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Cerebral Palsy Registry

We are creating a national registry of information about children with cerebral palsy.
About

The Cerebral Palsy Registry (BC Division) is a part of the Canadian Cerebral Palsy Registry, a confidential, nationwide collection of information about people with cerebral palsy in Canada. 

The information collected is held in a secure database and is non-identifiable. This will be the first national cerebral palsy registry in North America.

Who are we looking for?

  • Children with a diagnosis of Cerebral Palsy (CP)
  • Children born on or after January 1, 2009

Aims

The main aims of the CP Registry are:

  • to gain further understanding of the risk factors and causes of CP
  • to understand how often children are diagnosed with CP, and where they live in BC and in Canada  
  • to better understand parents' perspectives on their child's care and how services are provided to them
Data Collection, Storage, & Access


The written data on the paper files will be kept in a locked file cabinet at Sunny Hill Health Centre for Children. The de-identified data from the different provincial sites will be uploaded into the Canadian Cerebral Palsy Registry using a code to ensure privacy of data, in accordance with the research protocol. Specifically, all of the data collected regionally will be entered in the electronic data bank using REDCap, specialized software designed for medical data collection and distributed by Vanderbilt University. REDCap is web based and uses 128 bit data encryption and provides role based security requiring a user ID and password for access.

The central databank is located in Edmonton at the University of Alberta Hospital and the data collection system will be housed on servers provided by the Women & Children’s Health Research Institute in Edmonton. The servers are located in a secure data centre in the basement of Edmonton’s University Hospital. Data integrity is protected by multiple redundant power and cooling systems, RAID disk technology and regular back-up to tape.

The Women & Children’s Health Research Institute (WCHRI) in Edmonton in collaboration with the Neuroinformatics core of NeuroDevNet at UBC will be responsible for the day to day operations of the database, inclusive of IT support. Dr Andersen, a co-investigator from the University of Alberta, the WCHRI and the Neuroinformatics core will ensure that the CP data is used responsibly and respectfully and that privacy is safeguarded. This includes ensuring only agreed personnel have access to the information held in the Canadian Cerebral Palsy Registry.

The WCHRI of the University of Alberta agrees to hold in confidence all of the data received from the different centers across Canada. The data uploaded to the Canadian Cerebral Palsy Registry will not contain any personal identifying information. All of the parties contributing data to the Registry will adhere to and comply with applicable laws and regulations regarding protection of personal information.

The Canadian Cerebral Palsy Registry will operate for as long as the research team can ensure its proper management, as stipulated by the Canadian Institute of Health Research and by Health Canada. Presently, the Canadian Cerebral Palsy Registry is funded by the NeuroDevNet Networks of Centres of Excellence and by the Public Health Agency of Canada and will continue to operate for as long as funding is available. In the event that funding is not renewed and that no other funding is secured, the de-identified data will be conserved on an Encrypted Digital storage device and given to the lead researcher, Dr Michael Shevell, for safe keeping. The data from the individual participating sites will be stored on separate Encrypted Digital storage devices and returned to the persons responsible at each site. The data on the Encrypted Digital storage devices given to the individual participating sites and to the lead researcher could be migrated into a new database if new funding would become available.

Governance

Management of the Registry:

Dr Michael Shevell, the lead investigator overseeing the Canadian Cerebral Palsy Registry, shall be responsible for all aspects of the management of the Canadian Cerebral Palsy Registry. All of the parties contributing data to the registry shall exercise due care in complying with the principles of Good Clinical Practice as reflected in the ICH-GCP Guidelines (1996) and will abide by CIHR guidelines governing research involving human subjects. All parties will observe the methodology described in the Research Protocol, when collecting the data for the registry. Any changes to the study protocol must obtain prior written approval from the lead investigator.

The target enrolment for the different participating institutions in the Canadian Cerebral Palsy Registry has been described in the Research Protocol. The parties agree to try to recruit the projected number of study subjects, although a higher number of study subjects may also be recruited.

The Co-Investigators in the different provinces shall prepare and maintain accurate and complete records of the work performed in connection with the Canadian Cerebral Palsy Registry, in accordance with generally accepted research practices.

Provisions to Ensure Security and confidentiality:

The de-identified data from the different provinces will be uploaded into the Canadian Cerebral Palsy Registry using a code to ensure privacy of data, in accordance with the research protocol. Specifically, all of the data collected regionally will be entered in the electronic data bank using RedCap, a specialized software designed for medical data collection and distributed by Vanderbilt University. RedCap is web based and uses 128 bit data encryption and provides role based security requiring a user ID and password for access. The central databank is located in Edmonton at the University of Alberta Hospital and the data collection system will be housed on servers provided by the Women & Children’s Health Research Institute (WCHRI) in Edmonton. The servers are located in a secure data centre in the basement of Edmonton’s University Hospital. Data integrity is protected by multiple redundant power and cooling systems, RAID disk technology and regular back-up to tape. The Women & Children’s Health Research Institute in Edmonton in collaboration with the Neuroinformatics core of NeuroDevNet at UBC, will be responsible for the day to day operations of the database, inclusive of IT support. Dr Andersen, the WCHRI and the Neuroinformatics core will ensure that the CP data is used responsibly and respectfully and that privacy is safeguarded. This includes ensuring only agreed personnel have access to the information held in the Canadian Cerebral Palsy Registry. These individuals are named in Appendix A, attached hereto. These names may be modified from time to time by mutual agreement of the parties.

