Review of clinical trials and guidelines for children and youth with mucopolysaccharidosis: outcome selection and measurement.

Autor: Howie AH; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada., Tingley K; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada., Inbar-Feigenberg M; Division of Clinical and Metabolic Genetics, Hospital for Sick Children, Toronto, Canada., Mitchell JJ; McGill University Health Centre, Montreal, Canada., Angel K; The Canadian MPS Society, Vancouver, Canada., Gentle J; Patient Partner, Vancouver, Canada., Smith M; Patient Partner, Canadian Organization for Rare Disorders, Ottawa, Canada., Offringa M; Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, Canada., Butcher NJ; Hospital for Sick Children, Toronto, Canada., Campeau PM; Université de Montréal, Montréal, Canada., Chakraborty P; Children's Hospital of Eastern Ontario, Ottawa, Canada., Chan A; Department of Medical Genetics, University of Alberta, Edmonton, Canada., Fergusson D; Ottawa Hospital Research Institute, Ottawa, Canada., Mamak E; Department of Psychology, Hospital for Sick Children, Toronto, Canada., McClelland P; Children's Hospital of Eastern Ontario, Ottawa, Canada., Mercimek-Andrews S; Department of Medical Genetics, University of Alberta, Edmonton, Canada., Mhanni A; Max Rady College of Medicine, Winnipeg, Canada.; Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, Canada., Moazin Z; Children's Hospital of Eastern Ontario, Ottawa, Canada., Rockman-Greenberg C; Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, Canada., Rupar CA; Department of Pathology and Laboratory Medicine, Western University, London, Canada., Skidmore B; Independent Information Specialist, Ottawa, Canada., Stockler S; BC Children's Hospital, Vancouver, Canada., Thavorn K; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada.; Ottawa Hospital Research Institute, Ottawa, Canada., Wyatt A; Children's Hospital of Eastern Ontario, Ottawa, Canada., Potter BK; School of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Crescent, Ottawa, ON, K1G 5Z3, Canada. bpotter@uottawa.ca.

Publikováno v: Orphanet journal of rare diseases [Orphanet J Rare Dis] 2024 Oct 23; Vol. 19 (1), pp. 393. Date of Electronic Publication: 2024 Oct 23.

Iron Deficiency and Sleep/Wake Behaviors: A Scoping Review of Clinical Practice Guidelines-How to Overcome the Current Conundrum?

Autor: McWilliams S; H-Behaviours Research Lab (Previously Sleep/Wake-Behaviours Research Lab), BC Children's Hospital Research Institute, Department of Pediatrics, University of British Columbia, Vancouver, BC V5Z 4H4, Canada., Hill O; H-Behaviours Research Lab (Previously Sleep/Wake-Behaviours Research Lab), BC Children's Hospital Research Institute, Department of Pediatrics, University of British Columbia, Vancouver, BC V5Z 4H4, Canada., Ipsiroglu OS; H-Behaviours Research Lab (Previously Sleep/Wake-Behaviours Research Lab), BC Children's Hospital Research Institute, Department of Pediatrics, University of British Columbia, Vancouver, BC V5Z 4H4, Canada.; Divisions of Developmental Pediatrics, Child and Adolescent Psychiatry and Respirology, BC Children's Hospital, Department of Pediatrics, University of British Columbia, Vancouver, BC V6T 1Z4, Canada., Clemens S; Department of Physiology, Brody School of Medicine, East Carolina University, Greenville, NC 27834, USA., Weber AM; Department of Pediatrics, University of British Columbia, Vancouver, BC V6T 1Z4, Canada.; BC Children's Hospital Research Institute, Vancouver, BC V5Z 4H4, Canada., Chen M; Department of Pathology and Laboratory Medicine, University of British Columbia, Vancouver, BC V6T 1Z4, Canada., Connor J; Department of Neurosurgery, Penn State Hershey Medical Center, Hershey, PA 17033, USA., Felt BT; Department of Pediatrics, University of Michigan, Ann Arbor, MI 48109, USA., Manconi M; Sleep Medicine Unit, Neurocenter of the Southern Switzerland, Regional Hospital of Lugano, Faculty of Biomedical Sciences, Università della Svizzera Italiana, 6900 Lugano, Switzerland.; Department of Neurology, University of Bern, 3012 Bern, Switzerland., Mattman A; Department of Pathology and Laboratory Medicine, University of British Columbia, Vancouver, BC V6T 1Z4, Canada., Silvestri R; Department of Clinical and Experimental Medicine, Sleep Medicine Center, University of Messina, Azienda Ospedaliera Universitaria 'Gaetano Martino', 98122 Messina, Italy., Simakajornboon N; Sleep Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH 45229, USA., Smith SM; Department of Nutrition, UNC-Nutrition Research Institute, University of North Carolina at Chapel Hill, Kannapolis, NC 28081, USA., Stockler S; H-Behaviours Research Lab (Previously Sleep/Wake-Behaviours Research Lab), BC Children's Hospital Research Institute, Department of Pediatrics, University of British Columbia, Vancouver, BC V5Z 4H4, Canada.; Department of Pediatrics, University of British Columbia, Vancouver, BC V6T 1Z4, Canada.; Division of Biochemical Diseases, Department of Pediatrics, BC Children's Hospital, University of British Columbia, Vancouver, BC V6T 1Z4, Canada.

Publikováno v: Nutrients [Nutrients] 2024 Aug 03; Vol. 16 (15). Date of Electronic Publication: 2024 Aug 03.

Family-centred care interventions for children with chronic conditions: A scoping review.

