Families’ healthcare experiences for children with inherited metabolic diseases: protocol for a mixed methods cohort study

• Monica Taljaard,
• Sarah Dyack,
• Jeremy M Grimshaw,
• Andreas Schulze,
• Ian D Graham,
• Jamie Brehaut,
• Kumanan Wilson,
• Pranesh Chakraborty,
• Nathalie Major,
• Eyal Cohen,
• Yannis Trakadis,
• Clara van Karnebeek,
• Maureen Smith,
• Kathy Speechley,
• Komudi Siriwardena,
• Robin Z Hayeems,
• Sharan Goobie,
• Beth K Potter,
• Jagdeep S Walia,
• Jennifer J MacKenzie,
• Chitra Prasad,
• Stuart G Nicholls,
• Ann Jolly,
• Brenda J Wilson,
• Lisa A Prosser,
• Andrea J Chow,
• Ryan Iverson,
• Monica Lamoureux,
• Kylie Tingley,
• Isabel Jordan,
• Nicole Pallone,
• Zobaida Al-Baldawi,
• Alicia Chan,
• Lisa Jane Gillis,
• Cheryl R Greenberg,
• Shailly Jain-Ghai,
• Sara Khangura,
• John J Mitchell,
• Amy Pender,
• Murray Potter,
• Rebecca Sparkes,
• Sylvia Stockler,
• Mari Teitelbaum

Affiliations

Monica Taljaard

School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada

Sarah Dyack

6 Maritime Medical Genetics Service, IWK Health Centre, Halifax, Nova Scotia, Canada

Jeremy M Grimshaw

Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada

Andreas Schulze

1 Department of Neonatology, Perinatal Center Grosshadern, Dr von Hauner Children`s Hospital, Ludwig Maximilian University of Munich, Munich, Germany

Ian D Graham

Faculty of Medicine, University of Ottawa, Ottawa, Ontario, Canada

Jamie Brehaut

Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada

Kumanan Wilson

senior scientist and professor

Pranesh Chakraborty

2 Newborn Screening Ontario, Children’s Hospital of Eastern Ontario, Ottawa, Canada

Nathalie Major

Department of Paediatrics, Children`s Hospital of Eastern Ontario, Ottawa, Ontario, Canada

Eyal Cohen

Division of Paediatric Medicine, The Hospital for Sick Children, Toronto, Ontario, Canada

Yannis Trakadis

Department of Specialized Medicine, Division of Medical Genetics, McGill University Health Centre, Montreal, Quebec, Canada

Clara van Karnebeek

Department of Pediatrics, Emma Children`s Hospital, Amsterdam Gastroenterology and Metabolism, Amsterdam University Medical Centres, University of Amsterdam, Amsterdam, Netherlands

Maureen Smith

consumer

Kathy Speechley

Department of Pediatrics, Western University, London, Ontario, Canada

Komudi Siriwardena

Department of Medical Genetics, University of Alberta, Edmonton, Alberta, Canada

Robin Z Hayeems

2Department of Paediatrics, Child Health Policy Initiative, University of Toronto, Toronto, Ontario, Canada

Sharan Goobie

4 Medical Genetics, Department of Pediatrics, IWK Health Centre, Halifax, Canada

Beth K Potter

1 Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada

Jagdeep S Walia

1Centre for Neuroscience Research, Queen’s University, Kingston, ON, Canada, K7L 3N6

Jennifer J MacKenzie

1Department of Pediatrics, Queen’s University, Kingston, ON, Canada

Chitra Prasad

9Department of Pediatrics, Schulich School of Medicine and Dentistry, London, ON, Canada

Stuart G Nicholls

Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada

Ann Jolly

Surveillance and Risk Assessment Division, Centre for Communicable Disease and Infection Control, Infectious Disease Emergency Preparedness Branch, Public Health Agency of Canada, Ottawa, Ontario, Canada

Brenda J Wilson

senior lecturer

Lisa A Prosser

Department of Health Management and Policy, University of Michigan, Ann Arbor, Michigan, USA

Andrea J Chow

School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada

Ryan Iverson

Children`s Hospital of Eastern Ontario, Ottawa, Ontario, Canada

Monica Lamoureux

Children`s Hospital of Eastern Ontario, Ottawa, Ontario, Canada

Kylie Tingley

School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada

Isabel Jordan

Patient Partner, Squamish, British Columbia, Canada

Nicole Pallone

Patient Partner, Canadian PKU & Allied Disorders Inc, Toronto, Ontario, Canada

Zobaida Al-Baldawi

School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada

Alicia Chan

Department of Medical Genetics, University of Alberta, Edmonton, Alberta, Canada

Lisa Jane Gillis

Department of Medicine, Johns Hopkins All Children`s Hospital, St Petersburg, Florida, USA

Cheryl R Greenberg

Rady Faculty of Health Sciences, Max Rady College of Medicine, Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, Manitoba, Canada

Shailly Jain-Ghai

Department of Medical Genetics, University of Alberta, Edmonton, Alberta, Canada

Sara Khangura

School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada

John J Mitchell

Division of Pediatric Endocrinology, Department of Pediatrics, Montreal Children`s Hospital, Montreal, Quebec, Canada

Amy Pender

Hamilton Health Sciences, McMaster Children`s Hospital, Hamilton, Ontario, Canada

Murray Potter

Hamilton Health Sciences, McMaster Children`s Hospital, Hamilton, Ontario, Canada

Rebecca Sparkes

Departments of Medical Genetics and Pediatrics, Alberta Children`s Hospital, Calgary, Alberta, Canada

Sylvia Stockler

Department of Pediatrics, BC Children`s Hospital, Vancouver, British Columbia, Canada

Mari Teitelbaum

Children`s Hospital of Eastern Ontario, Ottawa, Ontario, Canada