Processing Search... May Take A Few Moments
Go!
Join
|
Login
Menu
Home
C | Community
Connect
Information about Membership
Become a Member
Stories
UCD Community
PKU Community
HCU Community Stories
MSUD Community Stories
Networking Groups
Events
Building Bridges - June 2026
Call for Abstracts/Presenters
Camp MagniPHEque - Sept 2026
Past Events
Avery's Ride for PKU - 2014
A | Advocacy
Advocacy at Home
Advocacy Toolkit
Access
Advocacy - Sephience
Getting access to Pegzilarginase
R | Research and Innovation
Registries
HCU Registry
MSUD Registry
PKU Registry
UCD Registry
Research Studies
HCU Studies
Harmony NCT06247085
MSUD Studies
NCT04828863
UCD Studies
NCT00237315
PKU Studies
JNT 517 - NCT06971731
PALomino NCT05579548
NCT05099640
Publications
Innovation
Digital Tools - Apps
Sources and Methodology
Therapies and Treatments
Therapies - PKU
Therapies - HCU
Therapies - MSUD
Therapies - UCDs
Researchers and Partners Hub
E | Education
Understanding the Disorder
Understanding PKU
Understanding HCU
Understanding MSUD
Understanding UCDs
Nourish Landing
Low Protein Basics
Grocery Shopping
Medical Nutrition
Recipes and Meal Inspiration
Clinic & Clinical Care
Flourish Landing
Physical & Energy Balance
Sustainable Living
Social & Everyday Life
Mental Wellbeing
Life Stages and Milestones
New Diagnosis
Infancy and Early Childhood
Children and Youth
Teens
Adults
Aging with a Metabolic Disorder
Women's Health
Caregiver
S | Support and Sustainability
Community Supports
Travel Scholarships
Travel Scholarship and Volunteering
Disability Tax Credit - Basic Information
CanPKU+ Sustainability
Donate
Fundraising
National Spare for Rare
Partnerships with Clinics
Partnership with Sponsors
Our Valuable Sponsors
Partnerships In Kind
Ways to make payments
.
Un câlin pour toi
Envoyer un câlin
Rare Awareness Radio Podcasts
Sending Hugs
Sending You Hugs
Sending Big Hugs
Waiver - Teen Lounge/ détente des adolescent
Waiver - Childcare-Programme supervisér
Waiver - photo, vidéo, audio
Waiver - Shuttle/Navette
Documents - Board storage - P & P - 2. Governance / Gouvernance
Results:
10 Documents
Sort By:
Title
|
Author
Filter
Document Type...
bilingue/bilingual
Document
English
Francais
Links
Video
Keyword...
HCU - Homocystinuria
MSUD - Maple Syrup Urine Disorder
PKU - Phenylketonuria
TYR - Tyrosinemia Type
UCD - Urea Cycle Disorder
Document Sub-Topics
2.01 Board Structure and Responsibilities
(12)
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
(0)
2.06 Ethics Policy
(0)
2.07 Succession Planning
(1)
2.08 Strategic & Business Planning
(0)
2.09 Memberships CanPKU+ Holds
(0)
2.10 Members of CanPKU+
(0)
Board Minutes
(0)
Memberships
(0)
2023 2024 Board of Directors and Operations
(bilingue/bilingual)
Author(s):
CanPKU+
Rating:
No Rating
Read Reviews
PDF - Board
|
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
Rating:
No Rating
Read Reviews
Description:
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?
PDF
2022 2023 Board and Organizational Charts
(bilingue/bilingual)
Author(s):
CanPKU+; Chute, Tanya
Rating:
No Rating
Read Reviews
XLS
|
PDF
|
PDF
2019 2020 Board and Organization Charts
(bilingue/bilingual)
Author(s):
CanPKU+; Chute, Tanya
Rating:
No Rating
Read Reviews
PDF
|
PDF
2020 2021 Board and Organization Charts
(bilingue/bilingual)
Author(s):
CanPKU+; Chute, Tanya
Rating:
No Rating
Read Reviews
XLS
|
XLS
|
PDF
2021 2022 Board and Organizational Charts
(bilingue/bilingual)
Author(s):
CanPKU+; Chute, Tanya
Rating:
No Rating
Read Reviews
JPG
|
XLS
|
PDF
|
jpg
2018 2019 Board and Organization Charts
(bilingue/bilingual)
Author(s):
CanPKU+; Chute, Tanya
Rating:
No Rating
Read Reviews
PDF
2017 2018 Board and Org Charts
(bilingue/bilingual)
Author(s):
CanPKU+; Chute, Tanya
Rating:
No Rating
Read Reviews
PDF
|
PDF
Canadian Consensus Framework for Ethical Collaboration
(bilingue/bilingual)
Author(s):
IMC
Rating:
No Rating
Read Reviews
PDF
2014 Board and Management Charts
(bilingue/bilingual)
Author(s):
CanPKU+; Chute, Tanya
Rating:
No Rating
Read Reviews
PDF
|
PDF