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Why should I get genetic testing?
(English)
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Author(s): NORD, NPKUA
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PKU Registry
(English)
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Author(s): Inform Rare; CanPKU+
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Le Registre Canadien de la PCU
(English)
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Author(s): Inform Rare; CanPKU+
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Patient Partners and Parent Advisory Group Update
(English)
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Author(s): Inform Rare
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CO-DEVELOPING LONGITUDINAL PATIENT REGISTRIES FOR PHENYLKETONURIA AND MUCOPOLYSACCHARIDOSES IN CANADA
(English)
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Author(s): Adams, John,; Angel,Kim; Mitchell, John; Chakraborty, Pranesh; Potter, Beth; Inbar-Feigenberg, Michal; Stockler, Sylvia; Lamoureux, Monica; Howie, Alison; Pace, Alex; Butcher, Nancy; Rockman-Greenberg, Cheryl; Hayeems, Robin; Laberge, Anne-Marie et al
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Description: Thierry Lacaze-Masmonteil, Jeff Round, Martin Offringa, Maryam Oskoui, Andreas Schulze, Kathy Speechley, Kednapa Thavorn, Yannis Trakadis, Kumanan Wilson
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Parent Advisory Group Recruitment
(English)
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Author(s): Inform Rare
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Description: Recruitment form - Oct 2023
Now closed
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Ethical and practical considerations related to data sharing when collecting patient reported outcomes in care based child health research
(English)
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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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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?
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Designing patient-oriented longitudinal disease registries for children with rare metabolic diseases in Canada
(English)
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Author(s): Wyatt A; Adams j; Angel K; Lamoureux; Howie A; Saad A; Butcher NJ; Greenberg C; Hayeems RZ; Inbar-Feigenberg M; Laberge AM; Lacaze-Masmonteil T; McCabe C; Mitchell JJ; Offringa M; Oskoui, Ruth ; Speechley,K; Stockler S , T
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Description: Wyatt A, Adams J, Angel K, Lamoureux M, Howie A, Saad A, Butcher NJ, Greenberg C, Hayeems RZ, Inbar-Feigenberg M, Laberge AM, Lacaze-Masmonteil T, McCabe C, Mitchell JJ, Offringa M, Oskoui M, Ruth C, Speechley K, Stockler S, Thavorn K, Schulze A Trakadis Y Wilson K, Chakraborty P, Potter BK, & on behalf of the INFORM RARE Network
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