canada
Canadian Association of Paediatric Health Centres (CAPHC)
Patient-partners