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Co-developing longitudinal patient registries for phenylketonuria and mucopolysaccharidoses in Canada Adams, John; Angel, Kim; Mitchell, John J.; Chakraborty, Pranesh; Potter, Beth K.; Inbar-Feigenberg, Michal; Stockler, Sylvia; Lamoureux, Monica; Howie, Alison; Pace, Alex; Butcher, Nancy J.; Rockman-Greenberg, Cheryl; Hayeems, Robin; Laberge, Anne-Marie; Lacaze-Masmonteil, Thierry; Round, Jeff; Offringa, Martin; Oksoui, Maryam; Schulze, Andreas; Speechley, Kathy; Thavorn, Kednapa; Trakadis, Yannis; Wilson, Kumanan Share Save
Family-centred care interventions for children with chronic conditions: A scoping review Chow, Andrea J.; Saad, Ammar; Al-Baldawi, Zobaida; Iverson, Ryan; Skidmore, Becky; Jordan, Isabel; Pallone, Nicole; Smith, Maureen; Chakraborty, Pranesh; Brehaut, Jamie; Cohen, Eyal; Dyack, Sarah; Gillis, Jane; Goobie, Sharan; Greenberg, Cheryl R.; Hayeems, Robin; Hutton, Brian; Inbar-Feigenberg, Michal; Jain-Ghai, Shailly; Khangura, Sara; Mackenzie, Jennifer J.; Mitchell, John J.; Moazin, Zeinab; Nicholls, Stuart G.; Pender, Amy; Prasad, Chitra; Schulze, Andreas; Siriwardena, Komudi; Sparkes, Rebecca N.; Speechley, Kathy N.; Stockler, Sylvia; Taljaard, Monica; Teitelbaum, Mari; Trakadis, Yannis; Van Karnebeek, Clara; Walia, Jagdeep S.; Wilson, Kumanan; Potter, Beth K. Share Save
Co-developing The Canadian MPS Registry: A longitudinal rare disease patient registry Mitchell, John J.; Inbar-Feigenberg, Michal; Angel, Kim; Chakraborty, Pranesh; Lamoureux, Monica; Adams, John; Potter, Beth K.; Stockler-Ipsirolgu, Sylvia; Howie, Alison H.; Pace, Alex; Butcher, Nancy J.; Greenberg, Cheryl; Hayeems, Robin; Laberge, Anne-Marie; Round, Jeff; Offringa, Martin; Oskoui, Maryam; Ruth, Chelsea; Schulze, Andreas; Speechley, Kathy; Thavorn, Kednapa; Trakadis, Yannis; Wilson, Kumanan; Lacaze, Thierry Share Save
Trajectories of parent well-being in children with drug-resistant epilepsy Smith, Mary Lou; Puka, Klajdi; Speechley, Kathy N.; Ferro, Mark A.; Connolly, Mary B.; Major, Philippe; Gallagher, Anne; Almubarak, Salah; Hasal, Simona; Ramachandrannair, Rajesh; Andrade, Andrea; Xu, Qi; Leung, Edward; Snead III, O. Carter; Widjaja, Elysa Share Save
A longitudinal cohort study of mediators of health-related quality of life after pediatric epilepsy surgery or medical treatment Smith, Mary Lou; Puka, Klajdi; Speechley, Kathy N.; Ferro, Mark A.; Connolly, Mary B.; Major, Philippe; Gallagher, Anne; Almubarak, Salah; Hasal, Simona; Ramachandrannair, Rajesh; Andrade, Andrea; Xu, Qi; Leung, Edward; Snead, O. Carter, III; Widjaja, Elysa Share Save
Ethical and practical considerations related to data sharing when collecting patient-reported outcomes in care-based child health research Vanderhout, Shelley; Potter, Beth K.; Smith, Maureen; Butcher, Nancy J.; Vaters, Jordan; Chakraborty, Pranesh; Adams, John; Inbar-Feigenberg, Michal; Offringa, Martin; Speechley, Kathy; Trakadis, Yannis; Binik, Ariella Share Save
Transgender Youth Referred to Clinics for Gender-Affirming Medical Care in Canada Bauer, Greta R.; Pacaud, Daniele; Couch, Robert; Metzger, Daniel L.; Gale, Lorraine; Gotovac, Sandra; Mokashi, Arati; Feder, Stephen; Raiche, Joe; Speechley, Kathy Nixon; Newhook, Julia Temple; Ghosh, Shuvo; Sansfacon, Annie Pullen; Susset, Francoise; Lawson, Margaret L. Share Save
Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey Chow, Andrea J.; Pugliese, Michael; Tessier, Laure A.; Chakraborty, Pranesh; Iverson, Ryan; Coyle, Doug; Kronick, Jonathan B.; Wilson, Kumanan; Hayeems, Robin; Al-Hertani, Walla; Inbar-Feigenberg, Michal; Jain-Ghai, Shailly; Laberge, Anne-Marie; Little, Julian; Mitchell, John J.; Prasad, Chitra; Siriwardena, Komudi; Sparkes, Rebecca; Speechley, Kathy N.; Stockler, Sylvia; Trakadis, Yannis; Walia, Jagdeep S.; Wilson, Brenda J.; Potter, Beth K. Share Save
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Seizure freedom improves health-related quality of life after epilepsy surgery in children Jain, Puneet; Smith, Mary Lou; Speechley, Kathy; Ferro, Mark; Connolly, Mary; Ramachandrannair, Rajesh; Almubarak, Salah; Andrade, Andrea; Widjaja, Elysa; Snead, O. Carter, III; Go, Cristina Share Save
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