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Evaluation of the quality of clinical data collection for a pan-Canadian cohort of children affected by inherited metabolic diseases: lessons learned from the Canadian Inherited Metabolic Diseases Research Network.
Tingley, Kylie; Lamoureux, Monica; Pugliese, Michael; Geraghty, Michael T; Kronick, Jonathan B; Potter, Beth K; Coyle, Doug; Wilson, Kumanan; Kowalski, Michael; Austin, Valerie; Brunel-Guitton, Catherine; Buhas, Daniela; Chan, Alicia K J; Dyack, Sarah; Feigenbaum, Annette; Giezen, Alette; Goobie, Sharan; Greenberg, Cheryl R; Ghai, Shailly Jain; Inbar-Feigenberg, Michal; Karp, Natalya; Kozenko, Mariya; Langley, Erica; Lines, Matthew; Little, Julian; MacKenzie, Jennifer; Maranda, Bruno; Mercimek-Andrews, Saadet; Mohan, Connie; Mhanni, Aizeddin; Mitchell, Grant; Mitchell, John J; Nagy, Laura; Napier, Melanie; Pender, Amy; Potter, Murray; Prasad, Chitra; Ratko, Suzanne; Salvarinova, Ramona; Schulze, Andreas; Siriwardena, Komudi; Sondheimer, Neal; Sparkes, Rebecca; Stockler-Ipsiroglu, Sylvia; Trakadis, Yannis; Turner, Lesley; Van Karnebeek, Clara; Vallance, Hilary; Vandersteen, Anthony; Walia, Jagdeep.
Afiliación
  • Tingley K; University of Ottawa, Ottawa, Ontario, Canada.
  • Lamoureux M; Newborn Screening Ontario, Children's Hospital of Eastern Ontario, 401 Smyth Road, Ottawa, Ontario, K1H 8L1, Canada.
  • Pugliese M; University of Ottawa, Ottawa, Ontario, Canada.
  • Geraghty MT; University of Ottawa, Ottawa, Ontario, Canada.
  • Kronick JB; Newborn Screening Ontario, Children's Hospital of Eastern Ontario, 401 Smyth Road, Ottawa, Ontario, K1H 8L1, Canada.
  • Potter BK; The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
  • Coyle D; University of Ottawa, Ottawa, Ontario, Canada.
  • Wilson K; University of Ottawa, Ottawa, Ontario, Canada.
  • Kowalski M; University of Ottawa, Ottawa, Ontario, Canada.
  • Austin V; Bruyère Research Institute, Ottawa, ON, Canada.
  • Brunel-Guitton C; Department of Medicine, Ottawa Hospital Research Institute, Ottawa, ON, Canada.
  • Buhas D; Newborn Screening Ontario, Children's Hospital of Eastern Ontario, 401 Smyth Road, Ottawa, Ontario, K1H 8L1, Canada.
  • Chan AKJ; The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
  • Dyack S; Le centre hospitalier universitaire Ste-Justine, Montreal, Quebec, Canada.
  • Feigenbaum A; Montreal Children's Hospital, McGill University, Montreal, Quebec, Canada.
  • Giezen A; Stollery Children's Hospital, University of Alberta, Edmonton, Alberta, Canada.
  • Goobie S; IWK Health Centre, Dalhousie University, Halifax, Nova Scotia, Canada.
  • Greenberg CR; The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
  • Ghai SJ; BC Children's Hospital, University of British Columbia, Vancouver, British Columbia, Canada.
  • Inbar-Feigenberg M; IWK Health Centre, Dalhousie University, Halifax, Nova Scotia, Canada.
  • Karp N; Health Sciences Centre Winnipeg, University of Manitoba, Winnipeg, Manitoba, Canada.
  • Kozenko M; Stollery Children's Hospital, University of Alberta, Edmonton, Alberta, Canada.
  • Langley E; The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
  • Lines M; London Health Sciences Centre, Western University, London, Ontario, Canada.
  • Little J; Hamilton Health Sciences Centre, McMaster University, Hamilton, Ontario, Canada.
  • MacKenzie J; Newborn Screening Ontario, Children's Hospital of Eastern Ontario, 401 Smyth Road, Ottawa, Ontario, K1H 8L1, Canada.
  • Maranda B; Newborn Screening Ontario, Children's Hospital of Eastern Ontario, 401 Smyth Road, Ottawa, Ontario, K1H 8L1, Canada.
  • Mercimek-Andrews S; University of Ottawa, Ottawa, Ontario, Canada.
  • Mohan C; Hamilton Health Sciences Centre, McMaster University, Hamilton, Ontario, Canada.
  • Mhanni A; Le centre hospitalier universitaire Sherbrooke, Sherbrooke, Quebec, Canada.
  • Mitchell G; The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
  • Mitchell JJ; Alberta Children's Hospital, University of Calgary, Calgary, Alberta, Canada.
  • Nagy L; Health Sciences Centre Winnipeg, University of Manitoba, Winnipeg, Manitoba, Canada.
  • Napier M; Le centre hospitalier universitaire Ste-Justine, Montreal, Quebec, Canada.
  • Pender A; Montreal Children's Hospital, McGill University, Montreal, Quebec, Canada.
  • Potter M; The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
  • Prasad C; London Health Sciences Centre, Western University, London, Ontario, Canada.
  • Ratko S; Hamilton Health Sciences Centre, McMaster University, Hamilton, Ontario, Canada.
  • Salvarinova R; Hamilton Health Sciences Centre, McMaster University, Hamilton, Ontario, Canada.
  • Schulze A; London Health Sciences Centre, Western University, London, Ontario, Canada.
  • Siriwardena K; London Health Sciences Centre, Western University, London, Ontario, Canada.
  • Sondheimer N; BC Children's Hospital, University of British Columbia, Vancouver, British Columbia, Canada.
  • Sparkes R; The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
  • Stockler-Ipsiroglu S; Stollery Children's Hospital, University of Alberta, Edmonton, Alberta, Canada.
  • Trakadis Y; The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
  • Turner L; Alberta Children's Hospital, University of Calgary, Calgary, Alberta, Canada.
  • Van Karnebeek C; BC Children's Hospital, University of British Columbia, Vancouver, British Columbia, Canada.
  • Vallance H; Montreal Children's Hospital, McGill University, Montreal, Quebec, Canada.
  • Vandersteen A; Janeway Children's Hospital, Memorial University, St John's, NL, Canada.
  • Walia J; BC Children's Hospital, University of British Columbia, Vancouver, British Columbia, Canada.
Orphanet J Rare Dis ; 15(1): 89, 2020 04 10.
Article en En | MEDLINE | ID: mdl-32276663

Texto completo: 1 Bases de datos: MEDLINE Asunto principal: Enfermedades Metabólicas Tipo de estudio: Etiology_studies / Incidence_studies / Observational_studies / Risk_factors_studies Límite: Child / Humans País/Región como asunto: America do norte Idioma: En Revista: Orphanet J Rare Dis Asunto de la revista: MEDICINA Año: 2020 Tipo del documento: Article País de afiliación: Canadá

Texto completo: 1 Bases de datos: MEDLINE Asunto principal: Enfermedades Metabólicas Tipo de estudio: Etiology_studies / Incidence_studies / Observational_studies / Risk_factors_studies Límite: Child / Humans País/Región como asunto: America do norte Idioma: En Revista: Orphanet J Rare Dis Asunto de la revista: MEDICINA Año: 2020 Tipo del documento: Article País de afiliación: Canadá