The TREAT-NMD care and trial site registry: an online registry to facilitate clinical research for neuromuscular diseases

Table 1 Simplified description of data captured in TREAT-NMD CTSR

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

ISSN: 1750-1172