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
Now we need your help to identify the answers we want to find in the future, and define the questions that will help get us there.
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.
How can I get involved?
Join a focus group!
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Make sure we ask research questions that are important to families.
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Help us to create a new platform that is open and inviting to families.
We are currently looking to recruit youth, and parents of children and youth, who have a diagnosis of CP in Montreal.
Get in touch!
Who can participate?
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Parents of children with a diagnosis of CP (children aged 0-21 years old).
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Youth with a diagnosis of CP (aged 14 and older).
What can I expect?
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Participate in a focus group (a meeting with 8 to 12 other people for about 90 minutes).
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Fill out a demographic form and a brief questionnaire on the quality of life of the family member living with CP.
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Review a list of questions compiled by researchers and provide your thoughts on whether these questions seem relevant and should be included in the database.
Are there any benefits to me?
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Participants will receive a $20 gift card as a thank-you.
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Expenses related to transportation, baby-sitting or work day compensations to facilitate participation will be reimbursed.
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.
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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.