Governance
Select a committee to learn more:
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CIHR Advisory Committee on Ethical, Legal and Social Issues for the CLSA
The mandate of the Canadian Institutes of Health Research (CIHR) Advisory Committee on Ethical, Legal and Social Issues (ELSI) for the Canadian Longitudinal Study on Aging (CLSA) is to:
- provide independent, critical advice to the Scientific Management Team leading the CLSA on actions and best practices to address ethical, legal and social issues during the five-year implementation phase of the CLSA;
- contribute to the advancement of ELSI knowledge related to the CLSA and similar CIHR-funded, population-based, longitudinal studies, databases and biobanks; and
- disseminate ELSI knowledge to the external community of relevant stakeholders.
Further information about the Advisory Committee on Ethical, Legal and Social Issues for the CLSA can be found at: http://www.cihr-irsc.gc.ca/e/40803.html
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Scientific Management Team (SMT)
The CLSA Scientific Management Team (SMT) is the principal decision making body of the CLSA, providing overall scientific leadership and primary responsibility for oversight of all CLSA activities.
The SMT meets at least weekly via teleconference and in-person six times a year to review and monitor all aspects of study progress and to oversee:
• Strategic planning and priority setting for scientific direction and output;
• Development of strategic partnerships and mechanisms to ensure ongoing funding of the study;
• Development of the strategy for managing change in research team and other personnel;
• Engaging the CLSA Scientific Advisory Board and Operations Committee to develop plans for integrating future technological changes required for study of this length and magnitude;
• Engage with the CLSA Information Technology (IT) team to develop IT solutions for data storage, security, management and access;
• Engaging the Ethical Legal and Societal Implications committee and the Primary and Secondary Data Access and Utilization Committee for privacy, confidentiality and data access aspects of the CLSA;
• Oversee the management and storage of data in collaboration with IT team;
• Management of the CLSA supported intellectual property (IP);
• Budgetary and financial aspects of the CLSA and budget projections;
• Communications and knowledge translation;
• Ethics, security, and privacy;
• Capacity building and training; and
• Strategic decisions related to the maintenance and operation of the infrastructure.
The SMT is composed of the CLSA Lead Principal Investigator, Co-Principal Investigators, and the CLSA Managing Director. The CIHR/CLSA Associate Director is an ex officio member of the SMT.
The SMT liaises with the CLSA-established Advisory Council and Scientific Advisory Board, the International Scientific Advisory Board, and the CIHR-established Ethical, Legal, and Social Issues Committee and Scientific Oversight Committee at least annually, or as required. The SMT will present an annual report reflecting mutually established performance indicators and research progress to the Scientific Oversight Committee as part of the accountability framework.
The Operations Committee and the Primary and Secondary Data Access and Utilization Committee report to the SMT
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Operations Committee (OC)
The Operations Committee (OC) is the primary CLSA scientific and study implementation advisory committee. The mandate of the OC includes the development, operationalization, and maintenance of the local investigative scientific leadership, CLSA infrastructure and equipment, all of which are central to the functioning of the CLSA and to day-to-day field operations. The OC will provide the principal mechanism for both DCS and enabling site (NCC, CATI, SAC, GEC, BBC) directors to communicate on a regular basis, allowing for ongoing troubleshooting and problem solving related to the scientific and functional operations of the study including local research personnel changes by creating local teams that have mix of senior, mid-career and junior researchers, as well as to reinforce optimal usage, access, and identification of existing new technologies, maintenance and upgrade requirements. The Operations Committee will serve as a vehicle to promote integrative research and training of highly qualified personnel.
The OC will support site implementation and on-going operations. The committee will meet regularly to review operations and:
• Implement plans and mechanisms, and advice the SMT about plans to manage local personnel change;
• Develop methodological plans to integrate new technologies into day-to-day operations of the CLSA data collection and analyses;
• Monitor and problem solve as needed, with respect to the preparation and activation of the individual sites in implementing standardized study protocols and standard operating procedures;
• Monitor and problem solve with respect the ongoing performance of individual sites and the maintenance of infrastructure and equipment;
• Enhance research capacity and promotion of the training mandate within and across infrastructure sites;
• Support the integration of consistent communications within and across infrastructure sites and oversee strategies for communications with the larger scientific community; and
• Ensure that CLSA policies and procedures are implemented in a consistent manner across site boundaries to meet or exceed best practices in the areas of privacy, security, and research.The composition of the OC is determined according to infrastructure representation within the CLSA. Local site directors (DCS, NCC, BPC, CATI, GEC, and SAC) constitute the OC. Members are persons who are key to the oversight and functioning of the local infrastructure. The committee is chaired initially by CLSA co-PI Dr. Susan Kirkland. Once the committee is fully established and functional, a chair will be selected internally by the members. The OC will meet monthly via teleconference or video link, and at least once annually face-to-face.