Outside researchers may obtain access to the de-identified data but only with permission from the Canadian Cerebral Palsy Registry Policy and Research Group and the University of Alberta ethics committee. The WCHRI of the University of Alberta agrees to hold in confidence all of the data received from the different centers across Canada. The data uploaded to the Canadian Cerebral Palsy Registry will not contain any personal identifying information. All of the parties contributing data to the Registry will adhere to and comply with applicable laws and regulations regarding protection of personal information.

Ownwership and Data Utilization:

Each center entering data into the national registry is regarded as an independent contributor of the CP data and retains all rights to their data. The data generated at each center shall remain at all times the property of each individual contributing institution. The data entered into the Canadian Cerebral Palsy Registry shall only be used for scientific purposes and shall not be used, directly or indirectly, for commercial purposes.

Procedures to follow for participants who wish to withdraw their data:

Participants can withdraw at any point. In the event that a parent would like to withdrawdata from the central data bank, he or she would contact the site study coordinator who would then retrieve the child's code, used to enter de-identified data in the electroniccentral data bank. This code will be linked to the child's personal data and the personal data will only be accessible to the on-site study coordinator, where the child will have been registered. The on-site study coordinator will then contact the people responsible for the data bank at the University of Alberta providing them with the child's de-identifying code, requesting that they destroy the data associated with this code.

Provisions in the Event of the Termination of the Registry:

Presently, the Canadian Cerebral Palsy Registry is funded by the NeuroDevNet Networks of Centres of Excellence and will continue to operate for as long as the research team can ensure its proper management. In the event that funding is not renewed and that no other funding is secured, the de-identified data will be conserved on an Encrypted Digital storage device and given to the lead researcher, Dr Michael Shevell, for safe keeping. The data from the individual participating sites will be stored on separate Encrypted Digital storage devices and returned to the persons responsible at each site. The data on the Encrypted Digital storage devices given to the individual participating sites and to the lead researcher could be migrated into a new database if new funding would become available.

Publications:
Any researcher with published articles making reference to the data or using the data from the Canadian Cerebral Palsy Registry, will acknowledge the Registry, NeuroDevNet and the Public Health Agency of Canada, and will give credit to the Canadian Cerebral Palsy Registry researchers as scientifically appropriate, based on any direct contribution they may have made to the work.

Canadian Cerebral Palsy Registry Policy and Research Group:

Individuals from each of the provinces contributing data to the Registry or providing support to the Registry, will be appointed to the Canadian Cerebral Palsy Registry Policy and Research Group. The role of the Canadian Cerebral Palsy Registry Policy and Research Group will be:

1. To provide strategic direction on the ongoing development of the Canadian Cerebral Palsy Registry. The focus of the strategic direction will mainly deal with the following subjects:

    • The inclusion criteria for registrations into the Canadian Cerebral Palsy Registry
    • Ascertainment procedures for registration
    • Reporting and disseminating information contained within the Canadian Cerebral Palsy Registry
    • Collaboration with other registries and databanks
    • Determination of the direction of research and use of the Canadian Cerebral Palsy Registry data
    • Development of a research policy to ensure that issues of intellectual property pertaining to the Canadian Cerebral Palsy Registry are appropriately managed and that the Canadian Cerebral Palsy Registry is acknowledged appropriately

2. To facilitate research projects in this field by:

    • Reviewing and considering all research applications submitted;
    • Approving all research proposals prior to obtaining ethical approval;
    • Maintaining appropriate records of all proposed research projects;
    • Referring projects to the relevant Ethics Committee(s) for approval.

