© 2019 The Canadian Cerebral Palsy Registry

Help us define the next iteration of the Canadian Cerebral Palsy Registry

The Canadian CP Registry was founded 15 years ago in Quebec, and since then has grown to include over 2,100 participants living with CP recruited from 16 rehabilitation centres across six provinces. The extensive data that we have collected thanks to their participation has allowed us to publish over 35 scientific articles in top-tier journals and deepen the scientific understanding of CP, immensely benefiting researchers and families.

Registry 2.0 Focus Groups

We have received funding from Kids Brain Health Network to develop a "Registry 2.0", the next version of the Registry platform that will be open in three key ways:

Open to the whole country. The Registry currently relies on local coordinators at each rehabilitation centre to recruit participants and collect information about them. This means that we don't hear from some parts of the country, and we'd like to! Our new version will allow for self-registration and data entry directly by families themselves, wherever in Canada they might be.

Open to a variety of neurodevelopmental disabilities. We are opening up the Registry to make it modular and are planning new modules, beyond just CP. This will allow us to explore the significant overlaps often found between neurodevelopmental disabilities.
 

Open to people living CP and their families. We want to make sure that the next evolution of the Registry is asking the right questions, and helping families find the right answers. It will include a family resource section, created with the help of our Patient and Family Advisory Committee, and we are currently running focus groups to validate the data collection forms.

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Use the form below to contact Miriam Gonzalez, PhD, Postdoctoral Fellow at the Research Institute of the McGill University Health Centre and coordinator of the focus groups, to find out more information about them and to register to join a group near you:

* Required field

The study's Principal Investigators are

Dr Keiko Shikako-Thomas

McGill School of Physical & Occupational Therapy &

McGill University Health Centre Research Institute

 

Dr Maryam Oskoui

McGill University,

Montreal Children's Hospital &

McGill University Health Centre Research Institute

 

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  • Parents will receive a $20 gift card for participating.

  • Expenses related to transportation, baby-sitting or work day compensations to facilitate participation will be reimbursed.

This study is a collaboration with the CHILD-BRIGHT Network and has been approved by the MUHC Research Ethics Board.