Families' healthcare experiences for children with inherited metabolic diseases: protocol for a mixed methods cohort study.
Andrea J ChowRyan IversonMonica LamoureuxKylie TingleyIsabel JordanNicole PalloneMaureen SmithZobaida Al-BaldawiPranesh ChakrabortyJamie BrehautAlicia ChanEyal CohenSarah DyackLisa Jane GillisSharan GoobieIan D GrahamCheryl R GreenbergJeremy M GrimshawRobin Z HayeemsShailly Jain-GhaiAnn JollySara KhanguraJennifer J MacKenzieNathalie MajorJohn J MitchellStuart G NichollsAmy PenderMurray PotterChitra PrasadLisa A ProsserAndreas SchulzeKomudi SiriwardenaRebecca SparkesKathy SpeechleySylvia StocklerMonica TaljaardMari TeitelbaumYannis TrakadisClara van KarnebeekJagdeep S WaliaBrenda J WilsonKumanan WilsonBeth K PotterPublished in: BMJ open (2022)
The study protocol and procedures were approved by the Children's Hospital of Eastern Ontario's Research Ethics Board, the University of Ottawa Research Ethics Board and the research ethics boards of each participating study centre. Findings will be published in peer-reviewed journals and presented at scientific conferences.