Autor: Chow AJ; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada., Saad A; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada., Al-Baldawi Z; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada., Iverson R; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada., Skidmore B; Ottawa, Ontario, Canada., Jordan I; Squamish, British Columbia, Canada., Pallone N; Sparwood, British Columbia, Canada., Smith M; Canadian Organization for Rare Disorders, Ottawa, Ontario, Canada., Chakraborty P; Newborn Screening Ontario, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.; Department of Pediatrics, University of Ottawa, Ottawa, Ontario, Canada., Brehaut J; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada., Cohen E; Department of Pediatrics, University of Toronto/Hospital for Sick Children, Toronto, Ontario, Canada., Dyack S; Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada., Gillis J; Moffit Cancer Care Center, Tampa, Florida, USA., Goobie S; Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada., Greenberg CR; Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, Manitoba, Canada., Hayeems R; Child Health Evaluative Sciences, University of Toronto/Hospital for Sick Children, Toronto, Ontario, Canada., Hutton B; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada., Inbar-Feigenberg M; Division of Clinical & Metabolic Genetics, Hospital for Sick Children, Toronto, Ontario, Canada.; Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada., Jain-Ghai S; Department of Medical Genetics, University of Alberta, Edmonton, Alberta, Canada., Khangura S; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada., MacKenzie JJ; Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.; Department of Medicine, Queen's University, Kingston, Ontario, Canada., Mitchell JJ; Montreal Children's Hospital, Montreal, Quebec, Canada., Moazin Z; Newborn Screening Ontario, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada., Nicholls SG; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada., Pender A; McMaster Children's Hospital, Hamilton, Ontario, Canada., Prasad C; Department of Pediatrics, Western University, London, Ontario, Canada., Schulze A; Department of Biochemistry and Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada.; Clinical and Metabolic Genetics, Hospital for Sick Children, Toronto, Ontario, Canada., Siriwardena K; Department of Medical Genetics, University of Alberta, Edmonton, Alberta, Canada., Sparkes RN; Alberta Children's Hospital, Calgary, Alberta, Canada., Speechley KN; Departments of Pediatrics and Epidemiology and Biostatistics, Western University, London, Ontario, Canada., Stockler S; BC Children's Hospital, Vancouver, British Columbia, Canada., Taljaard M; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada., Teitelbaum M; Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada., Trakadis Y; Montreal Children's Hospital, Montreal, Quebec, Canada., Van Karnebeek C; Departments of Pediatrics and Human Genetics, Emma Center for Personalized Medicine, Amsterdam UMC, Amsterdam, The Netherlands., Walia JS; Department of Pediatrics, Queen's University, Kingston, Ontario, Canada., Wilson K; Department of Pediatrics, University of Ottawa, Ottawa, Ontario, Canada.; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada.; Bruyère Research Institute, Ottawa, Ontario, Canada., Potter BK; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.

Publikováno v: Health expectations : an international journal of public participation in health care and health policy [Health Expect] 2024 Feb; Vol. 27 (1), pp. e13897.

Generation of a human induced pluripotent stem cell line from a patient with hypomyelinating leukodystrophy 22 (HLD22).

Autor: Ozgoren OK; Centre for Molecular Medicine and Therapeutics, Djavad Mowafaghian Centre for Brain Health, British Columbia Children's Hospital Research Institute, University of British Columbia, Vancouver V5Z 4H4, Canada; Department of Medical Genetics, The University of British Columbia, Vancouver, British Columbia, Canada., Sequiera GL; Centre for Molecular Medicine and Therapeutics, Djavad Mowafaghian Centre for Brain Health, British Columbia Children's Hospital Research Institute, University of British Columbia, Vancouver V5Z 4H4, Canada; Department of Medical Genetics, The University of British Columbia, Vancouver, British Columbia, Canada., Ferrari Bardile C; Centre for Molecular Medicine and Therapeutics, Djavad Mowafaghian Centre for Brain Health, British Columbia Children's Hospital Research Institute, University of British Columbia, Vancouver V5Z 4H4, Canada; Department of Medical Genetics, The University of British Columbia, Vancouver, British Columbia, Canada., Gjervan SC; Centre for Molecular Medicine and Therapeutics, Djavad Mowafaghian Centre for Brain Health, British Columbia Children's Hospital Research Institute, University of British Columbia, Vancouver V5Z 4H4, Canada; Department of Medical Genetics, The University of British Columbia, Vancouver, British Columbia, Canada., Salman A; Department of Medical Genetics, The University of British Columbia, Vancouver, British Columbia, Canada., Lehman A; Department of Medical Genetics, The University of British Columbia, Vancouver, British Columbia, Canada., Turvey SE; Department of Pediatrics, The University of British Columbia and BC Children's Hospital, Vancouver, British Columbia, Canada., Ross CJD; Department of Medical Genetics, The University of British Columbia, Vancouver, British Columbia, Canada., Stockler S; Department of Pediatrics, The University of British Columbia and BC Children's Hospital, Vancouver, British Columbia, Canada., Pouladi MA; Centre for Molecular Medicine and Therapeutics, Djavad Mowafaghian Centre for Brain Health, British Columbia Children's Hospital Research Institute, University of British Columbia, Vancouver V5Z 4H4, Canada; Department of Medical Genetics, The University of British Columbia, Vancouver, British Columbia, Canada. Electronic address: map@pouladilab.org.

Publikováno v: Stem cell research [Stem Cell Res] 2023 Sep; Vol. 71, pp. 103174. Date of Electronic Publication: 2023 Jul 28.

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