The OC reports to the SMT, via the Chair. The OC has two standing sub-committees, the Training Committee and the Knowledge Translation and Communications Committee.
The committee is chaired by Andrew Wister from Simon Fraser University.
The following researchers comprise the OC:
Cynthia Balion (McMaster University)
Larry Chambers (University of Ottawa)
Max Cynader (University of British Columbia)
Lauren Griffith (McMaster University)
David Hogan (University of Calgary)
Jeff Jutai (University of Ottawa)
Susan Kirkland (Dalhousie University)
Michael Kobor (University of British Columbia)
Verena Menec (University of Manitoba)
Gerry Mugford (Memorial University of Newfoundland)
Mark Oremus (McMaster University)
Hélène Payette (Université de Sherbrooke)
Margaret Penning (University of Victoria)
Parminder Raina (McMaster University)
Andrew Wister (Simon Fraser University)
Christina Wolfson (McGill University)The OC reports to the SMT, via the Chair. The OC has two standing sub-committees, the Training Committee and the Knowledge Translation and Communications Committee.
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CLSA Advisory Council
The CLSA Advisory Council (AC) provides overall guidance and advice to the Scientific Management Team on policy and promotional aspects of the study. Responsibilities include identifying and promoting opportunities for on-going funding for the research operations. Members of the CLSA Advisory Council are expected to advocate for the CLSA in the public and private sectors, and to establish mechanisms to ensure that the outcomes of the CLSA research are disseminated, adopted and integrated into health and social care policies, both economic and social.
The Advisory Council provides advice on:
• Overall governance of the CLSA;
• The processes for managing change in research leadership of the study;
• Risk management;
• Study promotion;
• Adding value through the research platform;
• Knowledge generation to inform policy development;
• Knowledge uptake; and
• Long term sustainability of the study through public or private partnerships.The CLSA Advisory Council will have broad-based membership, including key stakeholders from federal and provincial governments, representatives from health charities, the private sector and lay members. Members will serve a fixed term, with the possibility of re-appointment. Once the AC is fully established and functional, a new chair will be selected by AC members.
The members of AC will be selected by SMT and will meet annually. Members serve a three year term, with the possibility of re-appointment.
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Scientific Advisory Board
The Scientific Advisory Board (SAB) is composed of leading researchers in aging and health from around the world. This multidisciplinary SAB provides advice and direction regarding the succession plan, science, managing technology change, and data storage and use mandates of the CLSA. They share their expertise on scientific, logistic, and ethical issues to assist in meeting the study aims.
The SAB advises and provides direction to SMT on:
• Strategic plans and priorities:
• International best practices for longitudinal research;
• Scientific and operational challenges including personnel change, integrating new technologies and data management;
• Integrative aspects of the research program including knowledge translation, the training of highly qualified personnel, and international relations.The committee meets at least once per year face-to-face. Members serve a three year term, with the possibility of re-appointment.
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Training Committee
The Training Committee (TC) is responsible for promoting the training vision of the CLSA via the development and implementation of educational policies and programs which utilize the infrastructure. A key role of the TC is to liaise with existing institutional programs in aging and population health, and to integrate the training within the infrastructure platform. Members are selected from the pool of CLSA investigators, based on their relevant expertise and interest, with an aim to achieve multidisciplinary and regional representation.
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Knowledge Translation and Communications Committee
The Knowledge Translation and Communications Committee (KTCC) are responsible for promoting the ongoing sharing of information among primary and end users of the infrastructure. Overseen by the KTCC, the communications strategy will be developed and implemented, including but not limited to the development of annual reports, a CLSA newsletter for researchers, trainees, participants and the general public, maintenance of the CLSA website, and the use of video conferencing to monitor quality control and standardization among research staff. Members are selected from the pool of CLSA researchers, based on their relevant expertise and interest. The committee is supported by a Communications Manager who is responsible for coordinating the activities of the committee and implementing the strategy.
The Knowledge Translation and Communications Committee (KTCC) (Appendix H) will be responsible for developing and promoting the CLSA’s dissemination strategy. The strategy will involve the following overarching components:
1) Present research findings at national and international conferences and publish the findings in peer-reviewed scientific and clinical journals;
2) Circulate lay summaries of research findings directly to clinicians, governments (e.g., ministries of health, public health departments), health charities, CIHR institutes, and citizens’ advocacy organizations;
3) Post all disseminated material such as research findings, working papers, reports, published journal articles, and lay summaries on the CLSA web site; and
4) Produce regular newsletters for participants to describe the study’s progress and highlight new and important findings.
