Ignite Creation Date:
2025-12-25 @ 1:27 AM
Ignite Modification Date:
2026-01-08 @ 6:14 AM
Study NCT ID:
NCT03353194
Status:
COMPLETED
Last Update Posted:
2021-02-25
First Post:
2017-11-15
Is NOT Gene Therapy:
True
Has Adverse Events:
False
Brief Title:
Canadian CP Registry - Registre Canadien de la Paralysie Cérébrale
Sponsor:
Organization:
Raw JSON
{'hasResults': False, 'derivedSection': {'miscInfoModule': {'versionHolder': '2025-12-24'}, 'conditionBrowseModule': {'meshes': [{'id': 'D002547', 'term': 'Cerebral Palsy'}], 'ancestors': [{'id': 'D001925', 'term': 'Brain Damage, Chronic'}, {'id': 'D001927', 'term': 'Brain Diseases'}, {'id': 'D002493', 'term': 'Central Nervous System Diseases'}, {'id': 'D009422', 'term': 'Nervous System Diseases'}]}}, 'protocolSection': {'designModule': {'studyType': 'OBSERVATIONAL', 'designInfo': {'timePerspective': 'PROSPECTIVE', 'observationalModel': 'OTHER'}, 'enrollmentInfo': {'type': 'ACTUAL', 'count': 2771}, 'targetDuration': '5 Years', 'patientRegistry': True}, 'statusModule': {'overallStatus': 'COMPLETED', 'startDateStruct': {'date': '2004-04-14', 'type': 'ACTUAL'}, 'expandedAccessInfo': {'hasExpandedAccess': False}, 'statusVerifiedDate': '2021-02', 'completionDateStruct': {'date': '2020-04', 'type': 'ACTUAL'}, 'lastUpdateSubmitDate': '2021-02-23', 'studyFirstSubmitDate': '2017-11-15', 'studyFirstSubmitQcDate': '2017-11-22', 'lastUpdatePostDateStruct': {'date': '2021-02-25', 'type': 'ACTUAL'}, 'studyFirstPostDateStruct': {'date': '2017-11-27', 'type': 'ACTUAL'}, 'primaryCompletionDateStruct': {'date': '2020-04', 'type': 'ACTUAL'}}, 'outcomesModule': {'primaryOutcomes': [{'measure': 'Characterize the CP profile across Canada', 'timeFrame': 'An average of every two years, up to study completion or ten years, whichever comes first.', 'description': 'CP subtype, severity, and associated conditions'}]}, 'oversightModule': {'oversightHasDmc': True, 'isFdaRegulatedDrug': False, 'isFdaRegulatedDevice': False}, 'conditionsModule': {'keywords': ['Cerebral Palsy', 'Canada', 'Registry'], 'conditions': ['Cerebral Palsy']}, 'referencesModule': {'references': [{'pmid': '26236009', 'type': 'RESULT', 'citation': 'Oskoui M, Gazzellone MJ, Thiruvahindrapuram B, Zarrei M, Andersen J, Wei J, Wang Z, Wintle RF, Marshall CR, Cohn RD, Weksberg R, Stavropoulos DJ, Fehlings D, Shevell MI, Scherer SW. Clinically relevant copy number variations detected in cerebral palsy. Nat Commun. 2015 Aug 3;6:7949. doi: 10.1038/ncomms8949.'}, {'pmid': '26010819', 'type': 'RESULT', 'citation': 'Oskoui M, Messerlian C, Blair A, Gamache P, Shevell M. Variation in cerebral palsy profile by socio-economic status. Dev Med Child Neurol. 2016 Feb;58(2):160-6. doi: 10.1111/dmcn.12808. Epub 2015 May 22.'}, {'pmid': '23948680', 'type': 'RESULT', 'citation': 'Shevell M, Dagenais L, Oskoui M. The epidemiology of cerebral palsy: new perspectives from a Canadian registry. Semin Pediatr Neurol. 2013 Jun;20(2):60-4. doi: 10.1016/j.spen.2013.06.008. No abstract available.'}, {'pmid': '23112248', 'type': 'RESULT', 'citation': 'Oskoui M, Majnemer A, Dagenais L, Shevell MI. The relationship between gross motor function and manual ability in cerebral palsy. J Child Neurol. 2013 Dec;28(12):1646-52. doi: 10.1177/0883073812463608. Epub 2012 Oct 30.'}, {'pmid': '28300820', 'type': 'RESULT', 'citation': 'Garfinkle J, Wintermark P, Shevell MI, Oskoui M. Children born at 32 to 35 weeks with birth asphyxia and later cerebral palsy are different from those born after 35 weeks. J Perinatol. 