© 2019 The Canadian Cerebral Palsy Registry

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Leading the way in cerebral palsy research

The CP Registry has registered over
2,200 participants with CP so far.

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For occasional news from the Registry and links to resources for CP families.

Recent publications

Profile of children with cerebral palsy spectrum disorder and a normal MRI study

Springer A, Dyck Holzinger S, Andersen J, Buckley D, Fehlings D, Kirton A, Koclas L, Pigeon N, Van Rensburg E, Wood E, Oskoui M, Shevell M. Neurology, Jul 2019

http://www.ncbi.nlm.nih.gov/pubmed/31127072

Losing a diagnosis of cerebral palsy: a comparison of variables at 2 and 5 years

Chen A, Dyck Holzinger S, Oskoui M, Shevell M, Canadian Cerebral Palsy Registry. Dev Med Child Neurol, Jul 2019

http://www.ncbi.nlm.nih.gov/pubmed/31273776

Family-centred health care for children with cerebral palsy

Shevell M, Oskoui M, Wood E, Kirton A, van Rensburg E, Buckley D, Ng P, Majnemer A. Dev Med Child Neurol, Oct 2018

http://www.ncbi.nlm.nih.gov/pubmed/30294783

Prevalence of sleep problems and sleep-related characteristics in preschool- and school-aged children with cerebral palsy

Horwood L, Mok E, Li P, Oskoui M, Shevell M, Constantin E. Sleep Med, May 2018

 

http://www.ncbi.nlm.nih.gov/pubmed/29966807

The Association Between Maternal Age and Cerebral Palsy Risk Factors

Schneider R, Ng P, Zhang X, Andersen J, Buckley D, Fehlings F, Kirton A, Wood E, van Rensburg E, Shevell M, Oskoui M. Pediatr Neurol, Pediatr Neurol, May 2018

 

http://www.ncbi.nlm.nih.gov/pubmed/29622489

Neonatal Infection in Children with Cerebral Palsy: A Registry-Based Cohort Study

Smilga AS, Garfinkle J, Ng P, Andersen J, Buckley D, Fehlings F, Kirton A, Wood E, van Rensburg E, Shevell M, Oskoui M. Pediatr Neurol, Mar 2018

http://www.ncbi.nlm.nih.gov/pubmed/29428154

"Accuracy of administrative claims data for cerebral palsy: A retrospective cohort study"

Oskoui M, Ng P, Dorais M, Pigeon N, Koclas L, Lamarre C, Malouin F, Richards CL, Shevell M, Joseph L.
CMAJ Open, July 2017

http://www.ncbi.nlm.nih.gov/pubmed/28720597

"Prevalence Estimate of Cerebral Palsy in Northern Alberta: Births, 2008-2010"

Robertson CM, Ricci MF, O'Grady K, Oskoui M, Goez H, Yager JY, Andersen JC.
Canadian Journal of Neurological Sciences, March 2017

 

http://www.ncbi.nlm.nih.gov/pubmed/28322177

"Clinical profile of children with cerebral palsy born term compared with late- and post-term: a retrospective cohort study"

Frank R, Garfinkle J, Oskoui M, Shevell MI.

BJOG, September 2016

 

http://www.ncbi.nlm.nih.gov/pubmed/27592548

"Clinically relevant copy number variations detected in cerebral palsy"

Oskoui M, Gazzellone M, Fehlings D, Shevell MI, Scherer S.

Nature Communications, June 2015

www.ncbi.nlm.nih.gov/pubmed/26236009

Quick research snapshot (PDF) of the study.

Cerebral Palsy videos

What do the F-words mean to youth with impairments? 
by Andrea Cross, of McMaster University

AACPDM Presidential Guest Lecture by Dr Michael Shevell
"If Medicine is a Team Sport, What is the Pediatric Neurologist’s Role?"

See also the many excellent CP videos produced by the Cerebral Palsy Foundation.

News & Conferences

Lena Faust presents cheque to Dr Maryam Oskoui and Dr Michael Shevell of th Canadian Cerebral Palsy Registry

On September 22nd McGill PhD student Lena Faust raised $4,500 for the CP Registry by running a half-marathon! This was a big project, as she lives with mild cerebral palsy herself. She made a training plan, followed it, and ran the 22km in 2 hours and 26 minutes! She was even profiled on CTV News. We'd like to give her our biggest thanks and respect for her dedication and generosity. Thank you, Lena!