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Intellectual Property and Commercialization Committee
The Intellectual Property and Commercialization Committee (IPCC) will monitor and manage the CLSA supported intellectual property (IP). The ownership of CLSA-supported intellectual property (IP) rests with the participating institutions where the IP is created. Inventors and co-inventors will be identified and handled in accordance with the policies of the relevant participating institutions.
Inventors and participating institutions will be required to disclose IP to the CLSA IPCC.
The IPCC will be composed of CLSA members from the pool of CLSA researchers, and institutional bodies responsible for IP. The committee will meet as required, at least once annually.
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CLSA Community Liaison Committee
The Community Liaison Committee (CLC) will provide knowledge, insight and advice to the SMT and other CLSA standing committees on multiple aspects of the study from the perspective of the lay individual.
The intent in establishing the CLC is to broaden the input from the lay public, who are typically represented by one or two individuals sitting on committees. The CLC will liaise as a group with CLSA standing committees on an ongoing basis. The members should have no vested interest in the CLSA. At least 50% of the committee is composed of individual lay members with no particular affiliation. In the instance where individuals are selected based on their involvement with stakeholder organizations or groups, members will not be asked to represent the organization. The CLC will meet at least quarterly, including once annually face to face. Members will serve a three year term, with the possibility of reappointment. -
Data and Sample Access Committee (DSAC)
The Data and Sample Access Committee (DSAC) is the CLSA body responsible for the review of applications for access to, and use of, alphanumeric data and/or biological samples, collected as part of the Canadian Longitudinal Study on Aging. The DSAC oversees all aspects of data usage, storage, and security. The DSAC ensures participants’ privacy and confidentiality are guarded in accordance with Memorandums of Understanding (MOUs) with Statistics Canada and other institutions as required. As well, the DSAC takes responsibility for implementing policies and procedures consistent with the principles described in the CIHR Best Practices for Protecting Privacy in Health Research, Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans and the Canadian Standards Association Privacy Code.
The DSAC is responsible for:
The review of all applications to the CLSA for:
- Access to alphanumeric data;
- Access to biological samples;
- The conduct of sub studies that are ancillary to the CLSA;
- Monitoring the progress of the studies for which access has been granted.
The committee is initially chaired by CLSA co-PI Dr. Christina Wolfson. The committee membership is composed primarily (no less than 75% of members) of researchers not involved in the CLSA and reflects the diversity of disciplines within the CLSA research program. Researcher members of the DSAC are drawn from individuals with expertise in the following disciplines: genetics/epigenetics; biobanking and biomarkers; social aspects of aging; psychology/neuropsychology; statistics/biostatistics; ethics; health policy; and epidemiology. The committee is supported by a DSAC Coordinator who coordinates the activities of the committee and maintains relevant documentation.
The DSAC meets monthly by teleconference to review submitted applications and on an ad hoc basis by teleconference /videoconference as needed. At least one face to face meeting will take place annually.
The DSAC reports directly the CLSA Scientific Management Team (SMT) via the Chair. The Chair of the DSAC will also present an annual report to the CIHR International Scientific Oversight Committee.
The interim chair of the DSAC is Christina Wolfson, co-PI.
The following researchers comprised the DSAC:
Cynthia Balion (McMaster University)
Iranga Chikuru (CIHR ex officio)
Max Cynader (University of British Columbia
Pierrette Gaudreau (University of Montreal)
Joan Lindsay (University of Ottawa)
Verena Menec (University of Manitoba)
Saminda Pathmasiri (Public Population Project in Genomics)
Margaret Penning (University of Victoria)
Brent Richards (McGill University)
Harry Shannon (McMaster University)The DSAC reports directly the CLSA Scientific Management Team (SMT) via the Chair. The Chair of the DSAC will also present an annual report to the CIHR International Scientific Oversight Committee.
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CIHR International Oversight Committee (IOC)
The mandate of the International Oversight Committee on the Canadian Longitudinal Study on Aging (CLSA) is to provide the Canadian Institutes of Health Research (CIHR) with expert advice as well as independent ongoing oversight and evaluation of the CLSA according to internationally recognized standards of excellence for science and leadership.
Further information about the CIHR International Oversight Committee on the CLSA can be found at: http://www.cihr-irsc.gc.ca/e/42621.html