2017 Aug;37(8):963-968. doi: 10.1038/jp.2017.23. Epub 2017 Mar 16.'}, {'pmid': '23363886', 'type': 'RESULT', 'citation': 'Oskoui M, Joseph L, Dagenais L, Shevell M. Prevalence of cerebral palsy in Quebec: alternative approaches. Neuroepidemiology. 2013;40(4):264-8. doi: 10.1159/000345120. Epub 2013 Jan 24.'}]}, 'descriptionModule': {'briefSummary': 'The Canadian Cerebral Palsy (CP) Registry is a confidential, nation-wide collection of medical and social information about children with cerebral palsy. The Registry was first implemented in 2003 in 6 administrative regions of Quebec and was later extended to paediatric centres in Newfoundland, Nova Scotia, Ontario, Alberta, and British Columbia. Over 1850 children living with Cerebral Palsy have been registered so far. The Registry is the first national registry for cerebral palsy in North America.', 'detailedDescription': 'The Canadian Cerebral Palsy Registry is a multi-regional Canadian registry to identify potential risk factors related to pregnancy and interactions of the environment and genetics. The Registry provides researchers with the approximate number of children with cerebral palsy across Canada, and data in the Registry helps researchers explore reasons behind the causes of cerebral palsy, in addition to supporting studies which may lead to improvements in the overall care of children with CP.\n\nCerebral palsy is the most common cause of physical disability in children in Canada and it is important that we gain a better understanding of its prevalence, risk factors and current clinical profile. The Canadian CP Registry provides valuable data from different Canadian regions which can be shared and analyzed so as to provide answers to these important questions. Specifically, the Registry serves to:\n\n* Characterize the profile of children living with CP across the country\n* Identify risk factors associated with CP\n* Monitor the prevalence of CP across the country\n* Provide a platform for subject recruitment for population-based research on CP'}, 'eligibilityModule': {'sex': 'ALL', 'stdAges': ['CHILD', 'ADULT'], 'maximumAge': '18 Years', 'minimumAge': '18 Months', 'samplingMethod': 'PROBABILITY_SAMPLE', 'studyPopulation': 'Children living with a diagnosis of Cerebral Palsy in Canada.', 'healthyVolunteers': False, 'eligibilityCriteria': 'Inclusion Criteria:\n\n* Under 18 (age cut-off varies by region)\n* Diagnosed with Cerebral Palsy\n* Living in Canada\n\nExclusion Criteria:\n\n* Uncertain CP diagnosis'}, 'identificationModule': {'nctId': 'NCT03353194', 'briefTitle': 'Canadian CP Registry - Registre Canadien de la Paralysie Cérébrale', 'organization': {'class': 'OTHER', 'fullName': 'McGill University Health Centre/Research Institute of the McGill University Health Centre'}, 'officialTitle': 'The Canadian Cerebral Palsy Registry - Le Registre Canadien de la Paralysie Cérébrale', 'orgStudyIdInfo': {'id': '09-234-PED'}}, 'contactsLocationsModule': {'locations': [{'city': 'Calgary', 'state': 'Alberta', 'country': 'Canada', 'facility': "Alberta Children's Hospital", 'geoPoint': {'lat': 51.05011, 'lon': -114.08529}}, {'city': 'Edmonton', 'state': 'Alberta', 'country': 'Canada', 'facility': 'Glenrose Rehabilitation Hospital', 'geoPoint': {'lat': 53.55014, 'lon': -113.46871}}, {'city': 'Vancouver', 'state': 'British Columbia', 'country': 'Canada', 'facility': 'Sunny Hill Health Centre for Children', 'geoPoint': {'lat': 