Patient cohort
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Patients stratified by disease and age range (currently 10 NMDs including subtypes e.g. SMA I, II, III).
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Diagnostic tools as most appropriate for each condition.
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Care settings
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Availability of specialists and services in-centre.
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Arrangements for transition care.
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Availability of particular pulmonary, cardiac, muscle and bone function tests in-centre.
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Availability of particular physiotherapy facilities and equipment in-centre.
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Availability of emergency care in-centre.
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Experience of centre in conducting skeletal muscle biopsies.
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Research and education
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Extent of use of centre data in research, research funding arrangements, and papers authored by staff at centre
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Extent to which staff at centre have been involved in providing training at national and international levels
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Clinical trial infrastructure
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Available personnel (e.g. Study Nurses, Physiotherapists, Pharmacists)
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Previous experience (e.g. details of past participation in Phase I, II, III, IV clinical trials)
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Availability and details of equipment (e.g. refrigerators, IT support) |