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Documents - Board - P & P - 2. Governance / Gouvernance
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HCU - Homocystinuria
MSUD - Maple Syrup Urine Disorder
PKU - Phenylketonuria
TYR - Tyrosinemia Type
UCD - Urea Cycle Disorder
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2.01 Board Structure and Responsibilities
(10)
2.02 Nominating and Electing Officers of the Board
(8)
2.03 Code of Conduct
(0)
2.04 Privacy and Confidentiality Procedures
(0)
2.05 Conflict of Interest Policy
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2.06 Ethics Policy
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2.07 Succession Planning
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2.08 Strategic & Business Planning
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2.09 Memberships CanPKU+ Holds
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2.10 Members of CanPKU+
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2023 2024 Board of Directors and Operations
(bilingue/bilingual)
Author(s):
CanPKU+
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PDF - Board
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PDF - Operational
Ethical and practical considerations related to data sharing when collecting patient reported outcomes in care based child health research
(bilingue/bilingual)
Author(s):
Vanderhout,Shelley ;Potter,Beth ;Smith, Maureen; Butcher, Nancy;Vaters, Jordan; Chakraborty, Pranesh; Adams, John; Inbar?Feigenberg, Michal; Ofringa, Martin; Speechley, Kathy; Trakadis, Yannis; Binik, Ariella
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Purpose The collection and use of patient reported outcomes (PROs) in care-based child health research raises challenging ethical and logistical questions. This paper ofers an analysis of two questions related to PROs in child health research: (1) Is it ethically obligatory, desirable or preferable to share PRO data collected for research with children, families, and health care providers? And if so, (2) What are the characteristics of a model best suited to guide the collection, monitoring, and sharing of these data?
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2022 2023 Board and Organizational Charts
(bilingue/bilingual)
Author(s):
CanPKU+; Chute, Tanya
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2019 2020 Board and Organization Charts
(bilingue/bilingual)
Author(s):
CanPKU+; Chute, Tanya
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2020 2021 Board and Organization Charts
(bilingue/bilingual)
Author(s):
CanPKU+; Chute, Tanya
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2021 2022 Board and Organizational Charts
(bilingue/bilingual)
Author(s):
CanPKU+; Chute, Tanya
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2018 2019 Board and Organization Charts
(bilingue/bilingual)
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CanPKU+; Chute, Tanya
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2017 2018 Board and Org Charts
(bilingue/bilingual)
Author(s):
CanPKU+; Chute, Tanya
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Canadian Consensus Framework for Ethical Collaboration
(bilingue/bilingual)
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IMC
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2014 Board and Management Charts
(bilingue/bilingual)
Author(s):
CanPKU+; Chute, Tanya
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