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Families' healthcare experiences for children with inherited metabolic diseases: protocol for a mixed methods cohort study.
Chow, Andrea J; Iverson, Ryan; Lamoureux, Monica; Tingley, Kylie; Jordan, Isabel; Pallone, Nicole; Smith, Maureen; Al-Baldawi, Zobaida; Chakraborty, Pranesh; Brehaut, Jamie; Chan, Alicia; Cohen, Eyal; Dyack, Sarah; Gillis, Lisa Jane; Goobie, Sharan; Graham, Ian D; Greenberg, Cheryl R; Grimshaw, Jeremy M; Hayeems, Robin Z; Jain-Ghai, Shailly; Jolly, Ann; Khangura, Sara; MacKenzie, Jennifer J; Major, Nathalie; Mitchell, John J; Nicholls, Stuart G; Pender, Amy; Potter, Murray; Prasad, Chitra; Prosser, Lisa A; Schulze, Andreas; Siriwardena, Komudi; Sparkes, Rebecca; Speechley, Kathy; Stockler, Sylvia; Taljaard, Monica; Teitelbaum, Mari; Trakadis, Yannis; van Karnebeek, Clara; Walia, Jagdeep S; Wilson, Brenda J; Wilson, Kumanan; Potter, Beth K.
Afiliación
  • Chow AJ; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
  • Iverson R; Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
  • Lamoureux M; Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
  • Tingley K; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
  • Jordan I; Patient Partner, Squamish, British Columbia, Canada.
  • Pallone N; Patient Partner, Canadian PKU & Allied Disorders Inc, Toronto, Ontario, Canada.
  • Smith M; Patient Partner, Canadian Organization for Rare Disorders, Toronto, Ontario, Canada.
  • Al-Baldawi Z; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
  • Chakraborty P; Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
  • Brehaut J; Department of Pediatrics, University of Ottawa, Ottawa, Ontario, Canada.
  • Chan A; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
  • Cohen E; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
  • Dyack S; Department of Medical Genetics, University of Alberta, Edmonton, Alberta, Canada.
  • Gillis LJ; Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada.
  • Goobie S; Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada.
  • Graham ID; Division of Pediatric Medicine, The Hospital for Sick Children, Toronto, Ontario, Canada.
  • Greenberg CR; Division of Medical Genetics, Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada.
  • Grimshaw JM; Department of Medicine, Johns Hopkins All Children's Hospital, St Petersburg, Florida, USA.
  • Hayeems RZ; Division of Medical Genetics, Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada.
  • Jain-Ghai S; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
  • Jolly A; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
  • Khangura S; Rady Faculty of Health Sciences, Max Rady College of Medicine, Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, Manitoba, Canada.
  • MacKenzie JJ; Children's Hospital Research Institute of Manitoba, Winnipeg, Manitoba, Canada.
  • Major N; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
  • Mitchell JJ; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada.
  • Nicholls SG; Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada.
  • Pender A; Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
  • Potter M; Department of Medical Genetics, University of Alberta, Edmonton, Alberta, Canada.
  • Prasad C; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
  • Prosser LA; Contagion Consulting Group, Ottawa, Ontario, Canada.
  • Schulze A; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
  • Siriwardena K; Hamilton Health Sciences, McMaster Children's Hospital, Hamilton, Ontario, Canada.
  • Sparkes R; Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
  • Speechley K; Department of Pediatrics, University of Ottawa, Ottawa, Ontario, Canada.
  • Stockler S; Division of Pediatric Endocrinology, Department of Pediatrics, Montreal Children's Hospital, Montreal, Quebec, Canada.
  • Taljaard M; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
  • Teitelbaum M; Ottawa Methods Centre, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
  • Trakadis Y; Hamilton Health Sciences, McMaster Children's Hospital, Hamilton, Ontario, Canada.
  • van Karnebeek C; Hamilton Health Sciences, McMaster Children's Hospital, Hamilton, Ontario, Canada.
  • Walia JS; Department of Pathology and Molecular Medicine, McMaster University, Hamilton, Ontario, Canada.
  • Wilson BJ; Department of Pediatrics, Western University, London, Ontario, Canada.
  • Wilson K; Department of Pediatrics, Susan B. Meister Child Health Evaluation and Research Center, University of Michigan, Ann Arbor, Michigan, USA.
  • Potter BK; Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada.
BMJ Open ; 12(2): e055664, 2022 Feb 22.
Article en En | MEDLINE | ID: mdl-35193919
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Atención a la Salud / Enfermedades Metabólicas Tipo de estudio: Etiology_studies / Guideline / Incidence_studies / Observational_studies / Qualitative_research / Risk_factors_studies Aspecto: Determinantes_sociais_saude / Ethics Límite: Child / Humans Idioma: En Revista: BMJ Open Año: 2022 Tipo del documento: Article País de afiliación: Canadá Pais de publicación: Reino Unido
Texto completo
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Atención a la Salud / Enfermedades Metabólicas Tipo de estudio: Etiology_studies / Guideline / Incidence_studies / Observational_studies / Qualitative_research / Risk_factors_studies Aspecto: Determinantes_sociais_saude / Ethics Límite: Child / Humans Idioma: En Revista: BMJ Open Año: 2022 Tipo del documento: Article País de afiliación: Canadá Pais de publicación: Reino Unido