The members of the Canadian Cerebral Palsy Registry and Research Group will abide by the following governance charter guidelines

  • Good governance is essential to maintaining trust between members
  • Members should feel free to ask searching and revealing question
  • At all times, members will act to promote the values and attitudes that reflect accountability, professionalism and personal responsibility and members will act in the interests of the CP community
  • Members will not take improper advantage of their involvement in the Canadian Cerebral Palsy Registry or improperly disclose information exchanged between members and will disclose any conflicts of interest, perceived or otherwise, for resolution
  • Members should demonstrate an enthusiasm, interest and energy that contribute to the ongoing success of the Canadian Cerebral Palsy Registry andthe achievement of its goals
  • Members will ensure that issues of intellectual property pertaining to the Canadian Cerebral Palsy Registry are appropriately managed in line with the guidelines provided by the International Committee of Medical Journal Editors http://www.icmje.org#author
Members to the Registry

The following individuals will have access to the data contained in the Canadian Cerebral Palsy Registry:

  1. Members of the University of Alberta ethics committee; members of other ethics committees involved in the project
  2. Project leader: Dr Michael Shevell
  3. Registry co-investigators: 
    Dr John Andersen
    Dr Darcy Fehlings
    Dr Jerome Yager
    Dr Helly Goez
    Dr Annette Majnemer
    Dr David Buckley
    Dr Ellen Wood
    Dr Esias van Rensburg
    Dr Kishore Mulpuri
  4. Personnel from the Neuroinformatics core and the Women and Children's Health Research Institute:
        Dr Elodie Portales-Casamar
        Ms Pamela Marples
        Mr Rick Watts
        Dr Lawrence Richer
        Mr Stephen Walsh
        Mr Nichoals St-George
  5. The national project coordinator
  6. The provincial project coordinators will have access to the data from their respective sites.

Any other lead researcher who joins the registry will also be granted access to the data. Outside researchers may obtain access to the de-identified data but only with permission from the lead researchers and the University of Alberta ethics committee.



The Canadian Cerebral Palsy Registry will operate for as long as the research team can ensure its proper management, as stipulated by the Canadian Institute of Health Research and by Health Canada.

Presently, the Canadian Cerebral Palsy Registry is funded by the NeuroDevNet Networks of Centres of Excellence and by the Public Health Agency of Canada and will continue to operate for as long as funding is available.

Funding for this publication was provided by the Public Health Agency of Canada. The opinions expressed in this publication are those of the authors/researchers and do not necessarily reflect the official views of the Public Health Agency of Canada.

 
 

FAQs

How do I register my child?

If you have a child who has a diagnosis of cerebral palsy (CP) and who was born after January 1, 2009, you can register in a number of ways:

  • Give permission for your physician or health care professional to send your contact information to the project coordinator so that you can receive more detailed information in person
  • Contact the project coordinator directly so that you can receive more detailed information in person
  • If your child is identified as a candidate for the CP Registry and you receive a letter from the principal investigator with more information about the registry you can discuss further with the project coordinator once you are contacted

When you meet the project coordinator, you will have the option of participating in the registry. The project coordinator will review a “consent to participate” form that will explain the registry in detail. The coordinator will answer any questions you might have about the study. If you are unable to meet in person with the coordinator, the consent form can also be explained over the phone and mailed to you. At this point you are completely free to participate in the registry or refuse to participate. Your child’s medical care and his or her relationship with the physician concerned as well as with any other professionals will not be affected in any way.

Who is eligible to register?

All children with a diagnosis of CP born in 2009 or later and who reside in Canada are eligible to be registered in the CP Registry after the age of 2. The inclusion of age of 2 has been chosen as the diagnosis of CP is often difficult to confirm prior to this age. Children with CP born prior to 2009 will be excluded from the registry as 2009 has been chosen as the starting point in BC.

Why do we need a CP Registry?

Cerebral palsy is a disorder of movement and posture resulting from damage to the developing brain. It is the most common cause of physical disability in children in Canada. We want to better understand the causes of CP in BC and across Canada. We also want to know how often children are being diagnosed with CP and where they live in the different regions of BC and across the different provinces of Canada. By looking at this information across different regions, we might be able to find risk factors and understand more about the causes of CP. The CP Registry will provide a coordinated data collection system in Canada to increase the scope of research into CP and improve the quality of research by providing access to a large population sample.

 Can I change my mind about participating in the registry?

Yes.
Your participation in the CP Registry is voluntary. You will be asked to provide written consent to have your information included into the registry. You may also withdraw at any point. If you would like to withdraw your child’s information, contact the BC project coordinator who will remove your child’s non-identified information from the central web-based databank. At the local site, any paper copies will also be destroyed. Withdrawal from the registry will not disadvantage your child in any way or affect services being received.

What about my privacy?

We respect your privacy. The information you provide to the Canadian CP Registry is strictly confidential. Your personal information will only be seen by the principal investigator and the project coordinator in BC. The information data that will be uploaded into the Canadian CP Registry will NOT contain any personal identifying information. Your personal or contact details will never be provided to researchers or anyone else unless you specifically indicate it is okay to do so.

What about published information?

When the results of the studies are published, you will be given the option of receiving either a copy of the published manuscripts or a lay summary of the articles prepared by the research team. You are also invited to browse the NeuroDevNet site www.neurodevnet.ca where research results will be posted.

Other questions?

If you have other questions, please email or phone the BC Project Coordinator.

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SOURCE: Cerebral Palsy Registry ( )
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