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The Canadian CP Registry was present at the 2019 AACPDM meeting in Anaheim. Dr Oskoui served on panels for the International Cerebral Palsy Genomics Consortium and the World CP Register and Surveillance Congress, while Dr Shevell and collaborators Zachary Boychuck, Arielle Springer and Anjellica Chen presented new Registry findings.

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For more than a decade the Canadian CP Registry has played an innovative and transformative role in CP research. The registry is now evolving to a new platform that addresses new and exciting research questions, includes even more data, and is aimed at being open to all Canadians living with CP. Read more on the KBHN website: "Canadian Cerebral Palsy Registry Undergoing Exciting Expansion".

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The Registry owes a huge thank you to Gene Piccoli and the whole Piccoli family, who organized –and cycled!– a bicycling fundraiser trip from Toronto to Montreal in support of the CP Registry. Many thanks, we are touched and honoured!

 

You can join them in supporting our research by signing up at www.401bikechallenge.ca.

The Cerebral Palsy Registry was featured by Kids Brain Health Network, our main funding source, on the occasion of World CP Day 2018. Read the article to learn about the work we do and where we are heading in the coming years.

 

www.kidsbrainhealth.ca/index.php/2018/10/06/celebrating-the-canadian-cerebral-palsy-registry-and-its-role-on-world-cp-day/

The Canadian CP Registry attended the 2nd National Knowledge Translation Conference in Rehabilitation hosted by the McGill School of Physical & Occupational Therapy on April 19 & 20, 2018 in Montreal.

 

SPOT KT Conference

The Registry is now on Twitter! Follow us on our new account, @CanCPRegistry, to get find out more about CP in Canada, our activities and our research.

www.twitter.com/CanCPRegistry

Canadian CP Registry investigators attended and participated in lectures and workshops at the inaugural Brain-Child-Partners Conference hosted by the CHILD-BRIGHT and Kids Brain Health networks. It took place in Toronto from November 6-8, 2017.

 

www.brainchildpartners.ca

Canadian CP Registry co-directors Dr Maryam Oskoui and Dr Michael Shevell both gave Presidential Guest Lectures at the 2017 Conference of the American Academy for Cerebral Palsy and Developmental Medicine, which took place in Montreal in September 2017.

 

www.aacpdm.org/meetings/2017

The Canadian Cerebral Palsy Registry is now listed on the Canadian Clinical Trials Asset Map, a comprehensive database for all Canadian clinical research assets. Register and find us on the map!

The Canadian Cerebral Palsy Registry was invited to present at the Research Day of the Regroupement provincial en Paralysie Cérébrale pédiatrique at the University of Sherbrooke's Faculty of Medicine on October 27, 2016. Thank you to Dr Pigeon for organizing an excellent conference.

Investigators from the Canadian Cerebral Palsy Registry presented at the annual Brain Development Conference in Calgary, and met for the annual Canadian CP Registry general meeting.

http://braindev2016neurodevnet.weebly.com

Canadian CP Registry co-director Dr Maryam Oskoui gave the Presidential Guest Lecture at the 2016 Conference of the American Academy for Cerebral Palsy and Developmental Medicine.

 

www.aacpdm.org/meetings/2016

Investigators from the Canadian Cerebral Palsy Registry participated in the World CP Register Day in Stockholm on June 1, 2016, and gave several presentations at the conference, including one on the history, purpose and many uses of the CP Registry.

The Canadian Cerebral Palsy Registry made headlines on CTV News, CBC and The Montreal Gazette with the breakthrough finding that cerebral palsy may be caused not only by brain injuries, but also by genetic anomalies. 

http://www.ctvnews.ca/health/cerebral-palsy-cases-also-caused-by-genetic-anomalies-not-just-brain-injury-study-1.2499824

 

http://www.cbc.ca/news/health/cerebral-palsy-linked-to-genetic-anomalies-1.3177689

 

http://montrealgazette.com/news/not-a-cure-but-closure-new-cerebral-palsy-research-gives-families-hope

Participating Centres

The Canadian Cerebral Palsy Registry is a database of basic information collected from children with cerebral palsy from hospitals, clinics and rehabilitation clinics from across the country.

 

It is the combined effort of these centres and their coordinators and investigators which have led to the current collection of invaluable data which has been used to help children afflicted with cerebral palsy

 

Hospitals and clincs from British Colombia, Alberta, Ontario, Quebec, Nova Scotia and Newfoundland have all helped contribute to the continued growth and development of the Canadian Cerebral Palsy Registry.