Centres - Duchenne Muscle Centre Provision

Provides Full Services Diagnosis
Yes Does the centre confirm diagnosis and ensure that the full length of the dystrophin gene has been analysed for variations if this has not been previously tested?

Provides Partial Services Neuromuscular Management
Yes Does the centre have a specialist neuromuscular consultant leading the team?
Yes Does the centre offer 6 monthly appointments with a neuromuscular consultant?
No Does the centre follow a multi centred standardised clinical assessment procedure during consultations? (e.g. North Star)
No Does the centre offer advice on the use of steroids as a treatment? (e.g. Prednisolone or Deflazacort)
No Does the centre offer to patients referral to an endocrinologist with specialist knowledge of Duchenne?
Yes Does the centre offer emergency A&E advice and support with on call cover?
No Does the Centre offer patients a personal Health and Education Plan?
Yes Does the centre send reports of 6 monthly assessments and reviews to local service providers?

Provides Partial Services Rehabilitation management
No Does the centre refer patients to its own specialist Physiotherapist that uses a multi centred standardised assessment protocol? (e.g. North Star)
Yes Does the centre offer advice and assessment for wheelchairs even if provision is made at a local level?
Yes Does the centre assess and provide for the provision of orthotic devices? (e.g. AFO's)
No Does the centre offer to patients referral to its own Occupational Therapist with specialist knowledge of Duchenne?

Orthopaedic Management
No Does the centre monitor patients bone density through dexa scans when appropriate?
No Does the centre recommend the use of bisphosphonate treatments when appropriate? (e.g. Pamidronate or Zolandronic acid)

Provides Full Services Pulmonary Management
Yes Does the centre provide advice, management and access to assistive breathing and cough assist equipment?
Yes Does the centre measure Forced Vital Capacity (measure of lung function) when not on Bipap?
Yes Does the centre refer patients to a specialist respiratory clinic during periods of concern or significant pulmonary failure ?

Provides Partial Services Cardiac Management
Yes Does the centre assess cardiac problems during the progression of Duchenne?
No Does the centre offer a heart ultrasound (echocardiogram) every year?
Yes Does the centre refer patients to a consultant cardiologist as part of its team who has specialist knowledge of Duchenne?
Yes Does the centre recommend the current standard use of heart medication (e.g. Beta blockers or Ace inhibitors?

Provides Partial Services Gastrointestinal Management
Yes Does the centre use clinical and X ray tests of swallowing during the progression of the condition?
Yes Does the centre offer the use of gastric tube placement in case of weight loss and difficulties with eating enough?
Yes Does the centre refer patients to a Speech and Language therapist who is part of its team to deliver individualised treatment plans to preserve swallowing?
No Does the centre offer advice on nutrition and diet?
No Does the centre provide advice on oral care?

Provides Partial Services Psychosocial Management
Yes Does the centre offer patients referral for assessment to psychology, psychotherapy or counselling services?
Yes Does the centre offer patients referral to a specialist education Tutor as part of its team for assessment and who is able to advise parents, Colleges and employers?
Yes Does the centre refer patients to a Speech Therapist who is part of its team and has experience of Duchenne patients?
No Does the centre follow through a transition to adult programme of support at 18+ years by offering advice and support for health, education, employment and personal development?

Provides Partial Services Genetic testing
Yes Does the centre provide a full genetic analysis of the dystrophin gene?
Unanswered Does the centre provide details and explanation of genetic variation in the dystrophin gene to families?
Yes Does the centre offer genetic counselling?

Clinical Trials and Research
No Does the centre participate in patient Registries and audits of provision?
No Does the centre recruit patients for performing its own Duchenne clinical trials?
No Does the centre conduct Duchenne research?

Rank	Centre
1	Newcastle Muscle Centre, Institute of Genetic Medicine
2	John Radcliffe Hospital Oxford
3	Frenchay Hospital Bristol
3	Gorseinon Hospital Swansea
3	MRC Centre for Neuromuscular Diseases London
6	Derriford Hospital Plymouth
7	Kings College Hospital London
8	Walton Centre for Neurology and Neurosurgery NHS Foundation Trust