Parents’ experiences of living with, and caring for children, adolescents and young adults with Mucopolysaccharidosis (MPS)

Early psychological reactions in parents of children with a life threatening illness within a pediatric hospital setting

(2015) F. Muscara et al.   EUROPEAN PSYCHIATRY

Burden of disease in patients with Morquio A syndrome: results from an international patient-reported outcomes survey

(2014) Christian J Hendriksz et al.   Orphanet Journal of Rare Diseases

Care in the home for seriously ill children with complex needs

(2014) Cynthia Ward et al.   Journal of Child Health Care

The Morquio A Clinical Assessment Program: Baseline results illustrating progressive, multisystemic clinical impairments in Morquio A subjects

(2013) Paul Harmatz et al.   MOLECULAR GENETICS AND METABOLISM

Early initiation of enzyme replacement therapy for the mucopolysaccharidoses

(2013) Joseph Muenzer   MOLECULAR GENETICS AND METABOLISM

Challenging symptoms in children with rare life-limiting conditions: findings from a prospective diary and interview study with families

(2012) C Malcolm et al.   ACTA PAEDIATRICA

Parental social support, coping strategies, resilience factors, stress, anxiety and depression levels in parents of children with MPS III (Sanfilippo syndrome) or children with intellectual disabilities (ID)

(2012) Sheena Grant et al.   JOURNAL OF INHERITED METABOLIC DISEASE

Home Care of Children and Youth With Complex Health Care Needs and Technology Dependencies

(2012) E. R. Elias et al.   PEDIATRICS

"Fighting the system": Families caring for ventilator-dependent children and adults with complex health care needs at home

(2011) Knut Dybwik et al.   BMC HEALTH SERVICES RESEARCH

Mucopolysaccharidosis type II: European recommendations for the diagnosis and multidisciplinary management of a rare disease

(2011) Maurizio Scarpa et al.   Orphanet Journal of Rare Diseases

Challenging symptom profiles of life-limiting conditions in children: a survey of care professionals and families

(2011) Cari Malcolm et al.   PALLIATIVE MEDICINE

Overview of the mucopolysaccharidoses

(2011) J. Muenzer   RHEUMATOLOGY

Explicating Caregiving by Mothers of Children With Complex Needs in Ireland: A Phenomenological Study

(2011) Honor M. Nicholl et al.   Journal of Pediatric Nursing-Nursing Care of Children & Families

Living with advanced Parkinson’s disease: a constant struggle with unpredictability

(2010) Anita Haahr et al.   JOURNAL OF ADVANCED NURSING

Effects of enzyme replacement therapy on growth in patients with mucopolysaccharidosis type II

(2010) G. Schulze-Frenking et al.   JOURNAL OF INHERITED METABOLIC DISEASE

Clinical overview of children with mucopolysaccharidosis type III A and effect of Risperidone treatment on children and their mothers psychological status

(2009) Sema Kalkan Ucar et al.   BRAIN & DEVELOPMENT

Enzyme replacement therapy for mucopolysaccharidosis VI from 8 weeks of age-a sibling control study

(2009) JJ McGill et al.   CLINICAL GENETICS

Pediatric Palliative Care: An Assessment of Physicians' Confidence in Skills, Desire for Training, and Willingness to Refer for End-of-Life Care

(2008) M. Joan Sheetz et al.   American Journal of Hospice & Palliative Medicine