49.24966, 'lon': -123.11934}}, {'city': "St. John's", 'state': 'Newfoundland and Labrador', 'country': 'Canada', 'facility': 'Janeway Health Center', 'geoPoint': {'lat': 47.56494, 'lon': -52.70931}}, {'city': 'Halifax', 'state': 'Nova Scotia', 'country': 'Canada', 'facility': 'IWK Health Centre', 'geoPoint': {'lat': 44.64269, 'lon': -63.57688}}, {'city': 'Barrie', 'state': 'Ontario', 'country': 'Canada', 'facility': "Children's Treatment Network", 'geoPoint': {'lat': 44.40011, 'lon': -79.66634}}, {'city': 'Toronto', 'state': 'Ontario', 'country': 'Canada', 'facility': 'Holland-Bloorview Kids Rehabilitation Hospital', 'geoPoint': {'lat': 43.70643, 'lon': -79.39864}}, {'city': 'Gatineau', 'state': 'Quebec', 'country': 'Canada', 'facility': 'Centre régional de réadaptation La RessourSe', 'geoPoint': {'lat': 45.47723, 'lon': -75.70164}}, {'city': 'Joliette', 'state': 'Quebec', 'country': 'Canada', 'facility': 'Centre de réadaptation Le Bouclier', 'geoPoint': {'lat': 46.0164, 'lon': -73.4236}}, {'city': 'Montreal', 'state': 'Quebec', 'country': 'Canada', 'facility': 'Centre de Réadaptation Marie-Enfant', 'geoPoint': {'lat': 45.50884, 'lon': -73.58781}}, {'city': 'Montreal', 'state': 'Quebec', 'country': 'Canada', 'facility': 'MAB-Mackay Rehabilitation Centre', 'geoPoint': {'lat': 45.50884, 'lon': -73.58781}}, {'city': 'Montreal', 'state': 'Quebec', 'country': 'Canada', 'facility': "Montreal Children's Hospital", 'geoPoint': {'lat': 45.50884, 'lon': -73.58781}}, {'city': 'Montreal', 'state': 'Quebec', 'country': 'Canada', 'facility': 'Shriners Hospital Montreal', 'geoPoint': {'lat': 45.50884, 'lon': -73.58781}}, {'city': 'Québec', 'state': 'Quebec', 'country': 'Canada', 'facility': 'Institut de réadaptation physique du Québec', 'geoPoint': {'lat': 46.81228, 'lon': -71.21454}}, {'city': 'Sherbrooke', 'state': 'Quebec', 'country': 'Canada', 'facility': 'Centre de réadaptation Estrie', 'geoPoint': {'lat': 45.40008, 'lon': -71.89908}}], 'overallOfficials': [{'name': 'Michael I Shevell, MDCM', 'role': 'PRINCIPAL_INVESTIGATOR', 'affiliation': 'McGill University Health Centre/Research Institute of the McGill University Health Centre'}, {'name': 'Maryam Oskoui, MD, MSc', 'role': 'PRINCIPAL_INVESTIGATOR', 'affiliation': 'McGill University Health Centre/Research Institute of the McGill University Health Centre'}]}, 'sponsorCollaboratorsModule': {'leadSponsor': {'name': 'McGill University Health Centre/Research Institute of the McGill University Health Centre', 'class': 'OTHER'}, 'collaborators': [{'name': 'Kids Brain Health Network', 'class': 'UNKNOWN'}, {'name': "Children's Treatment Network", 'class': 'NETWORK'}, {'name': "Montreal Children's Hospital of the MUHC", 'class': 'OTHER'}, {'name': "Alberta Children's Hospital", 'class': 'OTHER'}, {'name': "Women and Children's Health Research Institute, Canada", 'class': 'OTHER'}, {'name': 'Provincial Health Services Authority British Columbia', 'class': 'OTHER'}, {'name': 'IWK Health Centre', 'class': 'OTHER'}, {'name': 'The Hospital for Sick Children', 'class': 'OTHER'}, {'name': 'Holland Bloorview Kids Rehabilitation Hospital', 'class': 'OTHER'}], 'responsibleParty': {'type': 'PRINCIPAL_INVESTIGATOR', 'investigatorTitle': 'Associate Professor, Departments of Pediatrics and Neurology & Neurosurgery', 'investigatorFullName': 'Maryam Oskoui, MD, MSc, FRCPC, FAAN', 'investigatorAffiliation': 'McGill University Health Centre/Research Institute of the McGill University Health Centre'}}}}