Adult care for Duchenne muscular dystrophy in the UK

[1]  D. Abbott,et al.  ‘Wasting precious time’: young men with Duchenne muscular dystrophy negotiate the transition to adulthood , 2014 .

[2]  B. Beresford,et al.  Young adults as users of adult healthcare: experiences of young adults with complex or life-limiting conditions. , 2014, Clinical medicine.

[3]  B. Engelen,et al.  200th ENMC International Workshop “European Reference Networks: Recommendations and Criteria in the Neuromuscular field”, 18–20 October 2013, Naarden, the Netherlands , 2014, Neuromuscular Disorders.

[4]  Laura Marrow,et al.  Improving chronic care delivery and outcomes: the impact of the cystic fibrosis Care Center Network , 2014, BMJ quality & safety.

[5]  B. Engelen,et al.  200th ENMC International Workshop "European Reference Networks: Rec- ommendations and Criteria in the Neuromuscular field" , 2014 .

[6]  Domenica Taruscio,et al.  The TREAT‐NMD Duchenne Muscular Dystrophy Registries: Conception, Design, and Utilization by Industry and Academia , 2013, Human mutation.

[7]  L. E. Peterson,et al.  Pediatric collaborative networks for quality improvement and research. , 2013, Academic pediatrics.

[8]  F. Muntoni,et al.  EMERGENCY NEUROMUSCULAR ADMISSIONS ARE AVOIDABLE: A REGIONAL AUDIT OF UNPLANNED HOSPITAL ADMISSIONS OF NEUROMUSCULAR PATIENTS 2009–2011: FINAL RESULTS AND RECOMMENDATIONS , 2013, Journal of Neurology, Neurosurgery & Psychiatry.

[9]  R. Pangalila,et al.  Transition in Duchenne Muscular Dystrophy: An expert meeting report and description of transition needs in an emergent patient population (Parent Project Muscular Dystrophy Transition Expert Meeting 17–18 June 2011, Amsterdam, The Netherlands) , 2013, Neuromuscular Disorders.

[10]  M. Hanna,et al.  Audit of unplanned admissions in neuromuscular patients: a collaborative audit , 2012 .

[11]  G. Elwyn,et al.  Interventions to reduce unplanned hospital admission: a series of systematic reviews , 2012 .

[12]  D. Abbott.  Other Voices, Other Rooms: Reflections on Talking to Young Men with Duchenne Muscular Dystrophy and Their Families About Transition to Adulthood , 2012 .

[13]  Cindy Hamil,et al.  Evidence‐based path to newborn screening for duchenne muscular dystrophy , 2012, Annals of neurology.

[14]  E. Mohammadi,et al.  Barriers and facilitators related to the implementation of a physiological track and trigger system: A systematic review of the qualitative evidence , 2017, International journal for quality in health care : journal of the International Society for Quality in Health Care.

[15]  K. Bushby,et al.  Patients' forum Transition to adulthood for young men with Duchenne muscular dystrophy: Research from the UK , 2012 .

[16]  M McKee,et al.  Improving the transition between paediatric and adult healthcare : a systematic review , 2011 .

[17]  Craig McDonald,et al.  Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care , 2010, The Lancet Neurology.

[18]  R. Finkel,et al.  Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management , 2010, The Lancet Neurology.

[19]  Sarah Purdy,et al.  Avoiding hospital admissions. What does the research evidence say , 2010 .

[20]  S. Kirk.  Transitions in the lives of young people with complex healthcare needs. , 2008, Child: care, health and development.

[21]  John Bourke,et al.  Managing Duchenne muscular dystrophy – The additive effect of spinal surgery and home nocturnal ventilation in improving survival , 2007, Neuromuscular Disorders.

[22]  D. Judge,et al.  Current treatment of adult Duchenne muscular dystrophy. , 2007, Biochimica et biophysica acta.

[23]  M. Phillips,et al.  Service provision for adults with long-term disability: A review of services for adults with chronic neuromuscular conditions in the United Kingdom , 2006, Neuromuscular Disorders.

[24]  Jes Rahbek,et al.  Adult life with Duchenne muscular dystrophy: Observations among an emerging and unforeseen patient population , 2005, Pediatric rehabilitation.

[25]  Frédéric Lofaso,et al.  Optimization of power wheelchair control for patients with severe Duchenne muscular dystrophy , 2004, Neuromuscular Disorders.

[26]  Colin Chandler,et al.  Survival in Duchenne muscular dystrophy: improvements in life expectancy since 1967 and the impact of home nocturnal ventilation , 2002, Neuromuscular Disorders.

[27]  A. Emery.  Population frequencies of inherited neuromuscular diseases—A world survey , 1991, Neuromuscular Disorders.