Background Patient-centered health care for children with inborn errors of metabolism (IEM)
and their families is important and requires an understanding of patient experiences, needs …

Parents of children with inborn errors of metabolism (IEM) face numerous psychosocial
challenges. An increased understanding and awareness of these stressors can ensure …

Background We sought to understand the experiences of parents/caregivers of children with
inherited metabolic diseases (IMD) in order to inform strategies for supporting patients and …

Background Inborn errors of metabolism (IEM) are a group of rare, heterogeneous and
complex genetic conditions. Clinically, IEM often affect the central nervous system and other …

Background Improvements in health care for children with chronic diseases must be
informed by research that emphasizes outcomes of importance to patients and families. To …

Background Newborn screening for inborn errors of metabolism is regarded as highly
successful by health professionals. Little is known about parents' perspectives on child …

Background Inborn errors of metabolism (IEMs) underlie a substantial proportion of
paediatric disease burden but their genetic diagnosis can be challenging using the …

Patients with inborn errors of metabolism and their families require unique clinical care
including management of acute illnesses, screening for long term complications, discussion …

Across all areas of health care, decision makers are in pursuit of what Berwick and
colleagues have called the “triple aim”: improving patient experiences with care, improving …

Abstract Background The Canadian Inherited Metabolic Diseases Research Network
(CIMDRN) is a pan-Canadian practice-based research network of 14 Hereditary Metabolic …